MITIGATING APATHY AMONG OLDER ADULTS WITH AND WITHOUT
DEMENTIA ACROSS LONG TERM CARE AND COMMUNITY SETTINGS: A
MULTIMETHOD STUDY
by
Aderonke Oluwatoyin Agboji
B.Sc. (Hons), Waterford Institute of Technology, 2010
M.Sc., Royal College of Physicians and Surgeons of Ireland, 2012
M.Sc., University of Stirling, Scotland, 2018

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
IN
HEALTH SCIENCES

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
March, 2025
© Aderonke Agboji, 2025

Abstract
Background: Apathy, characterized by reduced interest in activities and social
interaction, is a prevalent yet often underrecognized condition among older adults in long-term
care facilities (LTCF) and community settings. It is associated with rapid cognitive decline,
functional impairments, and decreased life expectancy. Despite its impact, apathy is frequently
misdiagnosed or conflated with other conditions, such as depression and dementia, leading to
inadequate intervention strategies. While various non-pharmacological interventions have been
proposed, little is known about the effectiveness of eBook clubs as a non-pharmacological option
for mitigating apathy. This study seeks to address the overarching research question:
"What are the barriers, facilitators, prevalence, and risk factors of apathy among older
adults in LTCF and community settings, and how effective is an eBook club intervention in
mitigating apathy in these populations?"
Methods: This multimethod study employed a series of research designs to explore the
multidimensional aspects of apathy and its mitigation guided by the Biopsychosocial Model of
Health and Illness and Socioemotional Selectivity Theory. The prevalence and predictors of
apathy were analyzed cross-sectionally using the InterRAI Minimum Dataset (MDS 2.0) from
the Canadian Institute for Health Information, covering LTCF residents admitted between 2015
and 2019. A pre- and post-quasi-experimental multi methods design was used to assess the
effectiveness of an eBook club intervention among LTCF residents and community-dwelling
older adults in four rural communities in Northern British Columbia. The intervention’s impact
was measured by comparing apathy levels before and after participation.
Results: Findings highlight key barriers to apathy care, including the lack of a
standardized definition, limited awareness, symptom overlap with other disorders, and

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methodological challenges in clinical trials. Facilitators that promote effective apathy
management include caregiver involvement, professional training, and the adoption of innovative
screening and intervention methods. Apathy was prevalent in 12.5% of newly admitted LTCF
residents (N = 157,596) and 13.1% of those with Alzheimer’s disease and related dementias (N =
97,789). Cognitive impairment was identified as the strongest predictor of apathy among the
general LTCF population, while depression was the most significant risk factor among residents
with dementia. The eBook club intervention demonstrated positive effects, leading to improved
social engagement, cognitive stimulation, and emotional well-being among LTCF residents and
community-dwelling older adults.
Conclusion: Understanding the barriers, facilitators, prevalence, and risk factors of
apathy are essential for developing effective interventions. The findings suggest that structured,
accessible, and low-cost programs, such as eBook clubs, have the potential to mitigate apathy in
both LTCF and community settings. This study underscores the need for enhanced screening,
targeted interventions, and policy-driven efforts to improve apathy care and promote well-being
of residents in LTCF and community dwelling older adults.

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Table of Contents

Abstract ..................................................................................................................................... ii
Table of Contents ...................................................................................................................... iv
List of Tables .......................................................................................................................... viii
List of Figures ........................................................................................................................... ix
Glossary ......................................................................................................................................x
Acknowledgement ................................................................................................................... xii
Dedication............................................................................................................................... xiii
Chapter One: Introduction ...........................................................................................................1
Chapter Two: Background ..........................................................................................................6
Chapter Three: Methodology..................................................................................................... 16
Research Design .................................................................................................................... 16
Theoretical framework........................................................................................................... 21
Sample/settings...................................................................................................................... 23
Data source ............................................................................................................................ 23
Data cleaning ......................................................................................................................... 24
Ethical considerations ............................................................................................................ 25
Brief description of the intervention studies ........................................................................... 26
Chapter Four: Apathy in Older Adults with and without Dementia: An Integrative Review of
Barriers and Facilitators to Care ................................................................................................ 30
Abstract ................................................................................................................................. 30
Introduction ........................................................................................................................... 31
Methods ................................................................................................................................ 33
Problem formulation .......................................................................................................... 33
Literature search ................................................................................................................ 35
Data evaluation .................................................................................................................. 36
Data analysis ...................................................................................................................... 37
Data presentation ............................................................................................................... 37

Results ............................................................................................................................... 40
Barriers to Optimal Detection and Interventions for Apathy................................................... 40
Facilitators for Optimal Detection and Interventions for Apathy ......................................... 44
Discussion ............................................................................................................................. 46
Limitations of the study ......................................................................................................... 50
Clinical Implications.............................................................................................................. 50
Implications for research ....................................................................................................... 51
Recommendations ................................................................................................................. 52
Conclusion ............................................................................................................................ 52
Chapter Five: Investigating the prevalence and predictors of apathy among the Canadian longterm care residents: A secondary data analysis .......................................................................... 54
Abstract ................................................................................................................................. 54
Background & Purpose .......................................................................................................... 55
Methods and Procedures ........................................................................................................ 58
Study Design...................................................................................................................... 58
Setting and Sample ............................................................................................................ 59
Data collection ................................................................................................................... 59
Data analysis ...................................................................................................................... 60
Results ................................................................................................................................... 61
Sample characteristics ........................................................................................................ 61
Prevalence of apathy .......................................................................................................... 68
Predictors of apathy ........................................................................................................... 69
Discussion ............................................................................................................................. 71
Implication for practice/policy ............................................................................................... 77
Strengths and limitations of the study .................................................................................... 77
Conclusion ............................................................................................................................ 78
Chapter Six: The Prevalence and Risk Factors of Apathy among the Canadian Long-Term Care
Residents with Alzheimer’s Disease and Related Dementias ..................................................... 80
Abstract ................................................................................................................................. 80
Introduction ........................................................................................................................... 81
Materials and Methods .......................................................................................................... 84
Settings and Participants .................................................................................................... 84
Apathy measures ................................................................................................................ 86
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Theoretical framework ....................................................................................................... 87
Statistical analyses ............................................................................................................. 87
Results ................................................................................................................................... 88
Prevalence of apathy .......................................................................................................... 88
Biopsychosocial characteristics of apathy in dementia ........................................................ 90
Discussion ............................................................................................................................. 95
Strengths and limitations ..................................................................................................... 100
Implications for practice ...................................................................................................... 101
Conclusion .......................................................................................................................... 102
Chapter Seven: The Impact of eBook Clubs on Apathy among Long Term Care Residents: A
Pilot Study .............................................................................................................................. 104
Abstract ............................................................................................................................... 104
Background ......................................................................................................................... 106
Research Design and Methods.......................................................................................... 107
Results ................................................................................................................................. 112
Sample characteristics ...................................................................................................... 112
Impact of participation in eBook clubs on self reported apathy ......................................... 113
Key Factors Contributing to the Reduction in Apathy ...................................................... 113
Discussion ........................................................................................................................... 116
Strengths and limitations of the study .................................................................................. 118
Implications for practice ...................................................................................................... 119
Conclusion .......................................................................................................................... 119
Chapter Eight: Impact of eBook Club Implementation on Apathy Among Community Dwelling
Older Adults in Rural Canada: A Mixed Method Study ........................................................... 123
Abstract ............................................................................................................................... 123
Introduction ......................................................................................................................... 124
Methodology ....................................................................................................................... 126
Theoretical framework......................................................................................................... 126
Sample/settings ................................................................................................................ 127
Study Design.................................................................................................................... 128
Results ................................................................................................................................. 130
Sample characteristics ...................................................................................................... 130
Impact of participation in eBook clubs on apathy ............................................................. 133
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Mitigation Strategies to successful implementation of eBook clubs .................................. 137
Discussion ........................................................................................................................... 142
Strengths and limitations ..................................................................................................... 145
Implications for Practice ...................................................................................................... 146
Conclusion .......................................................................................................................... 146
Chapter Nine: Results and Major contributions ....................................................................... 148
Discussion ........................................................................................................................... 156
Strengths and Limitations .................................................................................................... 160
Chapter Ten: Implications and Key Recommendations ............................................................ 164
Clinical implications ............................................................................................................ 164
Implications for future research ........................................................................................... 165
Key Recommendations ........................................................................................................ 166
Recommendations for Nursing Practice ............................................................................ 166
Recommendations for Nursing Education ........................................................................ 169
Recommendations for Policy............................................................................................ 170
Chapter Eleven: Conclusion .................................................................................................... 174
References .............................................................................................................................. 176
Appendices ............................................................................................................................. 219

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List of Tables
Table 1: Inclusion and Exclusion Criteria .................................................................................. 35
Table 2: Sociodemographic characteristics by status of apathy of residents newly admitted to the
Canadian LTCF between 2015 and 2019 (N=157,596). ............................................................. 64
Table 3: The biopsychosocial predictors of apathy among Canadian LTCFs residents, 2015-2019
fiscal year.................................................................................................................................. 71
Table 4: Socio-demographics of newly admitted residents with dementia assessed between 2015
and 2019 by status of apathy. .................................................................................................... 93
Table 5: Logistic regression modelling the biopsychosocial characteristics of apathy among the
newly admitted Canadian LTCF residents with dementia (N=97,786) assessed between 2015 and
2019. ......................................................................................................................................... 94
Table 6: Sample Characteristics .............................................................................................. 120
Table 7: Key factors contributing to apathy reduction.............................................................. 121
Table 8:Characteristics of study participants (N=28) ............................................................... 132
Table 9: Practical solutions to the challenges encountered during the eBook club implementation
............................................................................................................................................... 141

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List of Figures
Figure 1: Overview of the research design ................................................................................. 29
Figure 2: Phases of the intervention studies ............................................................................... 29
Figure 3: PRISMA flow chart.................................................................................................... 34
Figure 4: Diagrammatic representation of key recommendations for optimal care for older people
with apathy ............................................................................................................................... 39
Figure 5: Disease diagnoses of residents newly admitted to the Canadian LTCF between 2015
and 2019 (N=157,596). ............................................................................................................. 65
Figure 6: Prevalence of apathy among the newly admitted Canadian LTCF residents by province
................................................................................................................................................. 66
Figure 7: The Biopsychosocial Model of Apathy in LTCF ........................................................ 67
Figure 8: Activity preferences of the Canadian LTCF newly admitted residents with dementia
(N=97,786) assessed between 2015 and 2019. ........................................................................... 99
Figure 9: Prevalence of apathy among newly admitted Canadian LTCF residents with dementia
who indicated preferences for different activities compared to those who did not (N=97,786). 100
Figure 10: Prevalence of apathy before and after the program ................................................. 122
Figure 11: Percentages of participants with self reported apathy vs no apathy pre and post
intervention. ............................................................................................................................ 134
Figure 12:Joint display of qualitative and quantitative findings on the impact of the eBook clubs
on apathy. ............................................................................................................................... 137

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Glossary
AD - Alzheimer's disease
ADHD – Attention Deficit Hyperactivity Disorder
ADLs- Activities of Daily Living
ADL-hierarchy - Activity of Daily Living Self-Performance Hierarchy Scale
ADRD- Alzheimer’s disease and related dementias
AES - Apathy Evaluation Scale
CASP - Critical Appraisal Skills Programme
CHESS - Change in Health, End-Stage Disease, and Signs and Symptoms Scale
CNAs – Certified Nursing Assistants
CPS - Cognitive Performance Scale
CTAAN – Center for Technology Adoption for Aging in the North
DAIR - Dementia Apathy Interview Rating
DCA – Diagnostic Criteria for Apathy
DRS- Depression Rating Scale
DSM-IV - Diagnostic and Statistical Manual of Mental Disorders 4th edition
DSM-V - Diagnostic and Statistical Manual of Mental Disorders 5th edition
FTD - Frontotemporal Dementia
GDB - Goal Directed Behaviors
ICD-10 - International Classification of Diseases 10th Revision
IADLs - Instrumental Activities of Daily Living
ICT – Information and Communication Technology
ISE - Index of Social Engagement

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LARS – Lillie Apathy Rating Scale
LPNs – Licensed Practical Nurses
LTCF(s) - Long Term Care Facilities
MCI - Mild Cognitive Impairment
MDS 2.0 - InterRAI Minimum Data Set
MMMR- Multimethod research
PRISMA - Preferred Reporting Items for Systematic Reviews and Meta-Analysis
PURS - Pressure Ulcer Risk Scale
QoL - Quality of Life
QUAL – Qualitative-driven study
QUAN – Quantitative-driven study
RCT – Randomized Controlled Trials
RQ – Research sub-Question
SAS – Statistical Analysis System
SSRIs - Selective Serotonin Reuptake Inhibitors
TBI - Traumatic Brain Injury
UNBC - University of Northern British Columbia

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Acknowledgement
First and foremost, I extend my deepest gratitude to my supervisor, Dr Shannon Freeman,
whose unwavering belief in my potential has been the driving force behind my academic
success. Your mentorship has shaped not only this dissertation but also my growth as a
researcher and scholar. I will forever be grateful for your patience, guidance, and the invaluable
lessons you have imparted.
I am also sincerely thankful to my committee members, Dr. Davina Banner, Dr. Joshua
Armstrong, and Dr. Melinda Martin-Khan, for your insights and thoughtful feedback, which
have significantly strengthened this research. Your expertise and encouragement have been
instrumental in shaping this work.
I am incredibly grateful to Rakuten Kobo and CTAAN for their generous support in
providing eReaders for this project. I also extend my appreciation to the University of Northern
British Columbia for providing me a stimulating academic environment, scholarship award, and
invaluable institutional support throughout my doctoral journey. Additionally, I acknowledge the
contributions of the participants of my studies including long-term care residents, recreational
staff, and managers.
To my dearest husband, Dr. Hezekiah Agboji, your belief in me has never wavered, even
during the moments when I doubted myself. To my amazing children, Samuel, Jane, Daniella
and Deborah, you have been my biggest inspiration. Your love, laughter, and patience during the
long nights of research and writing kept me going.
Finally, I give thanks to God Almighty, whose strength, grace, and wisdom have been my
anchor throughout this journey. Without Him, none of this would have been possible.

xii

Dedication
To God, who has been my strength, my wisdom, and my ever-present guide. Through
every challenge, He provided clarity; in moments of doubt, He renewed my spirit. This work is a
testament that with you Almighty God, all things are possible (Luke 18:27).
To my husband, my greatest blessing, confidant, and best friend. Your love, patience, and
sacrifices have made this achievement possible. Thank you for believing in me, supporting me,
and walking this journey with me. Your presence has been my greatest strength.
To my children, whose understanding, love, and boundless consideration have given me
the space and encouragement to pursue this dream. Your patience during my long nights of
study, your hugs that lifted my spirits, and your unwavering belief in me have meant more than
words can express. May this work serve as a reminder that dedication, faith, and perseverance
can turn dreams into reality.

xiii

Chapter One: Introduction
Apathy, defined as a reduction in activities of interest and social withdrawal, is a
pervasive yet underrecognized condition affecting individuals across the lifespan, including both
older and younger adults residing in long-term care facilities (LTCF) and community settings
(Marin, 1990; Robert et al., 2018). Traditionally, apathy has been associated with aging and
neurodegenerative disorders, such as Alzheimer’s disease and related dementias (ADRD) (Levy
& Dubois, 2006; Starkstein & Leentjens, 2008). However, research has increasingly
demonstrated that apathy is not limited to older populations but can also affect younger
individuals with neurological, psychiatric, or chronic medical conditions, as well as those with
disabilities or complex care needs in LTCF (Cummings et al., 2015).
Regardless of age, apathy has been linked to rapid cognitive decline, increased care
dependency, poorer quality of life, and higher healthcare costs (Brodaty et al., 2010; van Dalen
et al., 2018). Studies estimate that apathy affects between 15–30% of community-dwelling
individuals, with higher prevalence rates (50–70%) among LTCF residents (van der Linde et al.,
2016). Among individuals with neuropsychiatric disorders, such as Alzheimer’s, Parkinson’s
disease, schizophrenia, and traumatic brain injury (TBI), apathy rates can be as high as 80–90%
(Lanctôt et al., 2017; Zuidema et al., 2011). Despite its adverse impact on cognitive, emotional,
and social well-being, apathy remains poorly understood, misdiagnosed, and often left untreated
(Cerejeira et al., 2012).
Apathy in LTCF and community settings remains largely overlooked, leading to delayed
diagnosis and ineffective management strategies (Matmati et al., 2022). Several barriers
contribute to this challenge. First, the absence of a standardized definition and diagnostic criteria
has resulted in inconsistent detection and intervention (Robert et al., 2018). Unlike depression,
1

which is recognized in diagnostic manuals such as the DSM-V (American Psychological
Association [APA], 2013) and International Classification of Diseases 10th Revision (ICD-10)
(World Health Organization [WHO], 2019), apathy is often classified as a secondary symptom
rather than a distinct condition, limiting healthcare providers’ ability to diagnose and treat it
effectively (Levy & Dubois, 2006). Second, low awareness among caregivers and healthcare
providers exacerbates the issue. Many LTCF staff, clinicians, and informal caregivers
misinterpret apathy as a lack of effort, defiance, or laziness, particularly among younger
residents, leading to stigma and inadequate support (Jao et al., 2019). This lack of training and
awareness prevents early identification and appropriate interventions, increasing the risk of longterm disengagement and functional decline (Mele et al., 2020). A third major challenge is the
symptom overlap between apathy and other neuropsychiatric conditions, such as depression,
schizophrenia, and cognitive impairment (Starkstein & Leentjens, 2008).
While apathy is distinct from depression, it is frequently misdiagnosed, leading to
inappropriate pharmacological treatment (e.g., the overprescription of selective serotonin
reuptake inhibitors [SSRIs], which have been linked to worsening apathy symptoms) (Padala et
al., 2020). Lastly, methodological limitations in clinical trials have hindered the development of
effective, scalable interventions for apathy. Many studies face small sample sizes, inconsistent
assessment tools, and a lack of long-term follow-up, reducing the generalizability of findings
(Cummings et al., 2015). The absence of validated apathy-specific screening tools further
complicates efforts to track prevalence, risk factors, and treatment outcomes (Dickson et al.,
2022).
Given the high prevalence and negative consequences of apathy among both older and
younger LTCF residents, there is an urgent need for effective, evidence-based interventions.

2

While pharmacological approaches, such as methylphenidate and cholinesterase inhibitors, have
shown limited benefits (Theleritis et al., 2017), non-pharmacological interventions offer a safer,
more sustainable alternative (Goris et al., 2016). One promising intervention is the use of eBook
clubs, which combine cognitive stimulation, social interaction, and structured engagement
(Gitlow, 2014). Digital reading platforms (e.g., Kindle, Kobo, tablets, and smartphones) offer a
flexible and accessible way for individuals to participate in shared reading activities, regardless
of physical or cognitive limitations (Gitlow, 2014). By promoting active participation and social
connection, eBook clubs could serve as a low-cost, scalable approach to mitigating apathy in
LTCF residents and community-dwelling individuals (Saredakis et al., 2020).
This dissertation employs a multimethod research approach (Morse, 2003; Morse &
Niehaus, 2009) rooted in pragmatism, to investigate apathy among older adults residing in LTCF
and community settings guided by two theoretical perspectives: the Biopsychosocial Model of
health and illness (Engel, 1977) and Socioemotional Selectivity Theory (SST) (Carstensen,
1999). The overarching research question is "What are the barriers, facilitators, prevalence, and
risk factors of apathy among residents in LTCF and older adults in community settings, and how
effective is an eBook club intervention in mitigating apathy in these populations?". This question
was broken down into five sub-questions (RQ) and each sub-question constitute a Chapter as
follows:
1) What are the barriers and facilitators to optimal detection and intervention for apathy
among older adults? (Chapter Four)
2) What is the prevalence and what are the predictors for apathy among the Canadian LTCF
residents? (Chapter Five)

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3) What is the prevalence and what are the risk factors for apathy among the Canadian
LTCF residents with dementia? (Chapter Six)
4) What impact (s) does eBook club has on apathy among LTCF residents in rural Northern
British Columbia? (Chapter Seven)
5) What impact (s) does eBook club has on apathy among community dwellers in rural
Northern British Columbia? (Chapter Eight)
To this end, the three main objectives of this study are as follows:
1) To identify barriers and facilitators that influence the recognition and management of
apathy in LTCF and community settings (Chapter Four).
2) To determine the prevalence and risk factors of apathy among Canadian LTCF residents
with and without dementia (Chapters Five and Six).
3) To evaluate the impact of an eBook club intervention on self-reported apathy levels
among LTCF residents and community-dwelling older adults (Chapters Seven and
Eight).
Outline of this dissertation
This dissertation is based on a series of manuscripts published or submitted for
publication. Each manuscript corresponds to a chapter and addresses an overarching research
question or a sub-question. Chapter Two is the background chapter. It provides an overview of
the research topic and the researcher’s reflection. Chapters Three presents an explanation of the
research design, theoretical frameworks, sample/settings, data sources and cleaning. Chapter
Four is the literature review chapter and addresses RQ 1 by adopting an integrative review
approach to synthesize existing literature on apathy among older adults, focusing on its
definitions, dimensions, and distinguishing features compared to other conditions such as

4

depression. Chapter Five and Six focus on RQ 2 and 3, presenting the prevalence and predictors
of apathy among newly admitted LTCF residents, with an emphasis on identifying
biopsychosocial risk factors. Chapters Seven and Eight address RQ 4 and 5, discussing the
impacts of eBook clubs as a non-pharmacological intervention for mitigating apathy among
LTCF residents and rural community-dwelling older adults, with attention to outcomes such as
emotional engagement, cognitive stimulation, and social connection. Chapter Nine provides a
synthesis of findings from all preceding chapters, integrating insights to offer practical
recommendations for improving the care of individuals with apathy. This chapter also discusses
the theoretical contributions of the dissertation, highlights the strengths and limitations of the
studies and identifies directions for future research. Chapter Ten offers key recommendations for
nursing practice, nursing education and national policy providing broader insights into the
management of apathy among older adults in diverse settings. Lastly, chapter Eleven concludes
the dissertation.

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Chapter Two: Background
Apathy is a complex construct observable in both people with and without
neuropsychiatric, medical, and neurodegenerative disorders (Marin, 1990; Radakovic &
Abrahams, 2014). Historically, the term ‘apathy’ is a philosophical concept that has been in
existence well before its appearance in the medical literature in the 19 th century and its meaning
has changed significantly since then (Thant & Yager, 2019). It originally stemmed from the
Greek word “apatheia” or “a-pathos,” meaning “without passion” (Prange et al., 2018, p.614) or
“without feeling” (Thant & Yager, 2019, p. 709). Prior to 20th century, the concept had a
favorable view as it was perceived by the Stoic philosophers as a way of escaping from painful
experiences and be in a state of calmness and quietness (Prange et al. 2018). However, during the
20th century, apathy was viewed as a pathology because it was observed primarily among people
with psychiatric, neurological, and medical disorders (Marin, 1990). This observation led to the
first clinical definition of apathy as loss of motivation characterized by lack of interest or
involvement in usual activities (Marin, 1990). As Marin (1990) commented, apathy is “a state of
primary motivational impairment” (p.22) implying that it is distinguishable from other clinical
disorders. Marin (1990) further states that individuals whose motivational impairment is not
attributable to “a diminished level of consciousness, an intellectual deficit, or emotional distress”
(p.22) should be regarded as having apathy syndromes whereas individuals whose lack of
motivation is secondary to other disorders should be considered as having a feature or symptom
of the disorder in question (e.g., depression or dementia). In other words, apathy associated with
neuropsychiatric and neurodegenerative disorders are considered as symptoms while apathy
associated with non-neuropsychiatric and non-neurodegenerative disorders such as frontal lobe
injuries are referred to as syndromes.
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As indicated by Marin (1990), both the symptom and syndrome of apathy are of
considerable conceptual interest. Specifically, Marin’s definition of apathy implies that apathy
can be conceptualized as both a syndrome (independent of other disorders) and a symptom (cooccurring with other disorders). Based on this line of thinking, Marin (1990) described two
subtypes of apathy: (a) selective or relative apathy (commonly seen in healthy individuals and
occurs because the individual has not acquired or maintained interest in a particular activity or
interested in a broad range of activities); and (b) pervasive apathy (apathy secondary to other
disorders and aging). This conceptualization of apathy also speaks to the multidimensionality of
apathy constructs that are currently being advocated in the neuroscience literature (Massimo et
al., 2018).
During the 21st century, Stuss et al. (2000) argued that the definition of apathy as a lack
of motivation is inadequate because assessing motivation is problematic and usually requires
inferences based on observable behavior or affect (Stuss et al., 2000). Instead, Struss defined
apathy as a lack of responsiveness to stimuli (internal or external) as evidenced by a “lack of
self-initiated action" (Stuss et al., 2000, p.340). The definition proposed by Stuss et al. (2000),
has many advantages: (1) it provides more objective measures of behavior; (2) it does not define
apathy as a single definable state or syndrome; and (3) it allows apathy to be subdivided into
separable types (or domains). Like Marin’s conceptualization of apathy, Stuss et al. (2000)
categorized apathy according to three domains: (i) emotional apathy (lack of concern and limbic
affective input as reward sensitivity); (ii) cognitive apathy, (lack of initiated behavior due to
executive dysfunction as planning); and (iii) behavioral apathy, i.e., diminished self-initiated
actions (Stuss et al., 2000). This conceptualization of apathy supports the notion that apathy is a
multidimensional construct.

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Levy and Dubois (2006) reframed the definition of apathy as "the quantitative reduction
of self-generated voluntary and goal-directed behaviors" (Levy and Dubois, 2006). Accordingly,
Levy and Dubois (2006) argued that: (a) apathy is an observable state that can subsequently be
quantified; (b) apathy is a pathology of voluntary action or goal-directed behavior ([GDB]- a
series of interrelated processes by which an internal state is translated into the achievement of a
goal through action) (Schultz, 1999); and (c) the mechanisms underlying apathy are related to
disruptions in the elaboration, execution, or control of GDB (Levy and Dubois, 2006).
Contributing to a model of apathy that is partially consistent with previous conceptualizations,
Levy and Dubois (2006) emphasized the multifactorial nature of apathy by defining three
subtypes based on impairment of different prefrontal cortex-basal ganglia circuits: (1) emotionalaffective apathy refers to the inability to associate affective and emotional cues with ongoing and
upcoming behaviors and manifests as indifference or flat affect (unconcern); (2) cognitive apathy
refers to impaired elaboration of action plans; and (3) auto-activating apathy refers to difficulty
initiating the motor program required to perform the behavior (Levy and Dubois, 2006). Taken
together, these three subtypes of apathy can be described as cognitive-behavior-emotion
framework of apathy. The social domain of apathy is missing within the existing framework of
apathy (Ang et al., 2017; Sockeel et al. 2006). In agreement with Marin’s conceptualization of
apathy, Starkstein and Leentjens (2008) suggest that apathy is a syndrome (independent of other
disorders) which overlaps with other neuropsychiatric syndromes, including abulia (loss of will
power to carry out day to day activities), akinetic syndromes (deficit in mental processing that
can be reversed by external stimulation), despair and demoralization (lack of concern about the
future), depression or anhedonia (loss of interest in things one once enjoyed) and the negative

8

syndrome of schizophrenia implying that it is a distinct disorder that warrants investigation
(Robert et al., 2009; Starkstein & Leentjens, 2008)
In clinical practice settings, apathy is not explicitly defined in the DSM IV and V instead
it is referred to as a type of behavioral symptom of neurocognitive disorders (Agboji et al.,
2024a; APA, 2013; Cerejeira et al., 2012). As a result, different criteria by which apathy can be
objectively evaluated in clinical practice have been proposed. For example, Marin in his
pioneering work established four diagnostic criteria for apathy which are: (1) lack of motivation
in comparison to the individual’s previous level of functioning or the standards of his or her age
and culture as reported by either by self or proxy account (2) presence of at least 1 symptom
belonging to each of the following three domains of apathy: goal-directed behavior (lack of
effort, dependency on others to structure activity), goal-directed cognition (lack of interest in
learning new things, or in new experiences, lack of concern about one’s personal problems) and
emotion (unchanging affect, lack of emotional responsivity to positive or negative events); (3)
the symptoms cause clinically significant distress or impairment in social, occupational, or other
important areas of functioning; and (4) the symptoms are not due to diminished level of
consciousness or the direct physiological effects of a substance such as drug abuse or negative
effects of medication (Marin, 1991). Recently, the criteria for apathy have been revised by an
international consensus group focusing on apathy in brain disorders including researchers and
healthcare professionals, a representative from a regulatory body, and a representative from the
pharmaceutical industry (Robert et al., 2018). A two-step approach was employed to arrive at a
consensus: web-surveys followed by a consensus meeting. The new diagnostic criteria provide
that: (1) apathy is defined as "a quantitative reduction in goal-directed activity compared with the
person's previous level of functioning"; and (2) apathy is a persistent state whose symptoms

9

should be observed in at least two out of the three dimensions of apathy comprising of
behavior/cognition; emotion (including spontaneous emotion and emotion in response to the
environment/others); and social interaction (including spontaneous social initiative and social
interaction stimulated by the environment/others) (Robert et al., 2018). While existing diagnostic
criteria for apathy, such as those by Marin (1991) and Robert et al. (2009), provide valuable
frameworks, they do not specifically address social withdrawal and reduced social interaction as
central aspects of apathy. These behaviors, which are observable and clinically significant, often
reflect the emotional and cognitive disengagement seen in apathy (Marin, 1991; Robert et al.,
2009).
For this dissertation, apathy is defined as loss of interest characterized by “withdrawal
from activities of interest” and/ or “reduction in social interactions” (Volicer et al., 2013, p.418).
Adopting this definition offers both conceptual and practical benefits. Conceptually, it provides a
more comprehensive understanding of apathy by linking it to observable social behaviors,
including withdrawal from activities and reduced social interaction (Volicer et al., 2013). This
shift broadens the scope of apathy beyond just motivational or emotional disengagement,
incorporating the social aspects that are integral to the well-being of older adults, especially in
long term care facilities (LTCF) (Starkstein & Leentjens, 2008). In addition, by recognizing
these behaviors as key indicators, the definition aligns more closely with real-world experiences
of apathy in populations such as residents of LTCF, where social interaction and engagement are
important components of daily life. From a practical perspective, social withdrawal and
disengagement are behaviors that caregivers and healthcare providers can observe and document
consistently. This makes the definition not only more accessible but also actionable, enabling
healthcare professionals to more effectively identify and track apathy in older adults.

10

Furthermore, this definition can inform intervention strategies by providing clear behavioral
targets, helping to improve the management of apathy and, in turn, the quality of care and life for
individuals living in LTCF. More importantly, this operational focus facilitates the use of
existing tools, such as the MDS 2.0 dataset, making it possible to quantify apathy in a way that is
both practical and meaningful in real-world healthcare settings.
Apathy is a transdiagnostic symptom that occurs across a wide range of neurological,
psychiatric, and medical conditions, affecting individuals globally (Le Heron et al., 2018;
Starkstein & Leentjens, 2008). Research indicates that 10-30% of the global population may
experience apathy at some point in their lives, though these estimates vary depending on the
population studied and the diagnostic criteria used (Le Heron et al., 2018). Apathy is especially
prevalent among individuals with neurodegenerative diseases, such as Alzheimer’s disease,
where it affects 30-70% of patients, and Parkinson’s disease, with prevalence rates ranging from
20-40% (van Reekum et al., 2005). Additionally, apathy is commonly observed in psychiatric
disorders, including depression, where it is reported in up to 70% of cases, and in schizophrenia,
with prevalence rates of 40-50% (Marin, 1991). Among stroke survivors, apathy occurs in about
20-40% of individuals, while those with traumatic brain injury (TBI) report apathy at rates of 2030% (Starkstein & Leentjens, 2008). While apathy often overlaps with these disorders, studies
have shown that it can occur independently, and therefore it is conceptualized as a syndrome
(Ang et al., 2017; Ayers et al., 2017; Brodaty et al., 2010; Marin, 1990)
The prevalence of apathy is influenced by demographic factors, particularly age and the
health profile of the population. In high-income countries with aging populations, such as the
United States and Japan, apathy is more commonly reported due to the higher prevalence of
neurodegenerative diseases, including dementia. For example, in the U.S., 30-50% of older

11

adults with cognitive impairment or dementia exhibit symptoms of apathy (Clarke et al., 2008).
Similarly, in Japan, where the aging population is rapidly increasing, apathy is a growing
concern in older adult care, with prevalence rates comparable to those seen in Western countries
(Takahashi et al., 2017). In contrast, low- and middle-income countries tend to report lower
prevalence rates, although this is likely due to underreporting and limited access to mental health
services and diagnostic tools (WHO, 2017).
Furthermore, the prevalence of apathy varies by setting. Within community settings,
apathy is often linked to depression, chronic illness, and social isolation (Brodaty et al., 2010; Le
Heron et al., 2018). Studies estimate that approximately 5-20% of community-dwelling adults
experience apathy, with higher rates seen among older adults, particularly due to loneliness,
physical decline, and cognitive impairment (Brodaty et al., 2010). Apathy is also present in
younger populations, especially those affected by mental health disorders such as depression,
anxiety, and chronic stress (Le Heron et al., 2018). By contrast, in LTCF, apathy is one of the
most common neuropsychiatric symptoms, particularly in residents with dementia or other
chronic conditions. Prevalence rates of apathy in LTCF range from 50-70%, making it a
significant concern for caregivers and healthcare providers (Landes et al., 2005).
Despite its prevalence, apathy remains poorly understood, partly due to its multifactorial
nature, which spans biological, psychological, and social dimensions (Bolton & Gillett, 2019;
Marin, 1990). Research has also shown that apathy is often conflated with other conditions, such
as depression, which complicates its accurate detection and diagnosis (Agboji et al., 2024a;
Starkstein & Leentjens, 2008; Robert et al., 2018). A significant gap in the literature is the lack
of understanding of the contextual factors that influence apathy. In LTCF, systemic challenges
such as inadequate caregiver training, the absence of standardized assessment tools, and resource

12

limitations hinder effective management (Lanctôt et al., 2017; Robert et al., 2018). Similarly,
older adults in rural communities face unique difficulties, including limited social opportunities,
geographic isolation, and restricted access to healthcare, all of which make early detection and
treatment of apathy especially challenging (Freeman et al., 2020; Kelly et al., 2017). More
importantly, studies examining apathy in the Canadian context is limited.
Several pharmacological and non-pharmacological interventions for apathy have been
proposed. Medications such as methylphenidate (a psychostimulant) and acetylcholinesterase
inhibitors (colloquially known as anti-dementia) have been shown to be effective against apathy
in people with dementia (Drijgers et al., 2009; Theleritis et al., 2017). However, these
medications have been observed to have serious adverse effects (Seitz et al., 2012). As a result,
non-pharmacological interventions are mostly preferred (Seitz et al., 2012). These include but
are not limited to art, music therapy, multisensory stimulation, staff education and cognitive
rehabilitation (Goris et al., 2016; Holmes et al., 2006; Theleritis et al., 2018). In addition,
technologies such as virtual reality (VR) and repetitive transcranial magnetic stimulation have
also been found to mitigate apathy (Leone et al., 2013; Padala et al., 2018b; Saredakis et al.,
2020). Despite the growing interest in these non-pharmacological interventions, they can be
costly and there is insufficient understanding of their feasibility, scalability, and effectiveness
across care settings (Gitlow, 2014). For example, music and pet-assisted therapies can improve
mood and reduce apathy but face scalability challenges due to specialized training, logistical
requirements, and safety concerns (Tang et al., 2018; Bernabei et al., 2013; Zisselman et al.,
1996). Thus, innovative intervention, such as an eBook club is much needed to mitigate apathy
among individuals in LTCF and community settings.

13

Personal Reflections
Being a nurse with over 20 years of experience working with older adults, my deep
passion for improving the quality of care and life for those I care for has always driven me into
action. Early in my career, I found myself facing a challenging issue that I didn’t fully
understand, that is, apathy. Many of the residents I worked with exhibited signs of withdrawal,
disinterest, and emotional flatness. Despite my best efforts to motivate them to participate in
activities, nothing seemed to make a difference. At the time, I mistakenly believed that these
behaviors were a form of depression. In response, antidepressants were often prescribed to
address these symptoms. However, despite the use of these medications, many residents showed
little to no improvement. This left me wondering: were we treating the right condition?
This unanswered question pushed me to dive deeper into the literature, where I learned
that apathy is distinct from depression, though the two often appear similar. This realization
opened my eyes to the complexity of apathy and its potential impact on the lives of older adults.
It became clear to me that we had been missing something important in their care. Determined to
address this gap, I set out to study apathy in depth and explore ways to better support older adults
who struggle with it.
My nursing experience has always been grounded in a commitment to person-centered
care. I have seen firsthand that every resident has unique needs, preferences, and ways of
engaging with the world around them. When I designed the eBook club intervention, I wanted to
make sure it reflected that understanding. I ensured the intervention was flexible and adaptable,
allowing residents to engage at their own pace, in a way that felt most comfortable to them. The
goal was to make the intervention inclusive, respecting the diverse cognitive abilities and
interests of each individual. In addition, my years of work in LTCF and rural communities

14

shaped the selection of the study population. While these groups are essential to understanding
apathy, I realize that including a more diverse sample could have given a broader perspective on
how apathy affects older adults in different environments and cultural contexts.
That said, I am cognizance of the fact that my nursing background may have introduced
certain biases into the study (Polit & Beck, 2017). My experiences with non-pharmacological
interventions might have likely led to prioritizing these methods. While the eBook club
intervention proved successful, I acknowledge that exploring other treatment options might have
further enriched the study. Additionally, my strong belief in the effectiveness of such
interventions may have led to confirmation bias (Polit & Beck, 2017), where I unintentionally
emphasized positive outcomes and downplayed challenges.
To minimize these biases, I made a conscious effort to engage in reflexivity throughout
the research process. Reflexivity, in my view, involves being aware of how my personal
experiences, beliefs, and professional background shape my approach to the study (Finlay,
2002). I kept a reflective journal, documenting my thoughts and feelings as I moved through the
research. This practice helped me identify any biases early on and adjust my approach as needed.
Reflexivity also allowed me to remain open to new perspectives, even when they challenged my
initial assumptions, helping me embrace fresh ideas and insights (Finlay, 2002). I also sought
feedback from my supervisor, committee members, and experts in different fields to broaden my
perspective. Their input helped me maintain objectivity, particularly during data analysis and
interpretation (Finlay, 2002).

15

Chapter Three: Methodology
This chapter outlines the methods employed in this dissertation. It provides an
explanation of the research design, research setting/sample, data sources and cleaning.
Research Design
In this study, the multimethod approach was selected. Multimethod research, also
referred to as multiple method research, is broadly defined as “the practice of employing two or
more different methods or styles of research within the same study or research program, rather
than confining the research to the use of a single method” (Anguera et al., 2018, p. 2760). HesseBiber & Johnson (2015) described it as studies in which multiple types of qualitative or
quantitative data are collected in a single research project. That is, two or more separate research
projects are conducted to address different aspects of a research question (each being complete
on its own) (Hesse-Biber & Johnson, 2015). Morse & Niehaus (2009) added that a multimethod
design is “a scientifically rigorous research program comprised of series of related qualitative
and/or quantitative research projects over time, driven by the theoretical thrust of the program”
(p.148) implying that a multimethod research program “may include projects using different
single methods or include one or more projects using mixed methods designs” (p.149). The
multimethod research is rooted in pragmatism, a philosophical belief allowing researcher to use
different tools that may be useful in different research contexts (Creswell & Plano Clark, 2018).
In designing multimethod research, there are two key principles that must be followed:
primary theoretical drive and the role of the secondary component, both of which define the
research framework and the way different methods interact within the study (Morse, 2003). The
primary theoretical drive in multimethod research design serves as the foundation for how data is

16

collected, analyzed, and interpreted. In this type of research, two or more distinct research
projects are conducted, each designed to address a different aspect of a broader research question
(Morse, 2003). For example, if one study within the multimethod research is qualitative, it will
follow an inductive methodology, focusing on the exploration of themes, narratives, and
subjective experiences. If another study within the same research framework is quantitative, it
will follow a deductive methodology, emphasizing statistical analysis and objective
measurement. The theoretical drive of each separate study remains distinct, and there is no
blending of methodologies within a single research phase (Morse, 2003).
In a multimethod research, Morse (2003) emphasizes that the choice of design should be
driven by the specific research questions and objectives at hand. Morse outlines various
configurations, such as concurrent and sequential designs, each serving different purposes. For
instance, a concurrent design (denoted as [QUAL + QUAN]) involves conducting qualitative and
quantitative studies simultaneously, allowing for a comprehensive exploration of a phenomenon
from multiple perspectives. In contrast, a sequential design (represented as [QUAL → QUAN]
or [QUAN → QUAL]) entails conducting one study after another, where the findings from the
initial study inform the subsequent one. The selection between these designs depends on factors
such as the nature of the research questions, the desired depth of understanding, and the
resources available. Morse (2003) advocates for a thoughtful alignment between the research
objectives and the chosen methodological approach to ensure the study's effectiveness and
coherence. The uppercase letters: QUAL indicates a qualitative primary drive, and QUAN
denotes a quantitative primary drive. The plus sign (+) indicates that methods are applied
simultaneously, whereas an arrow (→) represents sequential directionality (Morse, 2003).
Further, Morse (2003) states that when the theoretical drive is qualitative (QUAL), the sample is

17

typically small and purposefully selected. If a secondary quantitative component (quan) is
included, it is important to have external normative values available for interpreting the
quantitative data due to potential sampling limitations. Conversely, when the theoretical drive is
quantitative (QUAN), and there's a secondary qualitative component (qual), the sample for the
qualitative part should be purposefully selected from the main study to ensure coherence
between the components (Morse, 2003).
In alignment with Morse's (2003) framework, each study in this dissertation is
independently planned and conducted to answer a particular overarching question (see Figure 1).
The first study was an integrative review aimed at identifying barriers and facilitators that
influence apathy recognition, assessment, and management in LTCF and community settings.
This review systematically synthesized findings from existing literature to establish a strong
theoretical and empirical foundation for the subsequent empirical studies (Whittemore & Knafl,
2005). A qualitative-dominant integrative review methodology was employed. Thematic analysis
was conducted to identify recurring patterns in apathy care and highlight gaps in research and
clinical practice (Braun & Clarke, 2006). This study was essential in informing the research
design of the primary data collection studies, ensuring that empirical investigations aligned with
existing knowledge and identified areas requiring further exploration
The second study employed a cross-sectional quantitative approach to examine the
prevalence of apathy among newly admitted LTCF residents in Canada. Given that apathy is
frequently underdiagnosed or misinterpreted in long-term care settings (Lanctôt et al., 2017), the
study utilized secondary data from the InterRAI Minimum Dataset (MDS 2.0), a widely
recognized tool for assessing health and behavioral needs of residents in LTCF (Hirdes et al.,
2008). This dataset was analyzed to estimate the proportion of residents presenting with

18

clinically significant apathy. Descriptive statistical analyses were used to calculate prevalence
rates, while logistic regression models were applied to identify potential demographic and
clinical predictors of apathy, including cognitive impairment, depressive symptoms, and physical
frailty (van der Linde et al., 2016). This study was pivotal in establishing the epidemiologic
baseline, providing quantitative evidence on the burden of apathy within LTCF.
Building upon the prevalence findings, the third study examined individual and facilitylevel predictors of apathy among LTCF residents. Previous research has suggested that both
personal and environmental factors contribute to apathy risk (Radakovic & Abrahams, 2018);
thus, this study aimed to determine how factors such as facility size, social engagement
opportunities, and healthcare access influenced apathy prevalence (Jao et al., 2019). Inferential
statistical techniques, including multivariable logistic regression models, were used to determine
the strongest predictors of apathy among LTCF residents (Mitchell et al., 2021). This study
provided deep insights into modifiable and non-modifiable risk factors, offering valuable
information for designing targeted apathy interventions.
The fourth study employed a quasi-experimental mixed methods approach to evaluate the
effectiveness of an eBook club intervention in reducing apathy among LTCF residents. Given the
growing interest in non-pharmacological interventions for apathy management (Goris et al.,
2016), this study sought to assess whether structured reading activities could stimulate
engagement and improve social participation. A pre- and post-intervention design was
implemented, in which participants engaged in weekly eBook reading sessions using digital
reading platforms such as Kindle and Kobo. Quantitative analyses included paired t-tests and
McNemar’s test to compare pre- and post-intervention apathy scores (Fagerland et al., 2013).

19

Further, semi-structured interviews were conducted to explore participants’ subjective
experiences, with qualitative data analyzed using thematic analysis (Braun & Clarke, 2006).
Apathy was measured using the three-item subset of the Geriatric Depression Scale
(GDS-3A), which has been validated for assessing apathy in older adults (Adam, 2001; Bertens
et al., 2017; Grool et al., 2014; Ligthart et al., 2012).While more comprehensive apathy scales
such as the Apathy Evaluation Scale (AES; Marin et al., 1991) or the Apathy Inventory (Robert
et al., 2002) may offer greater sensitivity across cognitive, emotional, and behavioral domains,
these tools can be burdensome to administer, particularly for individuals with cognitive
impairment, fatigue, or low tolerance for lengthy assessments. Thus, the GDS-3A was selected
for the intervention studies because it is brief, easy to administered and suitable for older adults
in both long-term care and community settings, some of whom might find longer assessments
burdensome. Additionally, the GDS-3A captures core behavioral aspects of apathy relevant to
the intervention's focus on engagement, and its results were intended to be interpreted alongside,
and enriched by, the extensive qualitative data gathered, providing a more comprehensive
understanding of the intervention's impact.
Extending the intervention beyond LTCF, the fifth study examined the impact of the
eBook club intervention on community-dwelling older adults. While much research on apathy
has focused on institutionalized populations, the experience of older adults living independently
remains underexplored (van Dalen et al., 2018). This study followed a similar quasi experimental
mixed-methods pre- and post-intervention design as the fourth study but focused on individuals
residing in three rural communities in Northern British Columbia. Participants engaged in
structured group reading sessions, designed to enhance cognitive and social engagement, and
their pre- and post-intervention apathy levels were assessed using the GDS-3A scale ((Adam,

20

2001; Bertens et al., 2017; Grool et al., 2014; Ligthart et al., 2012). Qualitative interviews
provided deeper insights into the feasibility, acceptability, and perceived benefits of the
intervention in a community setting (Gitlow, 2014).
Theoretical framework
This study was informed by two complementary theoretical frameworks: the
Biopsychosocial Model of Health and Illness (Engel, 1977) and Socioemotional Selectivity
Theory (SST) (Carstensen et al., 1999). The Biopsychosocial Model of health and illness (Engel,
1977) was used to guide the quantitative components, examining apathy as a condition shaped by
biological, psychological, and social factors. This framework supported the analysis of largescale data to identify prevalence and key predictors such as cognitive impairment and depression
(studies two and three). For the intervention phase (study five), the Socioemotional Selectivity
Theory (Carstensen et al., 1999) was drawn upon to understand why the eBook club program
which promoted social connection, engagement, and emotionally fulfilling activities was
effective in reducing apathy.
The Biopsychosocial Model of health and illness (Engel, 1977) was chosen to guide the
quantitative component of this study because it offers a comprehensive and integrated view of
health, recognizing that health outcomes such as apathy are not caused by one factor alone, but
by the interplay of biological, psychological, and social factors (Marin & Wilkosz, 2005;
Massimo et al., 2018). This model is especially relevant in LTCF, where residents often face
multiple challenges such as chronic illness, cognitive impairment, and environmental understimulation (Jao et al., 2015; Radakovic & Abrahams, 2018; Starkstein & Leentjens, 2008).
These overlapping issues contribute to the development and persistence of apathy in ways that
are not adequately captured by more traditional models. For example, the Biomedical Model has
21

been valuable in diagnosing medical conditions as it focuses mainly on physical causes of
disease (Engel, 1977), but it does not account for the emotional or environmental factors that
often underlie apathy in older adults (Jao et al., 2015). Similarly, the Health Belief Model
(Rosenstock, 1974) emphasizes personal beliefs and decisions about health risks. This model
assumes a level of cognitive awareness and motivation that may not be present in residents with
dementia (Horning et al., 2014; Dening et al., 2021).
For the second intervention study (study five), the Socioemotional Selectivity Theory
(Carstensen et al., 1999) was used to explain how older adults shift their priorities as they age,
especially when they perceive time as limited. The Socioemotional Selectivity Theory suggests
that emotional well-being and meaningful social connections become more important than
seeking new experiences or information. This made this model a strong fit for understanding
how and why participants responded positively to the eBook club intervention. Other theories
were considered but did not align as closely with the study aims. For instance, SelfDetermination Theory (SDT) (Deci & Ryan, 2000), which focuses on autonomy, competence,
and relatedness, is often applied to motivation but assumes that individuals are actively goal
setting. This is less applicable to populations with cognitive impairment or diminished
motivation, where emotional meaning may drive engagement more than personal achievement.
Erikson’s psychosocial theory (1959), Activity Theory (Havighurst & Albrecht, 1953) and
Continuity Theory (Atchley, 1989) are useful for understanding broad aging patterns but offer
less insight into the specific emotional and motivational changes that influence activity
engagement among older adults.
By using the Biopsychosocial Model and Socioemotional Selectivity Theory, this study
was able to explore both the larger structural factors that shape apathy and the personal

22

experiences and motivations of older adults participating in the eBook club intervention. These
frameworks worked in tandem to support a multi-method approach, offering both depth and
breadth in understanding the complexity and multidimensionality of apathy among individuals in
LTCF and older adults in community settings, and thus contribute to the body of knowledge in
both apathy and aging research.
Sample/settings
The sample in studies one to three consisted of all newly admitted LTCF residents
assessed between 2014 and 2019 fiscal year (N = 157,596) from across Canada including Yukon,
British Columbia, Alberta, Saskatchewan, Ontario, and Newfoundland and partial coverage for
Manitoba, New Brunswick, and Nova Scotia. Residents in comatose states or with missing
relevant information were excluded. Participants in study four were recruited from four LTCF in
rural Northern BC (N=20) while study five was conducted in three rural communities in
Northern British Columbia (N=28). Inclusion criteria required participants to (1) have an interest
in reading, (2) be able to read and speak English, (3) have the ability or willingness to use digital
technology, and (4) provide informed consent. Exclusions are residents who have no capacity to
provide informed consents.
Data source
Dataset for studies two and three were obtained from the Continuing Care Reporting
System (CCRS) database of the Canadian Institute for Health Information (CIHI) (see details in
Chapters Five and Six). The CCRS consists of the InterRAI Minimum Data Set (MDS 2.0). The
MDS 2.0 is a mandated standardized assessment instrument for use in most LTCF across Canada
and provides comprehensive personal level information about residents that informs decisionmaking in developing a care plan that reflects their needs, preferences, and strengths (Hirdes et
23

al., 2011). Embedded within the MDS 2.0 are standardized, minimal assessment and screening
tools designed to assess residents’ sociodemographic, clinical, psychological, and functional
characteristics (Morris et al., 2012). Sociodemographic characteristics include but are not limited
to sex, age, marital status, language, lived alone, and facility/provincial information. Clinical,
psychological, and functional characteristics include disease diagnoses, cognitive status, fluid
status, pain, oral problems, skin problems, mobility issues, to mention but a few (Morris et al.,
2012). This assessment’s output results in clinical algorithms and indicators referred to as the
outcome scales and Clinical Assessment Protocols (CAPs), which provide information about a
resident’s health problems or functional status and guides the care planning process (Morris et
al., 2012). For studies four and five, data were gathered through self-report questionnaires (GDS3A) and semi structured interviews (see Appendices 5 and 6).
Data cleaning
Demographic characteristics were extracted directly from the InterRAI MDS 2.0 dataset
and used to describe the study population and explore associations with apathy. Key
demographic variables included age, sex, marital status, language, education level, and province
of residence. All age groups represented in the dataset were retained. Data cleaning for
demographic variables focused on checking for missing, inconsistent, or ambiguous entries.
These demographic variables were incorporated into both descriptive statistics and logistic
regression models to examine prevalence patterns, group differences, and their potential role as
predictors or risk factors of apathy. Retaining the full demographic diversity of the sample
ensured that findings were representative of the broader long-term care population in Canada. In
addition, several variables from the InterRAI MDS 2.0 dataset were recoded and transformed to
facilitate statistical analysis and to align with the theoretical frameworks guiding the study and in
24

alignment with InterRAI guidelines. Apathy was operationalized using behavioral indicators
available within the MDS, in a manner consistent with definitions found in the existing literature
(Volicer et al., 2013). These indicators reflected observable patterns such as withdrawal from
activities and reduced social interaction, which are central to the study’s conceptualization of
apathy. Cognitive status was measured using the Cognitive Performance Scale (CPS) and was
subsequently categorized into clinically meaningful levels to reflect varying degrees of cognitive
impairment. This recoding enabled clearer interpretation of cognitive functioning as a predictor
of apathy. Similarly, depression was measured using the Depression Rating Scale (DRS), a
validated subscale embedded within the InterRAI MDS 2.0 assessment system (Burrows et al.,
2000; Hirdes et al., 2003). The DRS scores were recoded into three levels: 0–2 (no or mild
symptoms), 3–5 (moderate symptoms), and 6–14 (severe symptoms), following the classification
by Burrows et al. (2000). A score of 3 or greater was also used as a cutoff to indicate possible
presence of depressive symptoms, as recommended by Hirdes et al. (2008). This classification
facilitated the use of depression as an independent variable in regression analyses examining
psychological predictors of apathy. Only records of residents who were newly admitted to LTCF
during the study period were retained. Cases were excluded if admission data were incomplete or
if apathy-related variables were missing, to ensure consistency in baseline assessments across all
residents.
Ethical considerations
This study was conducted in accordance with the Tri-Council Policy Statement (TCPS 2,
2018). For the secondary data analysis, fully anonymized data from the InterRAI MDS 2.0 were
used under agreement with CIHI. As no identifying information was included, individual consent
was not required, and all data access protocols were strictly followed. In the intervention phase,
25

ethical approval was obtained through BC Harmonized Ethics Review process in conjunction
with the University of Northern British Columbia (UNBC) Research Ethics Board (REB#H2102006). Only individuals with the capacity to provide informed consent were eligible to
participate. All prospective participants were given a copy of the information letter at least two
weeks prior to enrollment, allowing time to review and ask questions. Decision-making capacity
was formally assessed using the University of California, San Diego Brief Assessment of
Capacity to Consent (UBACC) (Jeste et al., 2007). Only those who demonstrated sufficient
understanding and reasoning ability, as indicated by their UBACC assessment, were enrolled in
the study. Participants were informed that their participation was voluntary, and they could
withdraw at any time without consequence. The eBook club intervention was low-risk, designed
to be flexible, inclusive, and respectful of individual preferences. All data collected during the
study were de-identified and securely stored on password-protected systems accessible only to
the research team. Throughout the research process, the principles of respect for persons, concern
for welfare, and justice guided all ethical decisions, ensuring the protection and dignity of all
participants.
Brief description of the intervention studies
There were two interventions (chapters seven and eight) developed to mitigate apathy by
fostering cognitive, emotional, and social engagement. The first intervention conducted in four
LTCF served as the initial pilot, where a thematic analysis was conducted without pre-imposing
a theoretical lens (chapter seven). This open approach was chosen to allow participant voices and
experiences to guide the understanding of how the eBook club influenced apathy. The second
intervention (chapter 8) where early inductive findings from the first intervention study guided
the selection of the Socioemotional Selectivity Theory took place in three rural communities in
26

Northern BC. Materials used in the interventions included Kobo eReaders, participants' personal
digital devices, free Kobo accounts, access to the public library via Overdrive app, pre-loaded or
downloadable eBooks, reading trackers for independent readers, as well as participant
information letters, consent forms, and pre/post-interview protocols.
The procedures followed a three-phase structure: pre-intervention, implementation, and
post-intervention (Figure 2). During the pre-intervention phase, participants completed a semistructured interview that assessed reading preferences and choice of books to read. Kobo
accounts were created, and eBooks were either pre-loaded on Kobo devices or made available
via the Kobo app on personal devices. Technical support was provided as needed. Weekly eBook
club sessions in LTCF were facilitated by the PhD student researcher and facility staff
(recreational staff), while trained research assistants and the PhD student researcher facilitated
the eBook club program in the community settings. Group reading sessions in both settings
involved shared reading and discussion, while independent readers used a reading tracker to
reflect on their engagement. Post-intervention interviews included both qualitative feedback and
administration of an apathy questionnaire (GDS-3A).
The intervention was delivered in person, both in LTCF and in rural community settings
(library) across Northern BC. For those who choose to read after group reading sessions,
engagement also occurred digitally via the Kobo app. In terms of duration and intensity, the
intervention ran for twelve weeks at each LTCF sites, and eight weeks per rural community site.
The frequency was set at once per week in LTCF as it was integrated into the existing weekly
activity schedule within the facilities, ensuring it aligned with established routines and could be
sustained with support from facility staff, and for the community settings, the group reading
sessions occurred once weekly based on participants’ preferences. In addition, the variation in

27

the duration of the intervention between the LTCF and community settings was influenced by a
combination of logistical and contextual factors, including staff availability, setting-specific
constraints, and participant preferences. In the LTCF, the intervention was delivered consistently
over a 12-week period across all sites. This extended duration was feasible due to the structured
nature of institutional routines, the availability of staff to co-facilitate sessions, and the ability to
incorporate the eBook club into the facilities’ regular programming schedules. The longer
timeline also allowed for greater continuity and deeper engagement among residents. In contrast,
the community-based intervention was limited to eight weeks, primarily due to seasonal timing
and participant availability. Many participants had upcoming summer holidays, which
constrained the feasible length of their involvement. To respect these preferences and ensure full
participation, the program was shortened accordingly.
The intervention was tailored in multiple ways. Book selections were based on
participants’ stated preferences during the initial interview, and participants had the choice of
joining group sessions and supplement with reading independently. Session pacing and structure
were adjusted based on individual and group needs. Minor modifications were made during
implementation, such as variation in duration between sites and iterative adaptation of reading
materials based on group interest. These changes reflected a responsive and person-centered
approach. To promote intervention fidelity, structured session plans were developed, and reading
trackers were used to monitor individual participation. The PhD student researcher was directly
involved in all sites, ensuring consistency in implementation. Fidelity was assessed informally
through observation, weekly check-ins, and participant self-report.

28

Figure 1: Overview of the research design

PreIntervention

• Participant consent
• Data collection 1
• Kobo account and eReader set up

Implementation

• Orientation
• Weekly group sessions (once per week)
• Attendance tracking

PostIntervention

• Data collection II

Figure 2: Phases of the intervention studies

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Chapter Four: Apathy in Older Adults with and without Dementia: An Integrative Review
of Barriers and Facilitators to Care
This chapter addresses RQ 1 “What are the barriers and facilitators to optimal detection
and intervention for apathy among older adults?” and has been published in SAGE Open Journal
as:
Agboji, A., Freeman, S., Banner, D., Duchesne, A., Armstrong, J., & Martin-Khan, M. (2024).
Apathy in Older Adults With and Without Dementia: An Integrative Review of Barriers and
Facilitators to Care. Sage Open, 14(2), 1-25. https://doi.org/10.1177/21582440241241882
Abstract
Despite the detrimental impact of apathy on the cognition, functional abilities, and quality
of life of older people, it is often under-rated and under-managed. This integrative review
provides a comprehensive overview of the barriers as well as potential facilitators to optimal care
for older adults with apathy. A systematic search for relevant literature using Whittemore and
Knafl’s framework was conducted to identify factors that inhibit or facilitate optimal detection
and intervention for apathy in older people with and without dementia. Four key barriers were
identified including lack of standardized definition of apathy, lack of awareness, overlap with
other disorders, and methodological limitations of clinical trials. Key facilitators included
involvement of the dyad (persons with apathy and their families/formal caregivers), education,
training and experience, and adoption of new and innovative method of screening and
intervention. To provide optimal care for older people with apathy, there is need to adopt a
multifaceted approach, including the development of precise definition of apathy, consideration
of person-centered approach, caregiver training, and best practice guidelines for management of
30

apathy. Future research and practice into effective interventions for management of apathy in
older adults, and enhanced education and training for healthcare professionals, are needed to
ensure quality of care for older adults with apathy.
Introduction
Apathy is a prevalent behavioral and psychological symptom of dementia (BPSD) that is
observed across various forms and stages of dementia, including mild cognitive impairment
(MCI), Alzheimer's disease (AD), frontotemporal dementia (FTD), and vascular dementia. It is
also seen in other neurodegenerative and psychiatric disorders such as Parkinson's disease (PD),
schizophrenia, stroke, multiple sclerosis, traumatic brain injury, and major depression (Borjse et
al., 2017; Ishii, Weintraub & Mervis, 2016; Selbaek, Engedal & Bergh, 2013). Apathy is defined
as a disorder of motivation or lack of interest characterized by diminished goal directed behavior,
cognitive activity, emotional display, and social interaction (Marin, Bierdrzycki, &
Firinciogullari, 1991; Robert et al., 2018). Thus, individuals with apathy typically have
diminished motivation or interest in goal directed behaviors, such as initiating or participating in
conversations, performing activities of daily living (ADLs), or seeking social activities (Mizrahi
& Starkstein, 2007; Stanton & Carson, 2016). They experience loss of interest in more complex
instrumental activities of daily living (IADLs) such as cooking, shopping, financial management,
traveling, and medication management, and appear to be emotionally unconcerned about
important life affairs (Marin, 1990; Mizrahi & Starkstein, 2007; Stanton & Carson, 2016).
Apathy has been investigated using various criteria and is considered both a symptom
and a syndrome (Harrison, Aerts & Brodaty, 2016). Traditionally, apathy is thought to be a
symptom of a wide range of disorders including neurocognitive, medical, and psychiatric
disorders (Ang, Lockwood, Apps, Muhammed, & Husain, 2017; Robert et al., 2018), but there is
31

evidence to suggest that it affects healthy older adults, and hence it is considered a syndrome
(Brodaty, Altendorf, Withall, & Sachdev, 2010; Marin, 1991; Onyike et al., 2007). The
prevalence of apathy can vary widely based upon the type of scale and population being studied.
In one study, for example, 1.4% of individuals who are cognitively intact, 3.1% of those with a
mild cognitive impairment, and 17.3% of those living with dementia were found to experience
apathy (Onyike et al., 2007). It has also been reported that the prevalence rate of apathy among
people with dementia can be as high as 84% (Zuidema, de Jonghe, Verhey, & Koopmans, 2009),
while ranging between 27-36% among those without dementia (Brodaty et al., 2010). Apathy is
one of the mood disorders shown to lead to rapid cognitive decline and heightened risk for
mortality among older people with dementia (Lavretsky et al., 2015; Nijsten, Leontjevas, Pat-El,
Smalbrugge, Koopmans, & Gerritsen, 2017; van Reekum, Stuss, & Ostrander, 2005).
Apathy has been associated with diverse adverse effects in older adults, especially those
with dementia or other neurogenerative disorders, including poorer interpersonal relationships,
and deteriorating quality of life (Mjorud, Kirkevold, Rosvik, Selbaek, & Engedal, 2014; Palmer
et al., 2010; van Almenkerk, Smalbrugge, Depla, Eefsting, & Hertogh, 2015). Apathy can
negatively impact caregivers (formal and informal), as people affected might be difficult to
engage with and become uncooperative with care and may require more attention and
supervision. This can culminate in increased workload, caregiver burden, and increased
healthcare costs (Nijsten, Smalbrugge, Depla, Eefsting, & Hertogh, 2019; Stanton & Carson,
2016).
Despite the prevalence and negative impacts of apathy on older people, it is often underrecognized and under-managed (Leone, et al., 2013; Mele, Goodarzi, Hanson, & Holroyd-Leduc,
2019). However, when optimally detected, apathy is treatable pharmacologically (Beasley et al.,

32

1997; Blundo & Grace, 2015; Frakey, Salloway, Buelow, & Malloy, 2012; Masanic, Bayley, van
Reekum, & Simard, 2001; Padala et al., 2010; Padala et al., 2020; Rosenberg et al., 2013) and
non-pharmacologically (Goris, Ansel, & Schutte, 2016; Holmes, Knights, Dean, Hodkinson, &
Hopkins, 2006; Theleritis, Siarkos, Katirtzoglou, & Politis, 2017). The purpose of this review is
to describe the various factors that serve as barriers and facilitators to optimal care for people
with apathy in terms of its early identification and management in older adults. A comprehensive
understanding of these factors is essential to developing effective interventions and enhancing
healthcare services for older adults with apathy (Mele, Van, Holroyd-Leduc, Ismail, Pringsheim,
& Goodarzi, 2020). Further, this review aimed to inform practice recommendations for
improvement in the care of people with apathy.
Methods
This review was guided by Whittemore and Knafl (2005) framework for integrative
reviews. An integrated review allows for the integration of various types of methodologies and
the synthesis of their findings including qualitative studies, quantitative studies, case reports as
well as theoretical literature (Whittemore & Knafl, 2005). The framework consists of five
phases, including problem formulation, literature search, data evaluation, data analysis, and data
presentation (Whittemore & Knafl, 2005). The review followed PRISMA (Preferred Reporting
Items for Systematic Reviews and Meta-Analysis) (see Figure 3) which provided an overview of
the selection process and justified the exclusions made in the review (Moher et al., 2015).
Problem formulation
The overarching questions that guided the search were: a) what are the barriers to optimal
detection and intervention for apathy among older adults? and b) what are the facilitators that

33

have been or could be identified for optimal detection and intervention for apathy among older
people?

Figure 3: PRISMA flow chart

34

Literature search
Search Strategy
The search for relevant literature was conducted on March 14th, 2023, by one reviewer
(AA) using five databases including PsychINFO, CINAHL, MEDLINE (OVID), PUBMED, and
PsychArticles databases. The search terms were developed in consultation with the librarian who
has an expertise in systematic searches. Search terms used consist of both keywords and Mesh
terms and included "barrier*" OR "challenge*" OR “problem*” OR “hinder*” OR "motivator*"
OR "driver*" OR "facilitator*" OR "enabler*" AND "older adult" OR "aged" OR "elderly" OR
"geriatric*" OR "senior*” OR "older people" AND "apathy" OR "indifference" OR "lack of
motivation" OR "lack of interest". The selection process was recorded in the flow chart (see
supplementary file). The inclusion and exclusion criteria were also developed with help of a
university health sciences librarian (see Table 1). No additional filters were applied.
Inclusion criteria

Exclusion criteria

1) Addressed apathy in older adults.
2) Focused on assessment, prevention, or
interventions for apathy and barriers
encountered during research or
clinical diagnosis or facilitators to
diagnosing or managing apathy
effectively.
3) Involved participants aged 60 and
above or at least 50% of participants
are 60 years and above.
4) Written in English.
1) Solely focused on other behavioral
symptoms e.g., depression,
aggression, anxiety, or irritability.
2) Aimed at children and adolescents.
3) Unpublished manuscripts.
4) Editorials.

Table 1: Inclusion and Exclusion Criteria

35

Data evaluation
Study selection
Title and abstract screening were performed by two independent reviewers (AA and SF).
A third reviewer (DBL) resolved the conflicts that arose during the screening process. Full text
screening was performed by one reviewer (AA). Any papers directly or indirectly discussing
barriers and/or facilitators encountered during research or assessment or intervention for apathy
in clinical practice were included. Articles were also included if the sample consisted of people
who had apathy aged 60 years and above and written in English language. Analysis of retrieved
reference lists was also performed manually to find relevant articles that might have been missed
during the full text screening. In total, 3,121 citations were retrieved, of which 770 were
duplicates and 34 articles met the inclusion criteria (see Figure 3). The search results from all
databases were directly imported into Endnote Version 20 (Peters, 2017).
Quality assessment
Given that integrative reviews involve gathering of data from multiple sources,
evaluating the overall quality of studies can be complex and papers do not necessarily need to be
excluded based on quality criteria and assessment of data quality can be done based on the
criteria relevant to the review (Whittemore & Knafl, 2005). As this review included qualitative,
quantitative, mixed method and review papers, two quality assessment tools were used including
the Critical Appraisal Skills Programme [CASP] (2018) for systematic reviews and the mixed
method appraisal tools (MMAT) (Pluye, Bengoechea, Granikov, Kaur, & Tang, 2018). Quality
assessment was performed by two reviewers (AA and SF). Overall scores for these tools were
interpreted using a 2-point Likert scale (high and low quality) as suggested by Whittemore and
Knafl (2005). In this case, articles that scored ≤2 on the MMAT tool were rated as low quality

36

while papers with a score ≥3 were considered high quality. With regards to CASP tool, articles
with total score of ≤6 were considered low quality while papers with ≥7 were rated as high
quality. Most studies that met the inclusion criteria were rated as high quality (see supplementary
table 1). In addition, given the heterogeneity of the selected studies’ methodologies, metaanalysis was not conducted.
Data analysis
The ordering, coding, categorizing, and summarizing of data was performed using NVivo
12 software (QSR International, 2018) and Microsoft Excel software was used for organization.
Identified barriers and facilitators were further reviewed, organized into themes, and conclusion
drawn (Braun & Clarke, 2006). In addition, data pertaining to the study location, participants,
and research design were extracted where applicable (see Supplementary Table 2).
Data presentation
Study characteristics
Out of 3,121 articles that were retrieved, 34 studies met the inclusion criteria for this
review (see Supplementary Table 2). The studies came from three continents including Europe,
Australasia, and North America. Most studies were reviews (n=22), eight were quantitative
studies, two employed mixed method and the remaining two were qualitative studies. Included
studies were published between 2007 and 2023. The focus of most of the studies was on
assessment and intervention for apathy. Only one study directly addressed barriers and
facilitators to diagnosing and managing apathy. In studies that employed qualitative or
quantitative methodologies or both, sample size ranged from 30 to 665 and included people with
different types of diseases including dementia of all types, Parkinson’s disease, stroke, medical
and psychiatric disorders. Some of the studies also include caregivers and healthcare

37

practitioners including doctors, nurses, and allied health professionals such as technical staff,
certified nursing assistant and activity staff.

38

Figure 4: Diagrammatic representation of key recommendations for optimal care for older people with apathy

39

Results
Barriers to Optimal Detection and Interventions for Apathy
The barriers to optimal detection and intervention for apathy were grouped into four
main themes: lack of standardized definition of apathy; lack of awareness; overlap with other
disorders; and methodological limitations of clinical trials (see Figure 4).
Lack of standardized definition of apathy
Lack of standardized definition of apathy were cited in most studies (Burgon, Goldberg,
van der Wardt, Brewin, and Harwood, 2021; Caeiro, Ferro, & Costa, 2013; Chase, 2011; Clarke
et al., 2011; Cummings et al., 2015; Drye et al., 2013; Hermann et al., 2008; Leone et al., 2013;
Mele, Goodarzi, Hanson, & Holroyd-Leduc, 2019; Matmati et al., 2022; Mele, Van, HolroydLeduc, Ismail, Pringsheim, & Goodarzi, 2020; Stanton & Carson, 2016). Despite the increasing
effort to establish a commonly accepted diagnostic criteria for apathy (DCA), disagreement
continues to exist over its precise definition and description (Drye et al., 2013, Lanctot et al.
2021).
In different fields, the words and meanings associated with apathy can vary and become
isolated within specific areas of expertise (Thant & Yager, 2019). There is no category for
apathy in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-V), and the likelihood of its inclusion in the next edition of the DSM is the subject of
much debate (Matmati et al., 2022; Miller et al., 2021; Tay et al., 2021). Apathy is not listed in
the International Classification of Diseases 10th Revision (ICD-10) (Drye et al., 2013; Stanton &
Carson, 2016). The lack of standardized definition and conceptualization of apathy can cause
ambiguity over what to measure and the appropriate scale to develop or use when measuring
apathy in older adults. Consequently, apathy can easily be overlooked or some of its dimensions
40

being missed during assessment (Clarke et al., 2011; Matmati et al., 2022). For example,
participants in a qualitative study investigating the barriers and facilitators to diagnosing and
managing apathy in persons living with Parkinson’s disease reported that they have never
received or offered a formal diagnosis of apathy. In addition, the lack of unified definition of
apathy can lead to inaccurate interpretation of data in terms of over-reporting or under-reporting
of apathy (Mele, Goodarzi, Hanson, and Holroyd-Leduc, 2019). Caeiro, Ferro, and Costa
(2013), for example, noted that the wide range of prevalent rates of apathy (15.2-71.1 %)
reported in their study was likely due to the absence of a clear definition and clinical criteria for
apathy assessment. Similarly, Flavell & Nestor (2022) found a wide range in the prevalent rate of
apathy in their study due to the variability in the assessment tools used to measure apathy. In a
recent study by Dickson et al. (2022), it was observed that despite the evidence for the social
domain of apathy, most scales that have been used over the past three decades only focus on the
cognitive, behavior and emotion domains of apathy implying that the social domain of apathy
has been neglected over the years. Lactot et al. (2021) also observed that although there is a
strong overlap between the Dementia Apathy Interview Rating (DAIR) scale (a rating scale for
assessment of apathy in dementia) and DCA, some participants who scored high in DAIR were
not considered apathetic by the DCA. The explanation was that the DCA does not include
emotional domain of apathy while the DAIR does. The implication is that apathy in dementia can
easily be missed when using the DCA.
Lack of Awareness
Lack of awareness of apathy as an independent disorder or a symptom that manifests in
other brain disorders is a major barrier to the optimal detection and intervention for apathy (Drye
et al., 2013; Jao, Liu, Williams, Chaudhury, & Parajuli, 2019; Leone et al., 2013; Mele et al.,

41

2019). The lack of awareness is not limited to informal caregiver, but also healthcare
practitioners and persons with apathy themselves (Jao et al., 2019). For example, Mele et al.
(2019) identified that healthcare practitioners seldom offer a diagnosis of apathy because they do
not recognize it as a distinct disorder and likewise, participants with apathy did not seek for a
formal diagnosis of apathy or seek for treatment because they lacked insight and often perceive
their symptoms of apathy as part of the natural ageing process. Lack of awareness by informal
caregivers can lead to apathy being misinterpreted as laziness or oppositional behavior
(persistent patterns of hostility, and negativity) or part of aging process or response to other
illnesses (Drye et al., 2013; Stanton & Carson, 2016), and consequently, they might find it
difficult to detect or seek for interventions for their relatives with apathy.
Overlap with Other Disorders
The presence of neurodegenerative disorders (e.g., dementia and Parkinson’s disease) and
psychiatric symptoms such as depression or anhedonia or cognitive impairment can serve as an
impediment to the optimal detection and provision of appropriate treatment for apathy as these
symptoms mimics the symptoms of apathy (Cummings et al., 2015; Drye et al., 2013; Jao et al.,
2019; Mele et al., 2019). This was expressed by Cummings et al. (2015) who commented that the
overlap of apathy with other neuropsychiatric disorders such as Alzheimer’s dementia and
Parkinson’s disease was a significant confounder in their study and had limited the clinical
benefits of the result of their findings. Drye et al. (2013) discovered that due to overlap of apathy
with depression, excluding participants who are on antidepressants hindered recruitment and
limited the generalizability of their results. This barrier was also highlighted in Mele et al. (2019)
study where healthcare practitioners stated that due to the overlap of apathy with Parkinson’s
disease, they were unable to detect or provide appropriate treatment for their patients who
presented with apathy symptoms. In addition, overlap of apathy with depression in
42

neurodegenerative disorders such as dementia, Huntington's disease (HD), and Parkinson’s
disease can lead to apathy being misconstrued as depression and subsequently, anti-depressant
being used to treat apathy. However, research has shown that anti-depressants lead to worsening
of apathy (i.e., selective serotonin reuptake inhibitors [SSRI]-induced apathy syndrome) (Padala
et al., 2020).
Methodological limitations of clinical trials
Methodological problems were reported frequently, with some authors noting lower than
expected recruitment rate in randomized controlled studies (Cummings et al., 2015; Drye et al.,
2013; Goris, Ansel & Schutte, 2016; Harrison, Aerts & Brodarty, 2016; Manera et al., 2020;
Starkstein et al., 2016; Tay, Morris & Marcus, 2021; Theletiris et al., 2018). Low response rates
resulted from participants’ refusal to participate in research and unavailability of suitable
informants (Drye et al., 2013; Jao et al., 2019; Padala et al., 2010; Padala et al., 2018; Starkstein
et al., 2016); difficulty in randomizing or determining the suitable method to blinding
participants to treatments (Drye et al., 2013; Clarke et al., 2007; Leone et al., 2013); use of
variable scales to and difficulty in determining appropriate test treatment (Drye et al., 2013;
Saredakis et al., 2020; Roth et al., 2007). For example, in a recent randomized controlled trial
conducted by Padala et al. (2018) which included a sample size of 60 male participants
(treatment group=30; placebo group = 30) to compare the effects of Methylphenidate (a drug
commonly used in the treatment for apathy) with placebo, it was concluded that although, the
treatment effect of Methylphenidate on apathy was statistically significant (p <0.001), the small
sample limited the clinical relevance and generalizability of the findings. Burgon et al. (2021)
concluded that the lack of systematic approach and transparency when developing apathy scales
made it difficult to draw valid conclusions about the content validity, reliability, and internal

43

consistency of most of the scales used to measure apathy during clinical trials. Some authors
have also alluded to the fact that methodological limitations of clinical trials have hampered the
approval of licensed medications for the treatment of apathy in clinical settings (Chase, 2011;
Steffen et al., 2022).
Facilitators for Optimal Detection and Interventions for Apathy
The facilitators for optimal detection and intervention for apathy were grouped into three
themes: involvement of the dyad; education, training, and experience; and adoption of
new/innovative method of screening and intervention (see Figure 2).
Involvement of the dyad
Involving the persons who have apathy and informal/formal caregivers (dyad) in the
assessment of apathy both clinically and in research is key to optimal detection and intervention
for apathy (Clarke et al., 2007; Drye et al., 2013; Jao et al., 2019; Mele et al., 2019; Mele et al.,
2020) because of the discrepancies that may occur between raters. For example, physicians’
ratings of the clinician version of the AES were found to be less accurate when compared to the
informant version (AES-I) (Clarke et al., 2007). In that study, it was noted that physicians’
training and experiences with the use of apathy scale may have affected the reliability of apathy
measurement, and it was recommended that raters of apathy should know the person well or
spend sufficient time to observe the person’s behaviors prior to assessment. Similarly, Jao et al.
(2019) examined the relationships among AES ratings for three raters including families,
certified nursing assistants (CNAs) or activity staff, and licensed practical nurses (LPNs). They
found that families performed better at apathy ratings than LPNs and CNAs or activity staff.
They also noted that family members are knowledgeable about the individual’s past behaviors
and as a result, were able to accurately detect deviation in behavior. Jao et al. (2019) further

44

recommended that family’s input should be sought during assessment of apathy as those affected
may not be able to understand or answer some of the questions asked.
Education, training, and experience
Accurate assessment of apathy in clinical settings is dependent on the level of education,
training, and experience of the raters (Carrozzino, 2019; Clarke et al., 2007; Drye et al., 2013;
Jao et al., 2019). Clarke et al. (2007) alluded to the fact that raters of apathy should obtain a
minimum bachelor’s degree in health-related field to accurately assess apathy. Jao et al. (2019)
argued that registered nurses (RN) are better positioned to assess apathy in long term care
facilities than other healthcare staff, including LPNs, CNAs or activity staff, because of their
educational attainment (typically four years of formal education) and experiences with clinical
assessments. Admittedly, Carrozzino (2019) stated that some researchers who don't have clinical
experience tried to increase the value of the alpha coefficient of rating scales by adding as many
questions as possible to their rating scales. Unfortunately, this resulted in rating scales with
similar or unnecessary questions that do not provide any new clinical information (Carrozzino,
2019). Carrozzino (2019) recommended that clinicians with experience are needed to establish
the clinical validity of apathy assessment tools. Furthermore, Clarke et al. (2007) recommended
that for healthcare practitioners to accurately assess apathy, they need to have at least a year of
experience working with people who have apathy and a minimum of six hours of experience in
apathy assessment.
The need to increase awareness through education to overcome the barrier to the optimal
intervention for apathy was highlighted by a few studies (Drye et al., 2013; Mele et al., 2019;
Leone et al., 2013). As reported by Drye et al. (2013), educating the local community about
apathy helped to overcome the barrier to participant’s recruitment for their study. Likewise, the

45

focus group study by Mele et al. (2019) corroborated these findings, noting that educating
healthcare practitioners about apathy as a symptom distinct from other neurodegenerative
disorder, such as Parkinson’s disease, may help to increase awareness. Leone et al. (2013)
observed that educating long term care staff was effective at raising awareness about apathy and
led to a change in staffs’ perception that apathy is the least behavioral problem among the other
neuropsychiatric symptoms resulting in implementation of evidence-based strategies to mitigate
apathy.
Adoption of new and innovative method of screening and intervention
Over the past few years, researchers have come up with different ways to measure
apathy. However, these methods are not very useful at detecting apathy optimally because they
rely on human observation (Konig et al., 2014). To facilitate more objective measures of apathy,
the use of information and communication technologies (ICT) was alluded to by some authors
(Konig et al. 2014; Lanctot et al., 2017; Manera et al. 2021). For example, in a narrative review
of ICT tools for apathy assessment, Konig et al. (2014) commented that those technologies such
as ambulatory actigraphy (a small device containing a piezoelectric accelerometer which tracks
motor activity), automatic facial emotion recognition or electrodermal conduction could be better
at detecting apathy than the conventional apathy scales including the AES and NPI. In terms of
intervention for apathy, technology such as repetitive transcranial magnetic stimulation (rTMS)
has been proposed (Lanctot et al., 2017; Tay et al., 2021).
Discussion
Provision of appropriate care in terms of assessment and management of apathy in older
people, especially people with comorbidities, such as dementia, stroke, schizophrenia, and
Parkinson’s disease, can be challenging (Clarke et al., 2007). A clear understanding of the factors

46

that inhibit or facilitate the optimal detection and intervention for apathy is necessary to prevent
its negative consequences. As noted by many authors in this review, apathy has only been listed
as a symptom in various disorders, including neurological, psychiatric, and medical disorders.
The fourth and fifth Diagnostic and Statistical Manual of Mental Disorders (DSM-IV and DSMV) have not provided a formal definition nor a universally agreed diagnostic criteria for detection
and management of apathy in clinical settings (Clarke et al., 2011; Thant & Yager, 2019). It is
also not listed as a disease in The International Classification of Diseases 10th Revision (ICD10) (Drye et al., 2013; Stanton & Carson, 2016). The fact that apathy has not been widely
accepted as a clinical condition that requires treatment has likely played a role in why there are
varying terms and concepts used to describe it across different fields of study. For instance, in
psychiatry, the terms “apathy” and “abulia" are commonly used to describe apathy (Thant &
Yager, 2019, p.707). Meanwhile, in psychotic disorders, the terms "negative symptoms" and
"avolition" are preferred (Thant & Yager, 2019, p.707). In cannabis and other substance use,
personality, depressive, and psychotic disorders, the term "amotivation" is often used (Thant &
Yager, 2019, p.707).
In ADHD and some learning disorders, the term "boredom" is more commonly used
(Teixeira et al., 2021; Thant & Yager, 2019, p. 707). In the absence of formalized definition and
conceptual operationalization of apathy, there continues to be lack of consensus on essential
items to include in apathy scales for clinical diagnosis and research studies. Healthcare
professionals may continue to face uncertainty over the right type of diagnostic tool to use when
measuring apathy (Clarke et al., 2011). Inappropriate selection of apathy measurement scales can
lead to inaccurate interpretation of research findings and clinical data and subsequently, flawed
conclusions. To mitigate this inaccuracy, Harrison, Aerts and Brodarty, (2016) suggested that a

47

more rigorous approach is needed in evaluating apathy treatments. This includes better
documentation of the study population, baseline apathy diagnosis and severity, and the
consideration of confounding factors. Additionally, there should be a focus on both clinically and
statistically significant effect sizes, utilization of apathy-specific measurement scales, caregiver
input, and an adequate study duration to assess the sustainability of treatment effects and detect
meaningful improvements (Harrison, Aerts & Brodarty, 2016).
Furthermore, uncertainty over the best tool to select can lead to the abandonment of the
existing apathy assessment scales by healthcare practitioners and increase their reliance on selfreport or proxy account of apathy (Mele, Goodarzi, Hanson, & Holroyd-Leduc, 2019). Relying
solely on family or proxy accounts or self-report of apathy may lead to inconsistent information
and impose limits on the treatment provided to people who have apathy (Cummings et al., 2015;
Jao, Liu, Williams, Chaudhury & Parajuli, 2019; Mele, Goodarzi, Hanson, & Holroyd-Leduc,
2019). This reinforces the need to develop international consensus on the definition and
conceptual operationalization of apathy.
It is well established that apathy plays a critical role in the aspect of maintenance of
ADLs, IADL, and quality of life (QoL) (Tierney, Woods, Weinborn, & Bucks, 2018) as older
adults with apathy are more likely to have difficulties in carrying out ADL and experience lower
QoL than those without even in the absence of mild cognitive impairment or dementia (Tierney
et al., 2018). The relationship between apathy and ADLs and QoL was independent of
depression. This highlights the need for inclusion of cognitively well older people without
depression in research investigating apathy and provision of apathy assessment among older
adults experiencing ADL decline.

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Although this review identified education and training of healthcare staff as important
elements in the optimal detection and intervention for apathy, chances are that apathy will be
overlooked by healthcare staff after being trained. This may be due to what Villar, Chacur,
Celdrán, and Serrat (2021) referred to as “common practices” (p. 614). Common practices are
how staff are managing apathy in their day-to-day practices as opposed to best practices (how
they think apathy should be managed) (Villar et al., 2021). Common practices are behaviorfocused or no intervention strategies where care staff provide any kind of activity to stimulate
people with apathy without considering their needs and personal preferences or ignore the
situation and do nothing while best practices are person centered strategies. In their crosssectional study involving technical staff (nurses, physiotherapists, psychologists, and
occupational therapists) and care assistants, Villar et al. (2021) found that even though most
health care workers recognize that person-centered care strategies are the best ways to manage
apathy, they continue to implement common practices for addressing apathy. This will highlight
the importance of considering the staff’s previous experiences and common practices when
designing training programs (Villar et al., 2021). In other words, reflection-based training should
be implemented.
Given the overlap of apathy with other neuropsychiatric and neurodegenerative disorders,
the differentiation of apathy from these disorders is essential for a comprehensive and accurate
evaluation of apathy. To achieve this, a multidimensional assessment approach has been
proposed (Konig et al., 2014). This approach involves utilization of a combination of traditional
applied neuropsychological assessment, extensive interviews with family or caregivers, clinical
observations, and detailed medical history analysis (Konig et al., 2014). This approach should be

49

complemented using ICT to identify apathy components and relevant associations (Konig et al.,
2014, Manera et al., 2021).
Limitations of the study
A limitation of the current literature review is that included studies tended to use focused
homogenous samples that consisted of participants who had experienced with a specific health
condition such dementia, stroke, and Parkinson’s disease. Therefore, the results described in this
review may not be generalizable to the healthy older adult, underscoring the importance of
including larger and more diverse sample populations. A further limitation includes the gap of
in-depth understanding garnered from use of qualitative methodology. Of note, only one
qualitative study directly addressed this topic. Some of the findings reported were extracted from
either the discussion or limitation sections of the included studies. As a result, the barriers, and
facilitators discussed may not be exhaustive.
Clinical Implications
From a clinical perspective, the findings of this study highlight the absence of a unified
definition and conceptual operationalization of apathy, both of which should be incorporated into
subsequent updates to the Diagnostic and Statistical Manual of Mental Disorders. Specific
training/education on apathy assessment should be provided for healthcare staff working with
older people including LPNs, CNAs and activity staff on how to accurately detect and manage
apathy. For the training to be effective, resources should be standardized and accessible by
adopting online format or a blend of online and offline method (Saredakis et al., 2020).
Education should also be made freely available for informal caregivers and older adults on how
to recognize symptoms of apathy. Since apathy is often associated with depression and dementia,
older adults presenting these symptoms should be routinely assessed for apathy. In addition,
50

older adults with decline in functional abilities should be offered assessment for apathy. When
assessing apathy in older adults and people with dementia, apathy specific scales such as the
AES and LARS, should be considered given that these scales have sufficient reliability, content
validity and internal consistency (Burgon et al., 2021). It is worthy of note that medication
interventions for apathy should be tailored to the type of disorders associated with apathy as
treatment options which are effective in one disorder may not be effective in another disorder
(Azhar et al., 2022).
Implications for research
Future research exploring apathy should focus on the efficacy of both pharmacological
and non-pharmacological interventions for apathy using a rigorous clinical trial approach
(Ferrero-Arias et al., 2011). More qualitative research is needed to increase understanding about
individuals’ lived experiences of apathy. This may broaden understanding of apathy and help
inform consensus on how apathy should be conceptualized and defined (Mele et al., 2019). In
addition, longitudinal studies should be considered by future researchers to better understand the
pattern of changes in individuals with apathy. This might help in drawing valid conclusions
about effective care, preventative interventions, and treatment approaches for those experiencing
apathy. In addition, the efficacy of ICT for apathy assessment needs to be further investigated
and validated with larger population sizes and stronger methodologies (Konig et al., 2014). An
automatized fusion of sensor measurements should be developed to capture all sub symptoms of
apathy and provide immediate visual feedback to clinicians, caregivers, and patients (Konig et
al., 2014). The integration of early intervention strategies, such as serious games or robotics,
with ICT detection of apathy symptoms could further advance the field (Konig et al., 2014).

51

Recommendations
Based on the findings of this review, the following key recommendations are made to
improve the optimal care provision for people with apathy:
•

Establish international research and clinical standard on definition and scales for
screening, assessment, and diagnosis of apathy.

•

Develop a guideline on the prevention, assessment, and treatment of apathy among older
adults.

•

Carry out a public health program to improve awareness of apathy at a community health
level targeting the public and general practice.

•

Adopt multidisciplinary approach in the assessment and management of apathy.

•

Improve quality of studies, and the range of study methodologies which are accepted as
clinically valid (RCTs are not the only reliable option).

•

Review the content on apathy in universities offering nursing and medical education
subjects to ensure it is up to standard, and if up to standard, utilise it to plan education
programs for other stakeholders.

Conclusion
Without a gold standard and universally accepted definition of apathy, its assessment and
management remain complex and challenging. The findings of this review suggest that optimal
detection and treatment can occur with increased effort at arriving at a consensus in the
conceptualization of apathy and recognizing it as both a symptom and a syndrome. Interventions
aimed at mitigating apathy for older people should specifically consider addressing these barriers
by increasing awareness of the signs and symptoms of apathy as well as enhancing availability

52

and accessibility to educational resources and technologies to support more accurate detection of
apathy by healthcare providers.

53

Chapter Five: Investigating the prevalence and predictors of apathy among the Canadian
long-term care residents: A secondary data analysis
This chapter addressed RQ 2 “What is the prevalence and predictors for apathy among
the Canadian LTCF residents?” and has been published in the Canadian Journal of Nursing as:
Agboji, A., Freeman, S., Banner, D., Armstrong, J., & Martin-Khan, M. (2024). Investigating the
Prevalence and Predictors of Apathy among the Canadian Long-Term Care Residents: A
Secondary Data Analysis. The Canadian Journal of Nursing Research = Revue Canadienne De
Recherche en Sciences Infirmieres, 56(4), 468–482. https://doi.org/10.1177/08445621241276613
Abstract
Background: In LTCF, apathy is a prevalent issue, leading to cognitive decline,
functional impairment, and increased mortality risk. Despite its significance, apathy often
remains underrecognized and undermanaged in these settings. Recognizing and addressing the
predictors of apathy is critical for early intervention and improved care outcomes.
Purpose: This study aims to assess the prevalence of apathy and identify its associated
risk factors among newly admitted residents in the Canadian LTCF, using the InterRAI
Minimum Data Set (MDS 2.0).
Methods: We conducted a cross-sectional analysis of MDS 2.0 admission assessment
data between 2015 and 2019, covering 157,596 residents across six Canadian provinces and one
territory. Apathy was measured using the Apathy Index of the MDS 2.0, with the
biopsychosocial model guiding the analysis.

54

Results: The prevalence of apathy was 12.5% (19,758 individuals). The most significant
predictors include cognitive impairments, specific age groups, hearing impairments, vision
impairments, facility size and location.
Conclusions: The findings of this study underscore the need for tailored strategies in
LTCF to address apathy, considering individual, institutional, and regional variations. Emphasis
on environmental and personal factors is crucial in the management and prevention of apathy in
these settings.
Background & Purpose
In Canada, as in many developed countries, LTCF are vital for supporting individuals
with complex health needs that exceed the scope of community-based care (Freeman et al.,
2017). LTCF, also known as nursing homes or personal care homes, cater to those who require
specialized care due to chronic physical, mental, or other disabilities, which is not typically
available through home care or retirement services (Canadian Institute for Health Information
[CIHI], 2013). The significance of LTCF in the healthcare system has been growing; in 2013,
there were 2,036 LTCF across Canada, with a projection that by 2041, the number of residents
requiring these facilities will increase to 320,000. However, by 2020, the number of residents in
these facilities had reached 474,000, surpassing the forecasted needs (Statistics Canada, 2022).
Apathy is a complex and multidimensional construct (Marin, 1990; Marin & Wilkosz,
2005; Robert et al., 2018), that is increasingly observed among those in LTCF (Gerritsen et al.,
2005; Jao et al., 2018; Roth et al., 2007; Tang et al., 2018). Cognitively, it manifests as
diminished intellectual engagement such as a lack of curiosity or motivation to pursue
knowledge or engage in problem-solving activities (Le Heron et al., 2018, Robert et al., 2002).
Behaviorally, it is characterized by a reduction in goal-directed actions including a decrease in
55

initiated activities, a decline in participation in previously enjoyed activities, or a lack of
response to motivational cues (Marin, 1991). Emotionally, apathy leads to a blunted affective
response or emotional indifference (Starkstein & Leentjens 2008). Socially, it precipitates a
withdrawal from social interactions and activities (Sockeel et al., 2006). Thus, individuals with
apathy may manifest one or more symptoms depending on the domains implicated (Marin 1990;
Levy & Dubois, 2006; Robert et al., 2018). It is noteworthy that various terms are used to
describe apathy in clinical settings, including abulia, negative symptoms, avolition, amotivation,
anhedonia and boredom (Thant & Yager, 2019). However, these terms are distinguishable from
apathy (Barch et al., 2016). For example, anhedonia is characterized by a diminished capacity to
enjoy activities that are usually pleasurable, often appearing as a symptom of depression (Ang et
al., 2018; Serreti, 2023). Apathy, in contrast, is marked by a broad disinterest or lack of
motivation, without necessarily affecting emotional responses related to pleasure (Fahed &
Steffens, 2021).
The prevalence of apathy among LTCF populations has been variably reported in
literature, with estimates ranging significantly due to differences in assessment methods and
population. For instance, using the Neuropsychiatric Inventory-Nursing Home Version (NPINH) to measure apathy, a study involving LTCF residents with Alzheimer’s disease (AD) and
other dementias observed that 84.1% of residents had apathy (Wood et al., 2000). An
observational study which utilized the NH-version of the Apathy Evaluation Scale (AES10) to
assess apathy in a sample of LTCF residents with stroke demonstrated that apathy was found in
28% of the individual within this population (van Almenkerk et al., 2015). A comprehensive
review found that the frequency of apathy was 69% among 162 residents admitted to LTCF

56

(Starkstein et al. 2006). In other systematic reviews and meta-analytic studies, it has been
reported that 50% of the residents in LTCF have apathy (Leung et al., 2021; Zhao et al., 2017).
Research has consistently shown that apathy contributes to a range of adverse outcomes
among LTCF residents, including accelerated cognitive decline, increased dependency in daily
activities, and a higher risk of mortality (Aguera-Ortiz et al., 2015; Ayers et al., 2017; Lavretsky
et al., 2010; Nijsten et al., 2017; van Reekum et al., 2005). These outcomes not only affect the
individuals but also pose challenges for caregivers (formal and informal) and the healthcare
system (Jao et al., 2019; Wong et al. 2020). The burden of apathy on caregivers is particularly
noteworthy, as it often leads to increased caregiver stress and burnout (Wong et al. 2020). The
Canadian healthcare system, with its diverse population and unique healthcare policies (Martin et
al., 2018), provides a distinct context for examining apathy.
Despite the significance of apathy among LTCF residents, it is rarely diagnosed or
specifically addressed (Nijsten et al., 2023). This oversight can be attributed to several factors.
Firstly, there is a lack of standardized, validated tools for apathy assessment and diagnosis
among the LTCF population (Agboji et al., 2024; Clarke et al., 2011; Volicer et al., 2013; Miller
et al., 2021; Tay et al., 2021). Secondly, symptoms of apathy are often mistakenly attributed to
other neuropsychiatric conditions like depression, leading to misdiagnosis and inappropriate
management (Jao et al., 2019; Leone et al., 2013). Thirdly, prior research has primarily focused
on apathy as a secondary symptom of neurodegenerative diseases including Alzheimer's and
Parkinson's (Manera et al., 2020; Roberts et al., 2009; Robert et al., 2018; Jao et al., 2019).
However, recent studies suggest that apathy can exist independently (Khan & Watson, 2018;
Lopez et al., 2022).

57

Existing literature suggests that predictors of apathy in the LTCF included a range of
demographic, psychological, and social factors (Ang et al., 2018; Cummings et al., 2015; Drye et
al., 2013; Robert et al., 2018; Yuen et al., 2014). Variables such as age, cognitive impairment,
depression, and physical health status have been implicated, but findings are not consistent
across studies (Roberts & Reed, 2019; Singh et al., 2021). For example, in a study by Starkstein
et al. (2009), it was found that older age was a risk factor for apathy, whereas, in other studies, it
was reported that younger age (age below 65 years) was a predictor of apathy (Appenholf et al.,
2019; Jao et al., 2018). By contrast, Holtta et al. (2012) found no differences in age among those
who have apathy. With regards to sex, some studies showed that being male was a risk factor
(Jao et al., 2020; Vilalta-Franch et al., 2013), while other studies found no relationship between
sex and apathy (Clarke et al., 2008; Proitsi et al., 2011; Starkstein et al.,2006). These
inconsistencies underscore the need for more targeted research using standardized measures.
To date, a comprehensive study examining the factors that may increase the risks of
apathy in the LTCF context is sparse. The purpose of this current study was to examine the
prevalence and predictors of apathy among persons living in the Canadian LTCF using the
Apathy Index of the MDS 2.0, a standardized tool approved for use in LTCF across Canada.
Methods and Procedures
Study Design
This retrospective cross-sectional study analyzed de-identified data from residents in
LTCF, using the MDS 2.0 from the Continuing Care Reporting System (CCRS) database of the
Canadian Institute for Health Information (CIHI).

58

Setting and Sample
We included residents from the Canadian LTCF across six provinces (Alberta, British
Columbia, Manitoba, Newfoundland and Labrador, Ontario, and Saskatchewan) and one territory
(Yukon) who participated in the admission assessments between 2015 and 2019. Exclusions
were residents in comatose states or with missing relevant information.
Data collection
As aforementioned, the MDS 2.0 is a mandated assessment tool used in most Canadian
LTCF. It provides comprehensive personal-level information about residents that clinicians may
use to inform their decision-making when developing a care plan that reflects the individual’s
needs, preferences, and strengths (Hirdes et al., 2008). The assessments were completed by
trained healthcare staff within 14 days of admission (admission assessment) and quarterly
thereafter, involving multiple information sources, including observations and consultations with
various healthcare professionals (Hirdes et al., 2008). Built into the MDS 2.0 are the clinical
assessment protocols (CAPs), also referred to as outcome scales. The CAPs are used to identify
residents who can improve with appropriate care or are at risk of adverse outcomes (Hirdes et al.,
2008).
This study incorporated several key scales including Cognitive Performance Scale (CPS),
which monitors changes in cognitive status (Hirdes et al., 2008); Activity of Daily Living SelfPerformance Hierarchy Scale (ADL-hierarchy), offering insight into the progression of residents'
disabilities through ADL performance analysis (Hirdes et al., 2008); the Pressure Ulcer Risk
Scale (PURS), aimed at identifying the risk of developing pressure ulcers (Poss et al., 2008);
Change in Health, End-Stage Disease, and Signs and Symptoms Scale (CHESS), which
evaluates the resident's health instability and aids in predicting mortality (Morris et al., 2012);

59

the Index of Social Engagement (ISE) measures residents’ sense of initiatives and social
involvement, and consists of six items, including at ease interacting with others, doing planned
or structured activities, doing self-initiated activities; establishes own goals; pursues involvement
in the facility’s life, and accepting invitations into most groups’ activities (Morris et al., 1999);
and the Depression Rating Scale (DRS) measuring mood and behavior (Burrows et al., 2005).
Apathy measures
Apathy was measured using two items, termed the Apathy Index of the MDS 2.0,
assessing withdrawal from activities and reduced social interactions in line with the framework
for apathy assessment proposed by Volicer et al. (2013). These two items were rated on a 3-point
Likert scale by the CCRS as follows: 0 = Indicator not exhibited in last 30 days; 1 = Indicator of
this type exhibited up to 5 days a week; 2 = Indicator of this type exhibited daily or almost daily
(6, 7 days a week). We converted these two items into a dichotomous variable. Thus, a score of 0
indicates non-apathetic and 1 is apathetic. Studies have reported a Cronbach’s Alpha coefficient
of 0.75-0.89 for this measure indicating a high level of internal consistency (Gerritsen et al.,
2008; Stone et al., 2006; Volicer et al., 2013). Additionally, these two items are core symptoms
of apathy included in the screening questions of the Neuropsychiatric Inventory (NPI) and have
demonstrated a high degree of internal consistency (Cummings et al., 1994). High internal
consistency indicates that the items on the apathy index are measuring the same underlying
concept of apathy consistently across different assessments.
Data analysis
Data analysis was conducted using SAS version 9.4. (SAS Institute, Cary, NC, USA,
2013). Descriptive statistics described participant characteristics, and simple logistic regression

60

identified apathy predictors. Prevalence was defined as the percentage of LTCF residents with an
apathy score of 1. Statistical significance was set at an alpha level of p <.05.
Theoretical Framework
Considering the interplay of biological, psychological, and social influences on apathy,
the biopsychosocial model served as the theoretical foundation for this study (Bolton & Gillett,
2019; Ghaemi, 2009). Variables were classified accordingly: biological (age, sex, weight, and
sensory impairment), psychological (cognitive performance scores), and social (marital status,
language, facility size, and facility province) factors.
Results
Sample characteristics
Table 2 presents the sociodemographic characteristics of the study participants. Of the
157,596 residents included in the sample, over half of the population were female (63.5%),
51.1% were aged 85 years or older, 66.6% did not have a partner or spouse (never married,
widowed, divorced, or separated), 16% lived alone before admission, 84.9% were English
speakers, over two-thirds lived in large LTCF (over 100 beds-Morris et al., 2012) (69.9%), and
approximately one quarter entered the facilities from inpatient acute care services (27.9%).
Figure 1 shows the diagnosis of the disease in the study population. Over half of the population
(62.1%) was diagnosed with dementia. Hypertension was also prevalent, affecting 61% of the
population. A small percentage of residents were diagnosed with amyotrophic lateral sclerosis
(0.2%), multiple sclerosis (1.1%), Parkinson’s disease (6.6%), manic depressive disorder (1.8%),
schizophrenia (2.2%), and traumatic brain injury (1.3%). Additionally, less than a quarter of the
population had anxiety disorder (11.5%) and depression (24.1%).

61

Variables
Age at admission (years)
Less than 65
65-74
75-84
85 and above
Sex
Female
Male
Other
Marital status
Married
Never married/widowed/
separated/divorced
Not specified
Lived alone before entry to
LTCF
No
Yes

Total Population
100% (N=157,596)

Apathetic
12.5% (n=19,758)

Non-apathetic
87.6%
(n=137,838)

6.04 (9,519)
11.95 (18,840)
30.95 (48,782)
51.05 (80,455)

14.22 (1,354)
13.90 (2,619)
12.73 (6,209)
11.90 (9,576)

85.78 (8,165)
86.10 (16,221)
87.27 (42,573)
88.10 (70,879)

63.46 (100, 009)
36.46 (57,452)
0.09 (135)

12.05 (12,052)
13.39 (7,690)
11.85 (16)

87.95 (87,957)
86.61 (49,762)
88.15 (119)

29.87 (40,598)
66.61 (90,530)

11.87 (4,818)
11.70 (10,590)

88.13 (35,780)
88.30 (79,940)

3.51 (4,774)

13.57 (648)

86.43 (4,126)

84 (124,118)
16 (23,648)

12.34 (15,322)
12.50 (2,957)

87.66 (108,796)
87.50 (20,691)

84.85 (133,718)
2.23 (3,509)
12.92 (20,369)

13.06 (17,462)
11.97 (420)
9.21 (1,876)

86.94 (116,256)
88.03 (3,089)
90.79 (18,493)

69.78 (109,965)
28.00 (44,134)
2.22 (3,497)

11.38 (12,513)
14.87 (6,561)
19.56 (684)

88.62 (97,452)
85.13 (37,573)
80.44 (2,813)

0.63 (991)
27.94 (44,031)

13.22 (131)
14.96 (6,586)

86.78 (860)
85.04 (37,445)

1.55 (2,450)

11.67 (286)

88.33 (2,164)

6.19 (9,758)

13.12 (1,280)

86.88 (8,478)

15.11 (23,808)
1.15 (1,818)

14.54 (3,461)
20.96 (381)

85.46 (20,346)
79.04 (1,437)

0.84 (1,323)
0.37 (589)

13.38 (177)
12.05 (71)

86.62 (1,146)
87.95 (518)

9.78 (15,415)

11.14 (1,717)

88.86 (13,698)

Language
English
French
Other
Facility size
Large (100+ beds)
Medium (30-99 beds)
Small (1-29 beds)
Entry Service Type
Ambulatory health Service
Inpatient Acute Care
Service
Inpatient Rehabilitation
Service
Inpatient Continuing Care
Service
Residential Care Service
Inpatient Psychiatric
Service
Other/Unclassified service
Inpatient Rehabilitation
Service-Specialized
Home Care Service

62

Residential Care Serviceboard and care
Private Home-no home
care
Cognitive Performance
Scale (CPS)
Intact (score = 0)
Borderline Intact (score =
1)
Mild impairment (score =
2)
Moderate impairment
(score = 3)
Moderate severe
impairment (score = 4)
Severe impairment (score
= 5)
Very severe impairment
(score = 6)
Activity of daily living self
performance hierarchy
scale (ADL-hierarchy)
Low levels of decline
(score = 0-1)
Moderate levels of decline
(score = 2-3)
High levels of decline
(score = 4-6)
Pressure ulcer risk (PURS)
Low risk (score = 0-2)
Moderate risk (score = 35)
High risk (score = 6-8)
Change in Health, End
Stage Disease and Signs
and Symptoms (CHESS)
Low levels of medical
complexity (score = 0-1)
Moderate levels of
medical complexity (score
= 2-3)
High levels of medical
complexity (score = 4-5)
Index of Social
engagement (ISE)

15.35 (24,192)

10.25 (2,479)

89.75 (21,713)

21.08 (33,221)

9.60 (3,189)

90.40 (30,032)

9.39 (14,796)
12.30 (19,839)

7.98 (1,181)
11.59 (2,247)

92.02 (13,615)
88.41 (17,142)

22.11 (34,837)

10.80 (3,762)

89.20 (31,075)

36.88 (58,120)

13.01 (7,560)

86.99 (50,560)

7.98 (12,583)

14.11 (1,775)

85.89 (10,808)

8.84 (13,935)

18.43 (2,568)

81.57 (11,367)

2.50 (3,936)

16.90 (665)

83.10 (3,271)

11.80 (18,601)

11.84 (2,202)

88.16 (16,399)

48.41 (76,298)

12.12 (9,248)

87.88 (67,050)

39.78 (62,697)

13.25 (8,308)

86.75 (54,389)

71.99 (113,447)
27.45 (43,264)

12 (13,616)
13.82 (5,979)

88 (99,831)
86.16 (37,285)

0.56 (885)

18.42 (163)

81.58 (722)

84.47 (133,115)

11.26 (14,987)

88.74 (118,128)

14.79 (23,303)

18.77 (4,374)

81.23 (18,929)

0.75 (1,178)

33.70 (397)

66.30 (781)

63

Low levels of engagement
(score = 0-1)
Moderate levels of
engagement (score = 2-3)
High levels of engagement
(score = 4-6)
Depression Rating Scale
(DRS)
Low levels of depressive
symptoms (score = 0-2)
Moderate levels of
depressive symptoms
(score = 3-5)
High levels of depressive
symptoms (score = 6-14)
Antidepressant use
No
Yes

20.79 (32,771)

23.33 (7,644)

76.67(25,127)

40.66 (64,084)

12.20 (7,817)

87.80 (56,267)

38.54 (60,741)

7.07 (4,297)

92.93 (56,444)

79.64 (125,509)

9.58 (12,020)

90.42 (113,489)

15.61 (24,597)

21.29 (5,237)

78.71 (19,360)

4.75 (7,490)

33.39 (2,501)

66.61 (4,989)

54.66 (86, 136)
45.34 (71,460)

11.30 (9,732)
14.03 (10,026)

88.70 (76,404)
85.97 (61,434)

Table 2: Sociodemographic characteristics by status of apathy of residents newly admitted to the
Canadian LTCF between 2015 and 2019 (N=157,596).

64

Disease diagnoses of participants

Dementia
Hypertension
Arthritis
Diabetes Mellitus
Depression
Anxiety disorder
Cancer
Parkinson
Schizophrenia

Manic depressive
Traumatic brain injury
Multiple sclerosis
Hyperthyroidism
Amyotrophic lateral sclerosis
0%

25%

Present

50%

75%

100%

Absent

Figure 5: Disease diagnoses of residents newly admitted to the Canadian LTCF between 2015 and 2019
(N=157,596).

65

Prevalence of Apathy by Province
Percentage
25

Yukon Territory
(6.8%)

Territory

6.8
Yukon
Territory
6.8

British
Columbia
16.9

Newfoundland &
Labrador (18.1%)

18.1
Alberta
17

Saskatc…Manitoba
13.7
25
Ontario
8.4

Saskatchewan (25%)
Powered by Bing
© GeoNames, Microsoft, TomTom

Figure 6: Prevalence of apathy among the newly admitted Canadian LTCF residents by province

66

Figure 7: The Biopsychosocial Model of Apathy in LTCF

67

Prevalence of apathy
The prevalence of apathy among Canadian LTCF residents, as measured by the Apathy
Index of the MDS 2.0 was 12.5% (Table 3). The prevalence of apathy was higher among
residents who were under 65 years of age (14.2%) than among those aged 85 years and above
(11.9%). Apathy was nearly twice as prevalent among residents of small LTCF compared to
those residing in large LTCF (19.6% vs. 11.3%). Additionally, geographical region influenced
the prevalence of apathy; it ranged from 6.8% in Yukon to 25.6% in Saskatchewan (Figure 6).
Apathy was reported by the highest proportion of individuals (21%) entering LTCF via inpatient
psychiatric services, as opposed to individuals who entered the facilities via private homes and
were not receiving home care (9.6%). Apathy was more frequent among English speakers
(13.1%) compared to French speakers (11.8%) and speakers of other languages (9.2%). No
significant differences were found between those who lived alone before admission to LTCF and
those who did not.
Furthermore, apathy was more prevalent among residents who had a high score (4+,
severe impairment) on various outcome scales than among those who had a low score (0-2, low
impairment) (Table 2), including the ADLS-hierarchy (13.3% vs. 11.4%), PURS (18.4% vs
12%), CPS (16.9 % vs 10%), DRS (33.4% vs. 9.6%) and CHESS scales (37.7% vs. 11.3%). In
addition, the proportion of residents who had a low score on the ISE (0-1, low engagement) and
exhibited apathy was higher in comparison with those who had a high score (4+, high
engagement) on this item (23.3% vs. 7.1%). Apathy was more prevalent among residents who
were using anti-depressants compared to those who did not (14% vs. 11.3%).

68

Predictors of apathy
Figure 7 shows the theoretical framework for the regression results modelling the
predictors of apathy among Canadian LTCF newly admitted residents. With regards to biological
variables (Table 2), the predictors of apathy were age groups- less than 65 years of age (OR 1.26
(95% CI 1.16, 1.37), between 65 and 74 years of age (OR 1.30 (95% 1.22, 1.39) and between 75
and 84 years of age (OR 1.11 (95% CI 1.06, 1.16); weight loss (OR 1.49 (95% CI 1.38, 1.2);
hearing- minimal difficulty (OR 1.13 (95% CI 1.08, 1.19), hears in special situations (OR 1.19
(95% CI 1.11, 1.26), and highly impaired (OR 1.62 (95% CI 1.41, 1.85); vision- minimal
impaired (OR 1.17 (95% CI 1.12, 1.23), moderately impaired (OR 1.39 (95% CI 1.29, 1.50), and
severely impaired (OR 1.14 (95% CI 1.11, 1.17). Concerning psychological variables (Table 2),
severe cognitive impairment (OR 2.60 (95% CI 2.42,2.28) was the strongest predictor of apathy.
With respect to social variables (Table 2), the predictors were French language (OR 1.27 (95%
CI 1.15,1.42); unspecified marital status (OR 1.14 (95% CI 1.04, 1.24); medium sized facility
(OR 1.18 (95% CI 1.14,1.22), and facility province (Saskatchewan) (OR 1.58 (95% CI 1.491.68).

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Biological Variables
Sex
Male
Other (e.g. Hermaphrodite)
Age group
Less than 65
65-74
75-84
Weight gain (Reference = No)
Weight loss (Reference = No)
Hearing
Minimal difficulty
Hears in special situations
Highly impaired
Uses speech to communicate
(Reference = No)
Vision
Minimal impaired
Moderately impaired
Highly impaired
Severely impaired
Psychological variables
Borderline intact
Mild impairment
Moderate impairment
Moderate severe impairment
Severe impairment
Very severe impairment
Social Variables
Primary language
French
Other
Marital status
Never married/widowed/
separated/divorced
Unspecified
Facility size
Medium
Small
Facility Province
Manitoba
Newfoundland & Labrador

Adjusted Odds Ratio
(95% Confidence limits)
Reference = Female
1.09 (1.04-1.13)
1.28 (0.60-2.72)
Reference = 85+ years
1.26 (1.16-1.37)
1.30 (1.22-1.39)
1.11 (1.06-1.16)
1.13 (0.97-1.32)
1.49 (1.38-1.62)
Reference = Adequate
1.13 (1.08-1.19)
1.19 (1.11-1.26)
1.62 (1.41-1.85)
0.93 (0.83-1.04)
Reference = Adequate
1.17 (1.12-1.23)
1.39 (1.29-1.50)
1.04 (0.94-1.15)
1.37 (1.18-1.59)
Reference = Intact
1.51 (1.40-1.63)
1.40 (1.30-1.49)
1.72 (1.62-1.84)
1.89 (1.75-2.05)
2.60 (2.42-2.80)
2.34 (2.12-2.60)
Reference = Eng
1.27 (1.15-1.42)
0.78 (0.74-0.82)
Reference = Married
0.88 (0.81-0.96)
1.14 (1.04-1.24)
Reference = Large
1.18 (1.14-1.22)
1.11 (0.10-1.23)
Reference = British Columbia
0.80 (0.74-0.93)
1.06 (0.98-1.16)

p value
<0.0001
0.52
<0.0001
<0.0001
<0.0001
0.13
<0.0001
<0.0001
<0.0001
<0.0001
0.20
<0.0001
<0.0001
0.51
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
0.11
0.01
<0.0001
0.57
<0.0001
0.24
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Ontario
0.46 (0.44-0.48)
<0.0001
Saskatchewan
1.58 (1.49-1.68)
<0.0001
Yukon
0.33 (0.21-0.53)
<0.0001
Table 3: The biopsychosocial predictors of apathy among Canadian LTCFs residents, 20152019 fiscal year
Discussion
This study aimed to investigate the prevalence and predictors of apathy among residents
of Canadian LTCF. Apathy was present in all age groups and various disorders. The prevalence
of apathy as measured by the Apathy Index of the MDS 2.0 was 12.5% among a large sample of
the Canadian LTCF residents. This corroborates with previous studies, including a Dutch study
involving 199 residents that reported a prevalent rate of 12% (Aalten et al., 2005), a UK study
involving 1,419 participants utilizing the Neuropsychiatric Inventory to rate apathy that reported
the prevalence of clinically significant apathy to be 21.4% (Sommerlad et al., 2022), and another
Dutch study comprising of 290 LTCF residents from nine LTCF which found that the prevalence
of apathy was 19% (Wetzels et al., 2010). However, the prevalence rate in the current study was
substantially lower than the range of 19-88% as reported in a systematic review and metaanalysis of 25 studies (Zhu et al. 2019) and a study in the Netherlands which found a 28%
prevalence of apathy among LTCF residents with stroke (van Almenkerk et al., 2015). The
discrepancies in the prevalence rates across studies could be attributed to various factors,
including differences in the demographic characteristics of the participants, settings of the
studies, and methodologies employed in assessing apathy.
In the current study, the measurement tool used to assess apathy focused only on two
items: “withdrawal from activities of interest (e.g., no interest in long-standing activities or being
with family, friends)” and “reduced social interaction” (e.g. less talkative, more isolated) (Morris
et al. 2012, p.2) suggesting that the behavioral and social domains of apathy were captured while
the emotional and cognitive domains of apathy were not accounted for. Nonetheless, in the
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absence of a comprehensive tool to measure apathy, the Apathy Index of the MDS 2.0 provides
an important starting point to increasing awareness about apathy in the Canadian LTCF.
In relation to the prevalence of apathy among different age groups, the current study
revealed that apathy was more frequent among residents who were younger than 65 years
compared to those in the older age group (85 years and over). This is consistent with previous
studies investigating the prevalence of neuropsychiatric symptoms in young-onset dementia
(Bauhuis et al., 2020; Mulder et al., 2014; 2016), but in contrast to studies involving persons
with advanced dementia (Selbaek et al., 2014; van Reekum et al., 2005; van Vliet et al., 2012;
Zuidema et al., 2009). It has been suggested that apathy is one of the primary reasons for
institutionalization in individuals with young-onset dementia (Bakker et al., 2013). Early
identification of apathy in this age group may be valuable for testing experimental medicines
aimed at this syndrome or its associated symptoms (Dujardin et al., 2014).
Furthermore, apathy and depression frequently co-occur, as observed in over half (21.3%
with moderate and 33.4% with high scores on DRS) of our sample. While some symptoms
overlap between apathy and depression, each condition has distinct characteristics (Levy et al.,
1998; Lueken et al., 2007; Starkstein et al., 2005): apathy is marked by blunted emotional
response, indifference, low social engagement, diminished initiation, and poor persistence
(Ishizaki & Mimura 2011); depression, on the other hand, includes dysphoria, suicidal ideation,
self-criticism, guilt feelings, pessimism, and hopelessness (Levy et al., 1998). Furthermore,
apathy and depression differ in the brain regions implicated and have different progression
patterns (Fahed & Steffens, 2021). This has implication for the use of anti-depressants in this
population because treatment with selective serotonin reuptake inhibitor (SSRI) antidepressants

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may worsen apathy (Masdrakis et al., 2023). In our study, 14% of residents who exhibited apathy
were treated with antidepressants.
Regarding the biological predictors of apathy, age emerged as a predictor, demonstrating
that younger residents (<65 years) are more likely to be apathetic compared to older age groups.
This finding aligns with the results of previous cross-sectional studies (Appenholf et al. 2019;
Jao et al. 2018) and appears to be somewhat counterintuitive given that one might expect higher
frequencies of apathy in the oldest age group, suggesting that younger residents in LTCF might
experience factors that predispose them to apathy, such as early onset dementia or other
comorbidities that necessitate long-term care at a younger age or it might be that younger
individuals in LTCF might experience greater challenges in adjusting to the institutional
environment, leading to higher levels of apathy (Van Malderen et al., 2013). The relatively high
prevalence of apathy in the 65-74 and 75-84 age groups emphasizes the need for targeted
interventions across different age categories.
In congruence with previous research, male sex was a predictor of apathy (Jao et al.,
2020; Vilalta-Franch et al., 2013). This highlights the importance of personalized and
sex/gender-sensitive approaches to enhancing the well-being of LTCF residents with apathy. In
addition, weight emerged as an important variable, with weight loss associated a higher
likelihood of apathy compared to those without. Volicer et al. (2013) noted a similar result,
however, due to the cross-sectional nature of this study, it is unclear which came first, the weight
change or the apathy and to which direction the temporal sequence may occur. Nonetheless,
weight loss management through avoidance of certain medications that increases the risk of
anorexia such as psychoactive medications and adequate treatment of medical disorders
associated with anorexia including vit B12 deficiency and gastrointestinal disorders, may play a

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crucial role in mitigating the development of apathy among newly admitted residents in LTCF
(Volicer et al., 2013).
Sensory impairments in hearing and vision also emerged as significant predictors.
Various levels of hearing impairments (minimal, moderate, and high) were associated with a
higher likelihood of apathy than adequate hearing. Similarly, various levels of visual impairment
were associated with apathy, with moderately impaired vision showing the highest likelihood
(adjusted odds ratio: 1.39; p<0.0001). Speech impairment, indicated by an adjusted odds ratio of
1.14 (p<0.0001), suggests that residents with speech impairment are more likely to exhibit
apathy than those without. This could be attributed to the potential isolation, communication
barriers, and resultant reduced social engagement experienced by individuals with speech
impairment. Konig et al. (2019) highlighted the efficacy of using speech characteristics,
including acoustic, semantic, and prosodic features, as reliable indicators of apathy among
individuals with speech impairments. Notable changes in speech, such as flatter intonation and
decreased volume, alongside reduced vocabulary, and varied content, mirror the emotional and
motivational deficits typical of apathy. Prosodic features such as extended pauses and speech
disruptions also indicate apathy-related cognitive and emotional disturbances (Konig et al.,
2019). In LTCF, early identification of apathy among residents with speech impairments by
integrating automatic speech analysis into routine assessments can enhance care and enable
timely intervention. These findings suggest that interventions aimed at improving sensory
function might mitigate apathy in this population.
In terms of psychological factors, this current study showed that cognitive performance,
as measured by CPS, has a significant association with apathy among newly admitted Canadian
LTCF residents. This association was stronger for all levels of cognitive impairment. The early

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recognition of high cognitive performance scores could be instrumental in implementing early
interventions and tailoring care plans for residents in LTCF. More importantly, interventions
aimed at stimulating and supporting executive functions may be beneficial in mitigating the
progression of apathy (Drijgers et al., 2011). Additionally, considering that apathy is associated
with poor initiation, structured, and guided activities that encourage participation and
engagement without relying heavily on self-initiation might be effective in promoting social
interaction and mental stimulation among LTCF residents (Drijgers et al., 2011). Evidence also
suggests that the presence of apathy is a potential risk factor for conversion to dementia in people
with mild cognitive impairment (Lanctôt et al., 2017; Robert et al. 2006; van Dalen et al., 2018).
The progression from mild to severe cognitive impairment showing a graded increase in the odds
of apathy underscores the importance of early cognitive interventions and continuous monitoring
to manage apathy effectively.
Social factors play an important role in predicting apathy. In this study, language,
particularly French, shows a statistically significant association with apathy, with adjusted odds
ratio 1.27 (p<0.0001), indicating that residents who speak this language are more likely to
exhibit apathy compared to those speaking English language. This suggests that linguistic and
possibly cultural factors may play a role in the display or recognition of apathy among LTCF
residents. Further, our findings suggests that those who speak other languages are at lower odds
of exhibiting apathy (adjusted odds ratio: 0.78; p<0.0001). This underscores the importance of
language concordance (Hsueh et al., 2021) in the recognition of apathy among speakers of other
languages in LTCF. It would be insightful to explore whether these associations are influenced
by factors such as communication barriers, social integration, cultural perceptions of mental
health, and emotional expression. Additionally, marital status impacts apathy, with those of

75

unspecified marital status showing higher odds compared to residents who were married. This
may point to the complexities of social support systems and their influence on residents’ health
outcomes.
Facility size also emerged as a crucial predictor, with medium sized facility associated
with a higher likelihood of apathy (adjusted odds ratio 1.18, p<0.0001) compared to large sized
facility, which might be due to differences in the availability of resources and activities
(Zimmerman et al., 2005). The relationship between institutional environment and apathy is well
documented (Chaudhury et al., 2017; Jao et al. 2015; 2019). This finding also aligns with the
broader literature highlighting the protective effects of personalized care on apathy (Zuidema et
al., 2010). Smaller facilities may facilitate more personalized care due to a lower staff-to-resident
ratio (Zuidema et al., 2010). This personalized attention can be pivotal in recognizing and
addressing early signs of apathy. In contrast, medium and larger facilities, despite having more
resources, might struggle with providing individualized care to the same extent.
Furthermore, the province of the facilities emerged as a notable predictor of apathy, with
residents in Manitoba, Ontario, and Yukon showing statistically significant lower likelihood of
apathy while those in Saskatchewan demonstrating a higher likelihood of apathy compared to
residents in British Columbia. This finding highlights the importance of considering
geographical differences when developing interventions for apathy rather than just focusing on
individual and institutional factors because geographical variation could be influenced by various
factors, such as differences in healthcare policies, and socio-cultural contexts across provinces.
This finding warrants further exploration to better understand the underlying mechanisms.

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Implication for practice/policy
In this study, apathy was examined from a biopsychosocial perspective, and the results of
our findings showed that various biological, psychological, and social factors are associated with
apathy among residents in LTCF. To this end, health care professionals and policymakers should
consider the following:
•

Create an awareness campaign about apathy at the institutional, provincial, and national
levels.

•

Develop a standard assessment tool for evaluating apathy in LTCF that considers the needs
and preferences of younger people.

•

Screen for apathy in all residents presenting with high cognitive performance scores using
both systematic speech analysis and apathy screening tools to enhance early detection of
apathy.

•

Incorporate technology-based meaningful activities into existing programs to keep residents
engaged during the day while simultaneously preventing additional workloads for care staff.

Strengths and limitations of the study
This study has several strengths, including the use of a large population sample, which is
representative of the LTCF population. This enhances the generalizability of the findings across
Canadian populations and provides a solid cross-section of apathy within the LTCF.
Additionally, the results indicated that the prevalence of apathy among Canadian LTCF residents
is comparable to existing studies, signifying the utility of the apathy index in the early detection
of apathy among this population. This study also provides a thorough and multifaceted
exploration of predictors of apathy, encompassing biological, psychological, and social factors,
and offers a holistic view of the factors influencing apathy among LTCF residents.
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While this study was the first to investigate the prevalence of apathy among a very large
sample of residents across Canadian LTCF, using data from the MDS 2.0, a validated tool
approved for use in all healthcare settings across Canada, not all provinces and territories are
included. This suggests that caution should be exercised when generalizing the results to all the
provinces and territories in Canada. Furthermore, the use of this data, which is not primarily for
clinical diagnosis or research purposes, might have made it difficult to examine more nuanced
relationships between apathy and the various variables included in this study. Future studies
should adopt a more rigorous methodology to examine these relationships.
Conclusion
This study examined the prevalence and predictors of apathy among residents of
Canadian LTCF. The study found a complex interaction between apathy and various biological,
psychological, and social factors. Apathy was found to be associated with biological indicators
such as age, weight loss, and sensory deficits, highlighting the complicated relationship between
apathy and physical health of LTCF residents. Psychological factors, particularly cognitive
impairment, have a complex relationship with apathy. Severe cognitive impairment was
associated with the highest risk for apathy than very severe impairment. This indicates that
cognitive function and apathy are not linearly related. The study also found that marital status,
facility size, and facility province were significantly associated with apathy. This highlights the
impact of social settings and relationships on LTCF residents' well-being. Apathy was also
predicted by language underscoring the importance of efficient communication and meaningful
social interactions for preventing apathy.
Given these findings, a comprehensive and individual-focused approach to address and
reduce apathy LTCF is essential. Interventions must address the physical, social, and
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psychological wellbeing of residents with apathy. Future research should examine the qualitative
aspects of social connections and activity engagement, as well as their interactions with
biological and psychological parameters, to better understand how they affect apathy in LTCF
residents. This may help to develop approaches and interventions to improve the quality of life
and well-being of LTCF residents. It is important to note that facility province was a strong
predictor of apathy, and to the best of the author’s knowledge, no research has explored this
factor. Future studies should expand this factor and explore more effective interventions to
mitigate apathy at the provincial level.

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Chapter Six: The Prevalence and Risk Factors of Apathy among the Canadian Long-Term
Care Residents with Alzheimer’s Disease and Related Dementias
This chapter addressed RQ 3 “What is the prevalence and risk factors for apathy
among the Canadian LTCF residents with dementia?” and has been published in the Journal of
Alzheimer’s Disease as:
Agboji, A., Freeman, S., Banner, D., Armstrong, J., & Martin-Khan, M. (2024). The prevalence
and risk factors of apathy among the Canadian long-term care residents with Alzheimer's disease
and related dementias. Journal of Alzheimer's disease: JAD, 102(2), 382–395.
https://doi.org/10.3233/JAD-240370
Abstract
Background: Apathy is a prevalent and debilitating neuropsychiatric symptom among
persons living with Alzheimer's disease and related dementias, particularly those residing in
LTCF. Despite its profound effects on the quality of life for both residents and their caregivers,
apathy remains underrecognized and poorly understood in the context of dementia care.
Objective: To investigate the prevalence and biopsychosocial characteristics of apathy
among newly admitted residents with dementia in Canadian LTCF using an Apathy Index
derived from the interRAI Minimum Data Set (MDS) 2.0.
Methods: This cross-sectional study analyzed data from newly admitted residents with
dementia from various LTCF (N=97,789) across seven Canadian provinces between 2015 and
2019. Logistic regression analysis was performed to determine the relationship between apathy
and multiple variables including sociodemographic and clinical variables. The biopsychosocial
model of health was used to guide analysis.
Results: The prevalence rate of apathy among the Canadian long-term care residents with
Alzheimer’s disease and related dementias was 13.1%. Apathy was associated with various
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variables including male sex, pain, use of psychotropics, high ADL-hierarchy scores, depression,
aggression, severe cognitive impairment, and insomnia. Preferences for certain activities such as
card games, art and craft, reading, music and exercise were inversely related to apathy while
gardening was not.
Conclusions: By shedding light on this complex phenomenon within a Canadian context,
we recommend that targeted interventions and improved care strategies to enhance the wellbeing of persons living with dementia should be prioritized in LTCF.
Introduction
Dementia, a chronic and progressive syndrome characterized by cognitive impairment
and functional decline, poses a significant public health challenge in the twenty-first century. It
affects over 47 million people worldwide and as the global population ages, it is anticipated that
the prevalence of dementia will triple by 2050 (World Health Organization [WHO], 2019).
which will have significant implications for healthcare systems worldwide. A report by the
Alzheimer Society of Canada (2020) estimated that 564,000 Canadians were living with
dementia in 2020. This number is expected to increase to 937,000 by 2031. This escalating trend
highlights the need for extensive research into the various facets of dementia, including its lesser
known but equally debilitating symptom, apathy.
Apathy, marked by reduction in motivation or interest, goal-directed actions, affect and/o
social interactions, is one of the most prevalent and clinically significant behavioral symptoms
observed in people living with dementia, especially those in LTCF (Robert et al., 2009; Brodaty
& Burns, 2012; Ginsberg et al., 2017; Robert et al., 2006; Robert et al., 2012; Massimo et al.,
2018; van Reekum et al., 2005). The prevalent rates of apathy among people living with
dementia vary ranging between 12% and 100% depending on a few factors including
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methodologies for apathy assessment, severity of dementia and co-morbidities (Aarsland et al.,
2009; Diehl-Schmid et al., 2006; Leung et al., 2021; Peavy et al., 2013). In a US study, for
instance, it was observed that 84.1% of LTCFs’ residents with dementia had apathy (Wood et al.,
2000). A comprehensive review found that the frequency of apathy was 27% among community
dwelling population of 329 individuals without dementia and 69% among 162 residents with
dementia admitted to a specialized dementia unit (Starkstein et al., 2006). A German study also
showed that 7% of cognitively intact residents, 8% of those with mild cognitive impairment, and
85% of residents with dementia exhibited apathetic behaviors (Leuken et al., 2007). In a crosssectional, observational study carried out in the Netherland which involved a sample of LTCF
residents with stroke, the result demonstrated that apathy was prevalent in 28% of this population
(van Almenkerk et al., 2015). Tagariello (2009) also reviewed the literature on apathy (but didn’t
include the previous studies) in dementia and noted that it is the most common neuropsychiatric
syndrome in Alzheimer's disease, affecting 19-76% of residents, and difficult to distinguish from
depression.
Studies have investigated the association between apathy and various neuropsychiatric
symptoms such as depression (Ang et al., 2018; Batail et al., 2018; van Almenkerk et al., 2015),
anhedonia (Ang et al., 2018), fatigue (Daumas et al., 2022; Kuppuswamy, 2017), and agitation
(Mouriz-Corbelle et al., 2021) among LTCF residents with dementia but the results are mixed.
For example, a study involving people with Alzheimer’s dementia found that apathy is strongly
associated with depression (Starkstein et al., 2006). In contrast, another study reported that
apathy is not clinically significantly associated with depression (van Almenkerk et al., 2015).
Additionally, a study by Jao et al. (2019) examining the relationship among apathy, depression
and agitation, no relationship was found between apathy and these disorders. Furthermore,

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certain contextual factors have been linked with apathy among LTCF residents with dementia.
For example, Jao et al. (2015) found that care environments with clear and sufficient stimulation
were significantly associated with lower resident apathy levels. Engagement in activities has also
been inversely associated with apathy in dementia, indicating that increased activity participation
among residents leads to reduced symptoms of apathy (Ellis et al., 2016). Vilalta-Franch (2012)
identified the use of antipsychotic medication as the sole risk factor for apathy in dementia.
Moreover, persons living with dementia who resided with someone other than their spouses were
found to be more susceptible to apathy compared to those living with their spouses (Clarke et al.,
2008).
Despite the significance of apathy among residents living with dementia, its associative
characteristics are still not entirely understood (Massimo et al., 2018). More importantly,
research on apathy among the Canadian LTCF residents with dementia is limited. Further, while
existing studies have primarily focused on the neurobiological underpinnings of apathy in
dementia, including changes in specific brain regions and neurotransmitter systems (Mortby et
al., 2018; Steffens et al., 2022), a comprehensive study linking resident-related biological,
psychological, and social characteristics that increase the risk of apathy is lacking. Additionally,
most studies did not prioritize apathy as the focus, and research examining factors associated
with apathy in dementia, distinct from depression or other behavioural issues, remains scarce
(Lanctot et al., 2023; Parrotta et al., 2023). These gaps underscore the need for a more holistic
investigation into apathy in dementia among LTCF residents, particularly in the Canadian
context given its diverse population and unique healthcare policies (Martin et al., 2018). The
purpose of this study was to examine through the lens of the biopsychosocial model of care
(Engel, 1977), the prevalence and the associative biopsychosocial characteristics of apathy

83

among the Canadian LTCF residents with dementia (Alzheimer and non-Alzheimer), drawing
from the MDS 2.0 dataset. Such research is instrumental to inform design of targeted
interventions and clinical practice guidelines to best identify, manage, and possibly prevent
apathy in this population.
Materials and Methods
Settings and Participants
This cross-sectional study used secondary data derived from MDS 2.0 dataset collected
through the Continuing Care Reporting System (CCRS) at the Canadian Institute of Health
Information (CIHI) across six provinces (Alberta, British Columbia, Manitoba, Nova Scotia,
Saskatchewan, and Ontario) and one Territory (Yukon) in Canada (N=97,786). The MDS 2.0 is a
mandated standardized assessment instrument for use in most LTCF across Canada and provides
comprehensive personal-level information about residents that informs decision-making in
developing a care plan that reflects their needs, preferences, and strengths (Hirdes et al., 2011).
The assessment is completed by trained healthcare staff (usually staff nurses) using information
from multiple sources including observation, resident interview, medical records, and
consultation with team members and other healthcare professionals, including attending
physicians, social workers, physical, occupational, speech, or recreation therapists, dieticians,
and pharmacists (Freeman et al., 2017; Hirdes et al., 2011).
Embedded in the MDS 2.0 are the outcome scales, also known as clinical assessment
protocols (CAPs). Included in this study are the Cognitive Performance Scale (CPS) which
monitors changes in cognitive status (Hirdes et al., 2008), and consisted of five items including
comatose, short-term memory, cognitive skills for daily decision making, express
communication and eating (CIHI, 2013). The score ranges from 0-6. This score was recoded into
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three groupings: 0-1 (no/mild impairment), 2-3 (moderate impairment) and 4-6 (severe
impairment) (Carpenter, 2006; Fredericksen et al., 1996; Hartmaier et al., 1995; McConnell et
al., 2002; Morris et al., 2012), the Depression Rating Scale (DRS) assesses mood and behavior
(Perlman & Hirdes, 2008). The DRS comprises of seven items including negative statements,
persistent anger, expression of unrealistic fears, repetitive health complaints, repetitive anxious
complaints, sad, pained, worried facial expression; and crying and tearfulness. The score on this
scale ranges from 0-14. This was recoded into 3 levels: 0-2 (no/mild), 3-5 (moderate), and 6-14
(severe) (Burrows et al., 2000). A score of 3 or more on the DRS may indicate a potential or
actual depression symptoms (Hirdes et al., 2008); the Activity of Daily Living Self-Performance
Hierarchy Scale (ADL-hierarchy) reflects the process of resident’s disability by grouping ADL
performance into different stages: early loss (personal hygiene), middle loss (toileting and
locomotion), and late loss (eating) (Morris et al., 2013). The score ranges from 0 (independent)
to 6 (total dependence). The score was recoded as 0-1 (no loss), 2-3 (moderate loss) and 4-6
(severe loss); the Aggressive Behavior Scale (ABS) measures aggression, and includes four
items-verbally abusive, physically abusive, socially inappropriate/disruptive behavior and resists
care (Hirdes et al., 2008). The score ranges from 0-12 (Freeman et al., 2017). This score was
recoded into three categories: 0-2 (no/mild), 3-5 (moderate) and 6-12 (severe), and the pain scale
which measures the frequency and intensity of pain among the residents. The scores range from
0 to 3 with higher values indicating severe pain (Fries et al., 2001; Zyczkowska et al., 2007).
The sample for this study included residents diagnosed with dementia who participated in
the admission assessments of the MDS 2.0 between April 2015 and March 2019. Excluded from
the study were residents with missing data, those in a comatose state, or those without dementia
diagnosis. Selection of variables was based primarily on the definition of each component of the

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biopsychosocial model of care as proposed by Engel (1977), availability of variables, gaps
identified in extant literature and co-morbidities of dementia such as depression, anxiety, and
cognition (Johansson et al., 2020; Levy et al., 1998; Starkstein et al., 2006). In the MDS 2.0
assessment, the diagnosis of dementia and comorbidities is based on the International Statistical
Classification of Diseases and Related Health Problems (ICD-10) as published by the World
Health Organization (WHO) (CIHI, 2018).
Apathy measures
We used two items from the MDS 2.0, heretofore referred to as the Apathy Index to
measure apathy. Each of these two items were originally scored by CCRS as follows: 0 =
Indicator not exhibited in last 30 days; 1 = Indicator of this type exhibited up to 5 days a week; 2
= Indicator of this type exhibited daily or almost daily (6, 7 days a week). We converted these
two items into a dichotomous variable. Thus, a score of 0 indicates non-apathetic and 1 is
apathetic. This classification is based on the framework for apathy assessment proposed by
Volicer et al. (2013) which they referred to as the ‘Apathy Scale’. According to Volicer et al.
(2013), the Apathy Scale measures apathy by focusing on two specific items from the MDS 2.0
including withdrawal from activities of interest and reduced social interaction. In this study,
apathy was conceptualized as the presence of one or both two items suggesting that a score of 0
is non-apathetic and 1 is apathetic. The study further cited the reliability of the apathy scale as
alpha values of 0.88 to 0.89. These values suggest a high level of internal consistency for the
items measuring apathy within the MDS 2.0 meaning that it measures the same underlying
concept of apathy consistently across different assessments. Additionally, these two items are
core symptoms of apathy included in the screening questions of the Neuropsychiatric Inventory
and have also demonstrated a high degree of internal consistency (Cummings et al., 1994).

86

Utilizing instruments that assess one or more domains of apathy can potentially enhance targeted
treatment of apathy in dementia residents (Massimo et al., 2018).
Theoretical framework
Taking into account the combined effects of biological, psychological, and social factors
on apathy, this study was grounded in the biopsychosocial model as its theoretical basis (Engel,
1977; Bolton & Gillett, 2019; Ghaemi, 2009; Tripathi et al., 2019). As highlighted by Engel
(1977), biological factors encompass genetic influences, neurochemical processes, and other
physiological aspects that contribute to the development and maintenance of health and disease;
psychological factors relate to an individual's mental processes and behavior that influence health
and disease, and social factors refer to the broad range of influences stemming from the societal
and environmental context in which individuals live. Accordingly, variables were categorized as
follows: biological (age, sex, pain, use of psychotropic medications and ADL-hierarchy),
psychological (DRS, CPS, ABS, insomnia, and wandering), and social (language, marital status,
and activity preferences) variables.
Statistical analyses
Analysis of data involved the use of SAS software version 9.4. (SAS Institute, 2013).
Descriptive statistics were conducted to describe the characteristics of the study sample.
Bivariate analyses used chi-square to determine the significance of the relationship of apathy
with various variables based on findings from existing literature or gaps identified in the
literature. Logistic regression was conducted to determine the association between apathy and
various variables that are associated with apathy in dementia. The prevalence of apathy was
defined as the percentage of LTCF residents with dementia with an apathy score of 1. An alpha
level of p <0.05 was considered statistically significant.

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Results
Table 4 shows the socio-demographics of the study sample. Out of the total sample of
97,786, most were residents with non-Alzheimer’s dementia (82%, n=80,170). More than half of
the sample were female (64%) and 53% were aged 85 years and older, 64% were never
married/widowed/divorced/separated, 14% lived alone before admission, 84% were English
speakers, 70% lived in a large LTCF (over 100 beds), and the majority lived in Ontario (57%).
Over two-thirds participated in the assessment (79%), 66% were prescribed psychotropic (antidepressants, hypnotics, anti-anxiety, and anti-psychotic) medications and 24% experienced mild
pain. Residents have various comorbidities of neuropsychiatric disorders including depression
(24%), anxiety disorders (11.5%), Parkinson’s disease (5.8%), multiple sclerosis (0.3%),
Huntington’s chorea (0.1%), amyotrophic lateral sclerosis (0.1%), manic depressive (1.4%),
schizophrenia (1.3%) and traumatic brain injury (0.9%).
Figure 8 shows the activity preferences of the study sample. Majority of the residents
preferred listening to music (79%) to other types of activities including talking (78%), watching
TV (65%), exercise (43%), card games (36%), spiritual activities (36%), reading (31%), art and
craft (23%), trips (15%), gardening (14%), helping others (13%), and walking (4%).
Prevalence of apathy
The prevalence of apathy among LTCF residents with dementia was 13.1% (n=12,818).
Apathy was more prevalent among residents who were younger than 65 years of age compared
to those who were 85 years and over (17% vs 12%, p = <0.0001). English speakers exhibited a
higher prevalence of apathy compared to residents speaking other languages (14% vs 10%, p =
<0.0001). The prevalence rate of apathy was higher among residents living in small LTCF
compared to those in large LTCF (20% vs 12%, p = <0.0001). No significant difference was

88

found in the prevalence of apathy between residents who lived alone before admission and those
who lived with a spouse or family (13% vs 13%, p = 0.40). Apathy was slightly more frequent
among residents who exhibited wandering behaviors compared to those who did not (14% vs
13%, p = 0.03). The prevalence of apathy was higher among residents who experienced severe
pain compared to those with no pain symptoms (25% vs 12%), and residents who exhibited
insomnia daily showed a higher prevalence of apathy compared to those who did not (30% vs
12%).
Those who indicated preferences for various types of activities have a lower frequency of
apathy than those who did not (Figure 8). These activities included card games (10% vs 15%, p =
<0.0001), helping others (8% vs 14%, p = <0.0001), exercise (9% vs 14%, p = <0.0001 ), trips
(9% vs 14 %, p = <0.0001), art and craft (9% vs 14%, p = <0.0001), spiritual activities (10% vs
15%, p = <0.0001), gardening (10% vs 13%), reading (10% vs 14%, p = <0.0001) , walking
(10% vs 15%, p = <0.0001), talking (11% vs 19%, p = <0.0001 ), music (11% vs 20%, p =
<0.0001), and watching TV (12% vs 17%, p = <0.0001). When stratified by cognitive
performance (supplementary table), apathy prevalence across different activities increases with
the severity of cognitive impairment.
Residents who were diagnosed with co-morbid neuropsychiatric disorders showed a
higher prevalence of apathy than those without these disorders including depression (15 % vs
13%, p = <0.0001), anxiety (15% vs 13%, p = <0.0001 ), manic depressive (15% vs 13%, p =
0.08), schizophrenia (16% vs 13%, p = 0.0009), and traumatic brain injury (17% vs 13%, p =
0.02) and Huntington’s chorea (19.3% vs 14.8%, p=0.10). However, apathy was slightly less
frequent among those with co-morbid certain types of neurodegenerative diseases than those
without, but the results were statistically insignificant. These included multiple sclerosis (13% vs

89

13.1%, p = 0.87), Parkinson’s disease (12% vs 13%, 0.08), and amyotrophic lateral sclerosis
(12% vs 13%, p = 0.85).
Biopsychosocial characteristics of apathy in dementia
Table 5 displays the variables that were associated with apathy. Following the
biopsychosocial model of care as a theoretical framework to guide analysis, biologically, the
characteristics associated with apathy were male sex (odds ratio [OR] = 1.13, 95% confidence
interval [CI]:1.09-1.18, p<0.0001), pain (OR = 1.16, 95% CI: 1.11-1.21, p < 0.0001 for mild; OR
= 1.72, 95% CI: 1.66-1.88, p < 0.0001 for moderate; OR = 2.44, 95% CI: 2.07-2.87, p<0.0001
for severe), use of psychotropics (OR = 1.39, 95% CI: 1.00-1.14, p<0.0001) and high ADLhierarchy score (OR = 1.07, 95% C1: 1.00-1.114, p = 0.439) . Among the psychological
variables, depression (OR = 2.05, 95% CI: 1.95-2.14, p<0.0001 for moderate; OR = 3.24, 95%
CI: 3.03-3.46, p<0.0001 for severe), aggression (OR = 1.37, 95% CI: 1.30-1.44, p < 0.0001 for
moderate; OR = 1.51, 95% CI: 1.41-1.62, p<0.0001 for severe), severe cognitive impairment
(OR = 1.15, 95% CI: 1.06-1.24, p = 0.0009) and insomnia (OR = 1.14, 95% CI: 1.34-1.48 for
exhibited up to 5 days; OR = 2.0, 95% CI: 1.80-2.23 for exhibited daily, p<0.0001). In relation to
social variables, the analysis demonstrated that preferences for certain activities except gardening
were inversely associated with apathy (all p<0.0001).

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Total Population
100% (N=97,786)

Apathetic
13.1%
(n=12,818)

Non-Apathetic
86.9% (n=84,968)

p value

Alzheimer

18 (17,616)

12.3 (2,173)

87.7 (15,443)

0.01

Non-Alzheimer

82 (80,170)

13.3 (10,645)

86.7 (69,525)

Less than 65 years

2.7 (2,652)

16.8 (445)

83.2 (2,207)

65-74 years
75-84 years
85 years and over

10.1 (9,859)
33.9 (33,119)
53.3 (52,156)

15.5 (1,527)
13.2 (4,374)
12.4 (6,472)

84.5 (8,332)
86.8 (28,745)
87.6 (45,684)

Female

64.3 (62,861)

12.6 (7,925)

87.4 (54,936)

Male
Other

35.6 (34,838)
0.1 (87)

14 (4,885)
9.2 (8)

86 (29,953)
90.8 (79)

Married

32.8 (27,913)

12.3 (3,441)

87.7 (24,472)

Never
married/widowed/
separated/divorced
Not specified

63.9 (54,458)

12 (6,555)

88 (47,903)

3.4 (2,851)

13.5 (385)

86.5 (385)

No
Yes

86.2 (79,231)
13.8 (12,675)

12.9 (10,238)
13.2 (1,672)

86.3 (68,993)
86.8 (11,003)

Province of LTCF
Alberta
British Columbia

12.1 (11,861)
19.2 (18,896)

19.5 (2,309)
17.6 (3,319)

80.5 (9,552)
82.4 (15,677)

4.6 (4,479)
2 (1,988)

14.5 (651)
19.7 (391)

85.5 (3,828)
80.3 (1,597)

57.2 (55,969)
4.6 (4,464)
0.1 (129)

8.9 (4,977)
26 (1,160)
8.5 (11)

91.1 (50,992)
74 (3,304)
91.5 (118)

84.4 (82,549)

13.7 (11,271)

86.4 (82,549)

2.4 (2,345)
13.2 (12,892)

12.1 (284)
9.8 (1,263)

87.9 (2,061)
90.2 (11,629)

Dementia types

Age at admission
<0.0001

Sex
<0.0001

Marital status
<0.0001

Lived alone before
entry to LTCF

Manitoba
Newfoundland and
Labrador
Ontario
Saskatchewan
Yukon
Language
English
French
Other

0.40

<0.0001

<0.0001

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Facility size
Large (100+ beds)
Medium (30-99 beds)
Small (1-29 beds)
Insomnia
Not exhibited in the last
30days
Exhibited up to 5 days
per week
Exhibited daily or
almost daily
Wandering
No
Yes
PAIN
No pain (0)
Mild (1)
Moderate (2)
Severe (3)
Use psychotropic
medications
No
Yes
Resident’s participation
in assessment
No
Yes
Comorbidities
Depression
No
Yes
Anxiety disorders
No
Yes
Parkinson’s disease
No
Yes
Multiple sclerosis
No
Yes

70.8 (69,244)

12.2 (8,321)

88 (60,923)

<0.0001

27.2 (26,625)
2 (1,917)

15.5 (4,115)
19.9 (382)

84.5 (22,510)
80.1 (1,535)

83.9 (81,962)

11.5 (9,429)

88.5 (72,533)

14.3 (13,983)

20.3 (2,833)

79.7 (11,150)

1.9 (1,841)

30.2 (556)

69.8 (1,285)

86.1 (84,168)
13.9 (13,618)

13 (10,958))
13.7 (1,864)

87 (73,214)
86.3 (11,754)

0.031

67.9 (66,421)
23.7 (23,156)
7.6 (7,427)
0.8 (782)

12 (7,989)
13.7 (3,179)
19.5 (1,451)
25.4 (199)

88 (58,432)
86.3 (19,977)
80.5 (5,976)
74.6 (583)

<0.0001

33.9 (33,163)
66.1 (64,623)

10.5 (3,486)
14.4 (9,332)

89.5 (29,677)
85.6 (55,291)

<0.0001

22 (21,493)
78 (76,293)

18.5 (3,977)
11.6 (8,841)

81.5 (17,516)
86.4 (67,452)

<0.0001

75.8 (74,119)
24.2 (23,667)

12.5 (9,234)
15.1 (3,584)

87.5 (64,885)
84.9 (20,083)

<0.0001

88.5 (86,497)
11.5 (11,289)

12.9 (11,126)
15 (1,692)

87.1 (75,371)
85 (9,597)

<0.0001

94.2 (92,099)
5.8 (5,687)

13.2 (12,116)
12.3 (702)

86.8 (79,983)
87.7 (4,985)

0.08

99.7 (97,481)

13.1 (12,779)

86.9 (84,702)

0.87

0.3 (305)

12.8 (39)

87.2 (266)

<0.0001

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Amyotrophic lateral
sclerosis
No
Yes
Huntington’s chorea
No
Yes
Manic depressive
No
Yes
Schizophrenia
No
Yes
Traumatic brain injury
No
Yes

99.9 (97,721)
0.1 (65)

13.1 (12,810)
12.3 (8)

86.9 (84,911)
87.7 (57)

0.85

99.9 (97,696)
0.1 (90)

13.1 (12,801)
18.9 (17)

86.9 (84,895)
81.1 (73)

0.10

98.6 (96,461)
1.4 (1,325)

13.1 (12,623)
14.7 (195)

86.9 (83,838)
85.3 (1,130)

0.08

98.7 (96,525)
1.3 (1,261)

13.1 (12,613)
16.3 (205)

86.9 (83,912)
83.7 (1,056)

0.01

99.1 (96,885)
0.9 (901)

13.1 (12,669)
16.5 (149)

86.9 (12,669)
83.5 (752)

0.02

Table 4: Socio-demographics of newly admitted residents with dementia assessed between 2015 and 2019
by status of apathy.

Variables
Biological factors
Age group (years)

Odds Ratio

(95% CI)

p value

Under 65
65-74
75-84
85+

Reference
0.92
0.78
0.75

0.82-1.03
0.70-0.86
0.68-0.84

0.14
<0.0001
<0.0001

Female
Male
Other

Reference
1.13
0.71

1.09-1.18
0.34-1.47

<0.0001
0.36

No pain
Mild
Moderate
Severe

Reference
1.16
1.72
2.44

1.11-1.21
1.66-1.88
2.07-2.87

<0.0001
<0.0001
<0.0001

No
Yes

Reference
1.39

1.33-1.45

<0.0001

Low (0-1)
Medium (2-3)
High (4-6)

Reference
0.98
1.07

0.92-1.04
1.00-1.14

0.54
0.04

Sex

Pain

Use of psychotropics
ADL hierarchy

93

Psychological factors
DRS (Depression)
No/Mild (0-2)
Moderate (3-5)
Severe (6-14)

Reference
2.05
3.24

1.95-2.14
3.03-3.46

<0.0001
<0.0001

No/Mild (0 -1)
Moderate (2-3)
Severe (4-6)

Reference
0.93
1.15

0.86-1.00
1.06-1.24

0.06
0.01

No/Mild (0-2)
Moderate (3-5)
Severe (6-12)

Reference
1.37
1.51

1.30-1.44
1.41-1.62

<0.0001
<0.0001

Not exhibited
Exhibited up to 5 days
Exhibited daily or almost daily
(Reference = No)

Reference
1.41
2.0
0.99

1.34-1.48
1.80-2.23
0.94-1.05

<0.0001
<0.0001
0.75

Reference
0.97
0.63

0.85-1.10
0.59-0.68

0.59
<0.0001

0.97-1.06
0.98-1.21

0.62
0.19

1.12-1.22
1.04-1.15
1.32-1.46
1.36-1.50
1.03-1.13
1.15-1.27
1.08-1.25
1.03-1.13
1.16-1.27
0.82-0.96
1.43-1.57
1.08-1.26

<0.0001
0.01
<0.0001
<0.0001
0.01
<0.0001
0.01
0.02
<0.0001
0.01
<0.0001
<0.0001

CPS (Cognitive impairment)

ABS (Aggression)

Insomnia

Wandering

Social factors
Language
English
French
Other
Marital status
Married
Never married/widowed/separated/divorced
Unspecified
Activity preferences
Card games/other games
Art and Craft
Exercise/sports
Music
Reading
Spiritual activities
Trips
Walking
Watching TV
Gardening
Talking
Helping others

Reference
1.01
1.08
Reference = Yes
1.16
1.11
1.39
1.43
1.08
1.21
1.16
1.08
1.22
0.88
1.50
1.17

Table 5: Logistic regression modelling the biopsychosocial characteristics of apathy among the newly
admitted Canadian LTCF residents with dementia (N=97,786) assessed between 2015 and 2019.

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Discussion
The prevalence of apathy among newly admitted residents with dementia in Canadian
LTCF was 13.1%. This prevalence is consistent with existing literature, which reports apathy
prevalence rates ranging from 11% to 40% in dementia populations (Makimoto et al., 2019;
Starkstein et al, 2006) but is lower than the frequencies (23.1% and 56%) observed in two Dutch
studies (Holtta et al., 2012; Mulders et al., 2016), and a systematic review of 28 studies which
demonstrated the prevalence rate of 36% (Selbaek et al., 2014). These discrepancies could be
due to differences in the stages of dementia of the participants, or the methodologies used to
assess symptoms. The variation in prevalence rates across studies highlights the importance of
standardized assessment tools and diagnostic criteria for apathy. Moreover, it could have been
that apathy was perceived as a symptom of dementia, and therefore, under or overrated.
Consistent with studies examining apathy in young onset dementia (Bauhuis et al., 2020;
Mulders et al., 2016 ) but in contrast to previous studies investigating apathy in late onset
dementia (Starkstein et al., 2006; Lanctot et al., 2017), a small percentage of our sample falls
into the age group of less than 65 years (2.7%), however, they comprise a sizeable proportion
exhibiting apathy in comparison with those who are 85 years and over (17% vs 12%). In
addition, our analysis found that apathy prevalence was slightly higher in non-Alzheimer
dementia in comparison with Alzheimer dementia (13% vs 12%). This may suggest the
difference in neuroanatomical changes between these types of dementias and reflect the type of
dementia common in this population (Devanand et al., 2022). These findings underscore the
importance of age and disease specific interventions in mitigating apathy in this population.
Although females constitute most of the population, the proportion of individuals with
apathy in this sex category is slightly lower than males. This is congruent with the findings

95

reported by Holtta et al. (2012) where apathy was observed to be more prevalent in males than
females. Previous research has indicated that when compared to females, males with dementia
often exhibit more severe neuropsychiatric symptoms, including apathy, potentially due to
differences in disease progression (Mouriz-Corbelle et al., 2021; Mortby et al., 2022). In
addition, we found that marital status does not have a significant impact on the likelihood of
apathy among newly admitted Canadian LTCF residents with dementia. One possible
explanation is that while marital status might traditionally be seen as a proxy for social support,
residents in LTCF may receive various forms of social interaction and support from staff, other
residents, and structured activities that mitigate the lack of a spouse or partner or it could be that
residents may adapt to the structured environment, where regular interaction with care staff and
communal activities provide substantial social support, potentially reducing differences between
married and unmarried residents.
In congruence with previous research, our analysis showed that apathy was more
prevalent among residents with co-morbid neuropsychiatric disorders, including depression,
anxiety disorder, traumatic brain injury (TBI), and schizophrenia (Grossman et al., 2013; Holtta
et al., 2012; Starkstein et al., 2009; van Almerk et al., 2015; Zuiderma et al., 2007). This
highlights the complex interplay between apathy and other neuropsychiatric conditions in
residents with dementia and underscores the need for a multidisciplinary approach to dementia
care. This may include the involvement of psychiatrists, psychologists, neurologists, and other
healthcare professionals in developing and implementing care plans. It is also important to note
that although depression often co-occurs with apathy in dementia, these two constructs can be
differentiated (Ang et al., 2018; Levy et al., 1998; Marin et al., 1994; Tagariello et al. 2009,
Zhou et al., 2022). Apathy is marked by a noticeable lack of effort and a dependency on others to

96

organize activities. Individuals with apathy show little interest in learning new things or
engaging in new experiences. They exhibit a marked indifference toward their personal problems
and maintain an unchanging emotional affect (Ishizaki & Mimura, 2011). In contrast, depression
is characterized by persistent tearfulness, sadness, feelings of worthlessness and hopelessness
(Fahed & Steffens, 2021; Ishizaki & Mimura, 2011). Additionally, apathy is often related to
neurodegenerative changes, particularly in areas of the brain associated with motivation and
executive function, whereas depression involves a broader range of emotional and psychological
symptoms that can sometimes be alleviated with antidepressants (Lanctot et al., 2023).
With regards to biological characteristics of apathy, our findings revealed that males have
significantly higher odds of experiencing apathy compared to females (OR = 1.42, 95% CI =
1.25 - 1.62, p < 0.0001). Previous research has indicated that males with dementia often exhibit
more severe neuropsychiatric symptoms, including apathy, potentially due to differences in
disease progression (Mouriz-Corbelle et al., 2021; Vilalta-Franch et al., 2013). In addition, the
significant association between severe pain ad increased odds of apathy is consistent with
existing literature (Starkstein et al., 2006). Effective pain management is crucial in dementia care
to improve resident’s outcome. The strong association between use of psychotropic medications
and apathy highlights the importance of regular medication reviews to minimize adverse effects
while managing neuropsychiatric symptoms (Ruthirakuhan et al., 2018). Evidence has shown
that the use of psychotropics in dementia is complicated by increased risks of mortality, falls,
and cardiovascular events (Magierski et al., 2020). Therefore, careful assessment and monitoring
are needed to balance the potential benefits with these risks.
Among the psychological variables, our study demonstrates that moderate to severe
depression, severe aggression and severe cognitive impairment significantly increased the odds

97

of apathy. This aligns well with previous studies (Leontjevas et al., 2018; Robert et al., 2009;
Starkstein et al., 2006), highlighting the influence of cognitive and behavioural health on the
overall well-being of residents with dementia (Tang et al., 2018). This finding further validates
our current understanding of apathy as a distinct symptom requiring proper investigation and
intervention (Steffens et al., 2022; Yan et al., 2023). Furthermore, the association between
insomnia and increased apathy is consistent with previous research emphasizing the need for
addressing sleep issues through careful monitoring using technologies such as ambulatory
actigraphy (Mulin et al., 2011). Social factors, particularly activity preferences, play a notable
role in the health outcomes of residents with dementia. Our study found that a lack of preference
for activities significantly increases the odds of apathy among these residents. This finding
supports existing literature which emphasizes the importance of social engagement and
personalized activities in mitigating apathy (Ellis et al., 2016; Theleritis et al., 2018). Guidance
and better activities of interest can lead to enhanced engagement time among residents with
dementia (Leone et al., 2013). Ensuring that residents have access to meaningful and engaging
activities tailored to their interests can help mitigate apathy and improve their overall quality of
life. The role of care staff in motivating residents experiencing apathy to participate in activities
cannot be over-emphasized (Leone et al., 2013).

98

Music

Talking
Watching TV

Activity preferences

Exercise
Card game
Spritual activites
Reading

Yes

Art and craft

No

Trips
Gardening
Helping others

Walking
0%

25%

50%

75%

100%

Percentages of newly admitted residents with dementia who indicated
preferences for different activities
Figure 8: Activity preferences of the Canadian LTCF newly admitted residents with dementia (N=97,786)
assessed between 2015 and 2019.

99

Music

Gardening
Watching TV
Walking

Activity preferences

Reading
Helping others
Yes

Spiritual activities

No

Card games
Arts and crafts
Exercise
Trips
Talking
0

5

10
15
Prevalence of apathy (%)

20

Figure 9: Prevalence of apathy among newly admitted Canadian LTCF residents with dementia who
indicated preferences for different activities compared to those who did not (N=97,786).

Strengths and limitations
To the best of the authors’ knowledge, this is the first Canadian study that used an apathy
scale derived from the MDS 2.0 dataset to measure apathy and its associated biopsychosocial
100

characteristics in a large sample within LTCF setting. The inclusion of several variables from the
MDS 2.0 provides a robust and multidimensional understanding of the symptoms of apathy in
the context of dementia and enhances the generalizability of the findings to this context.
However, while this cross-sectional study provides valuable insights, it also has limitations,
particularly the inability to establish causality due to the simultaneous measurement of exposures
and outcomes. Longitudinal studies are necessary to confirm the temporal relationships and
causative factors for apathy in dementia. Furthermore, future research should explore the
effectiveness of specific interventions in reducing apathy and improving the quality of life of
people living with dementia in LTCF. It is also of note that given the limitations of the MDS 2.0
dataset, some pertinent biological variables associated with apathy in dementia such as
apolipoprotein epsilon 4 allele (APOE ε4) and PRND 3'UTR polymorphism (D’Onofrio et al.,
2011; Flirski et al., 2012) were not considered in this current study.
Furthermore, the measurement instrument employed in this research solely assessed two
dimensions of apathy: "reduced social interaction" and "withdrawal from activities of interest
(e.g., lack of interest in long-standing activities or socializing with family and friends)" (Morris
et al. 2012, p.2) implying that the behavioral and social domains were adequately assessed while
the emotional and cognitive domains of apathy were not accounted for. However, given the lack
of a comprehensive apathy measurement instrument, the Apathy Index of the MDS 2.0 serves as
a significant initial starting point towards enhancing the recognition of apathy within the
Canadian LTCF.
Implications for practice
The findings of this study have several practical implications for improving dementia
care in LTCF. First, routine screening for apathy should be integrated into the care plans for

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newly admitted residents, especially those with identified correlates such as young age, male sex,
insomnia, functional decline and severe pain. Second, tailored interventions addressing comorbidities of apathy in dementia could significantly reduce apathy symptoms. Third, enhancing
meaningful engagement through personalized activity programs might serve as a crucial strategy
in mitigating apathy and improving overall well-being. Finally, policymakers should consider
these findings when developing healthcare policies and allocating resources for dementia care.
This may involve funding for the development of more engaging care environments, support for
technology-based interventions, and training programs for care staff in early recognition of
apathy.
Conclusion
This study provides valuable insights into the prevalence and biopsychosocial
characteristics of apathy among newly admitted residents with dementia in Canadian LTCF. The
findings emphasize that apathy is more prevalent in younger residents and males, indicating the
need for age-specific and sex-sensitive approaches. Biological characteristics such as severe pain
and the use of psychotropic medications are strongly associated with apathy, suggesting that
effective pain management and careful medication review are crucial. Psychological factors,
particularly depression, can also play a significant role in the development of apathy as
previously understood, underscoring the importance of addressing depressive symptoms to
mitigate apathy. Preferences for social and recreational activities, such as music and exercise, is
inversely associated with apathy, highlighting the value of providing meaningful activities for
residents. The size and regional location of LTCF also influence apathy prevalence, indicating
that facility resources and practices impact resident outcomes.

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Taken together, our study calls for routine screening for apathy, effective pain and
depression management, enhanced activity engagement, and careful medication management to
improve quality of life for residents with dementia. Future longitudinal research is needed to
better understand the causative factors of apathy and evaluate the effectiveness of targeted
interventions. Ultimately, this current study underscores the need for a holistic and personcentered approach to dementia care that incorporates both pharmacological and nonpharmacological interventions. By recognizing the diverse factors influencing apathy, care staff
can better support residents with dementia, enhancing their engagement, well-being, and overall
quality of life.

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Chapter Seven: The Impact of eBook Clubs on Apathy among Long Term Care Residents:
A Pilot Study
This chapter addressed RQ 4 “What impact does eBook club has on apathy among LTCF
residents in rural Northern British Columbia?” and has been submitted for publication in two
formats: a research letter and a full manuscript. The research letter, submitted to the Journal of
the American Medical Directors Association has been published and cited as:
Agboji, A., Freeman, S., Banner, D., Armstrong, J., & Martin-Khan, M. (2024). Value of
eReaders to Mitigate Apathy and Reduce the Digital Divide in Long-Term Care
Settings. Journal of the American Medical Directors Association, 26(1), 105362. Advance online
publication. https://doi.org/10.1016/j.jamda.2024.105362
The full manuscript is under review by Sage Open Aging is included in this chapter to
ensure an in-depth exploration of the findings and their relevance to the overarching research
objectives of this dissertation.
Abstract
Apathy, prevalent among long-term care facilities (LTCF) residents, diminishes
motivation, social interaction, and quality of life. This study explored the impact of eBook clubs
as a non-pharmacological intervention to reduce apathy. A convergent parallel mixed-methods
design was employed with 20 residents from four LTCF participating in a 3-month program.
Apathy was assessed using the Geriatric Depression Scale (GDS-3A) before and after the
intervention, with paired t-tests and Cohen’s d measuring changes. Qualitative insights were
derived from semi-structured interviews and thematic analysis. Apathy prevalence dropped from
55% to 35%, and mean scores decreased significantly (1.6 to 0.9; Cohen’s d = 0.85). Participants
highlighted cognitive, emotional, and social benefits, valuing program flexibility and eReaders
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but noting some preference for physical books. These findings suggest eBook clubs as a scalable,
cost-effective strategy for LTCF. Future studies should evaluate its broader applicability and
explore culturally tailored implementations.
What This Paper Adds:
•

Demonstrates the effectiveness of eBook clubs as a non-pharmacological intervention for
reducing apathy among LTCF residents.

•

Highlights the multidimensional benefits of eBook clubs, including cognitive stimulation,
emotional upliftment, and enhanced social interaction, as key mechanisms for improving
well-being in older adults.

•

Provides evidence of the feasibility and acceptability of eReaders in LTCF, showcasing
their adaptability for residents with diverse needs and preferences.

Applications of Study Findings:
•

Gerontological Practice: eBook clubs offer LTCF a scalable and cost-effective group
activity to promote social connection, reduce isolation, and enhance cognitive
engagement among residents.

•

Policy: Findings support investments in digital literacy programs and infrastructure in
LTCF, including eReaders and staff training, to expand access to stimulating activities.

•

Research: Establishes a foundation for future studies on the long-term effects of digital
group interventions and comparisons with other non-pharmacological therapies to reduce
apathy in aging populations.

Keywords: Nursing home, eReaders, Technology, Mixed methods, Intervention.

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Background
Apathy, characterized by a lack of motivation and diminished interest in daily activities,
is a significant health concern in long-term care facilities (LTCF) residents (Jao et al., 2015,
2019; Volicer, 2013, 2016). It affects the cognitive, behavioral, emotional, or social domains
(Robert et al., 2018), leading to reduced problem-solving interest, withdrawal from activities,
lack of response to motivational cues, or social disengagement (Le Heron et al., 2018; Marin,
1991; Sockeel et al., 2006). Unlike depression, which involves sadness and emotional distress,
apathy is marked by emotional flatness and dependence on others for activity initiation, posing
unique challenges (Marin et al., 1994). Apathy adversely affects residents by reducing healthrelated quality of life, accelerating cognitive decline, and increasing mortality risk, while also
burdening caregivers due to uncooperative behavior (Nijsten et al., 2017, 2019; Jao et al., 2019).
Pharmacological and non-pharmacological interventions aim to address apathy by
encouraging activity participation. Due to trial limitations and side effects of pharmacological
treatments (Agboji et al., 2024; Sepehry et al., 2017; Ruthirakuhan et al., 2018), nonpharmacological approaches are preferred (Zuidema et al., 2009). Music therapy, multisensory
stimulation, pet therapy, and cognitive stimulation effectively reduce apathy in LTCF residents
by providing engaging experiences (Cai et al., 2020; Tan et al., 2022). However, these
interventions require significant resources and training, posing challenges for implementation in
LTCF (Md Hussin et al., 2023). Additionally, therapeutic and leisure activities reduce apathy by
fostering social engagement and reducing loneliness through group interactions (Ellis et al.,
2016; Altintas et al., 2017). Personalizing interventions, such as hobbies or familiar activities,
enhances engagement, while tailored social activities with appropriate materials support
participation despite impairments. Emerging technologies including virtual reality (VR) and

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companion robots such as PARO offer promising solutions for reducing apathy but face
challenges with complexity, side effects, and usability, particularly for residents with cognitive
or physical impairments (Saredakis et al., 2021; Moyle et al., 2013). Adapting these technologies
is essential to meet LTCF needs.
Reading is a cognitively stimulating activity that can mitigate apathy by promoting
mental engagement and emotional well-being. However, challenges such as vision impairment,
frailty, and limited access to books often hinder continued reading in later life. Technologybased solutions, specifically, eReaders, have made literature more accessible, encouraging
frequent reading and reducing social isolation among older adults (Gitlow, 2014; De Oliveira et
al., 2017). Despite these benefits, limited research has explored the impact of group reading
sessions facilitated through digital means (eBook clubs) on self-report apathy among LTCF
residents. This study addresses this gap by pilot testing the effect of eBook clubs on reducing
apathy and integrating quantitative and qualitative findings to better understand the contributing
factors.
Research Design and Methods
Study Design
This study used a convergent parallel mixed-methods design (Creswell & Plano Clark,
2018). Quantitative and qualitative data were collected simultaneously to provide a
comprehensive understanding of the impact of eBook clubs on apathy among LTCF residents.
This design enabled the integration of both objective measures of apathy and subjective
experiences of participants, ensuring complementary insights. Following the principles of
convergent parallel design, the quantitative and qualitative findings were integrated at the
interpretation stage. The quantitative reduction in apathy scores was cross-referenced with

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themes from the qualitative data to provide a deeper understanding of key factors contributed to
the observed improvements. A joint display table was used to present the integration of both data
strands (Fetters, 2020).
Setting and Participants
Participants were recruited from four LTCF located in rural areas. Inclusion criteria
required participants to (1) have an interest in reading, (2) be able to read and speak English, (3)
have the ability or willingness to use digital technology, and (4) provide informed consent.
Residents with severe cognitive or physical impairments that precluded group participation were
excluded. A purposive sampling strategy was used to recruit participants. Recruitment efforts
included information sessions at each LTCF, posters displayed in common areas, and support
from staff (e.g., recreation therapists) in identifying interested residents. Participants were
provided with a copy of the information letter two weeks prior to enrollment and were assessed
for decision-making capacity using the University of California, San Diego Brief Assessment of
Capacity to Consent (UBACC) (Jeste et al., 2007).
Study procedure
The eBook club program was implemented over 12 weeks in each site. Each participant
received access to eReaders (KobolibraH20) with a minimum of 20 pre-selected books tailored
to their interests, based on preferences identified during the first interview. Books were freely
accessible through the Rakuten Kobo platform (www.kobo.com), and participants were
encouraged to request additional books throughout the program, with a waiting period of 1 to 2
weeks for new titles. The intervention consisted of weekly group reading sessions facilitated by
trained staff and involved 4–8 participants per group. Each session lasted 45–75 minutes,
depending on participant preferences, and included reading aloud and group discussions about

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preselected books. This design aimed to foster social engagement, cognitive stimulation, and
emotional connection among participants. Independent reading was included as a supplementary
activity, providing participants with eReaders and access to a curated library of books. While
participants were encouraged to explore the eReaders between sessions, the primary focus
remained on group interactions during the weekly meetings. For participants unfamiliar with
digital devices, a hands-on tutorial was provided during the orientation session.
Quantitative Data Collection and Analysis
Quantitative data were collected using the Geriatric Depression Scale (GDS-3A), which
includes three apathy-related items. The GDS-3A has been employed in multiple studies (Adam,
2001; Bertens et al., 2017; Grool et al., 2014; Ligthart et al., 2012). The items included the
following questions: (1) "Have you dropped many of your activities and interests?" (2) "Do you
prefer to stay in your room rather than going out and doing new things?" and (3) "Do you feel
full of energy?" For questions 1 and 2, a score of 1 was assigned for a "Yes" response, while for
question 3, a score of 0 was assigned for a "Yes" response. The validity of the GDS-3A
(Geriatric Depression Scale-3) as a measure of apathy has been explored in two populations of
older adults including those with and without depression.
According to Bertens et al. (2017), the GDS-3A shows varying sensitivity and specificity
depending on depression status. Among older adults with depression, it had 32.8% sensitivity
and 92.6% specificity, indicating high accuracy in ruling out apathy. For those without
depression, sensitivity was 29.3%, with specificity at 88.5%. These results suggest the GDS-3 is
more effective at confirming the absence of apathy than detecting it, particularly in individuals
with co-existing depression. Despite its limitations, the GDS-3A remains a valuable tool for
initial screening purposes. The GDS-3A includes key components relevant to apathy detection,

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making it useful for prompting further clinical investigation (Szymkowicz et al., 2022). Its threeitem structure offers psychometric and evaluative advantages over single-item approaches
(Szymkowicz et al., 2022). The selection of the GDS-3A was guided by pragmatic and
contextual considerations specific to the study setting. Firstly, our research was conducted in
long-term care environments where participants exhibited varying degrees of cognitive
functioning and fluctuating levels of engagement. In these real-world contexts, the GDS-3A
provided a brief, easy-to-administer, and low-burden screening tool suitable for use by
researchers without requiring extensive training or certification. Secondly, while we
acknowledge that the GDS-3A is not a diagnostic instrument for apathy, it was not used for
diagnostic purposes in our study. Instead, it functioned as a proxy measure for observable
behavioral disengagement, consistent with its use in prior studies (Adam, 2001; Bertens et al.,
2017; Grool et al., 2014; Ligthart et al., 2012; Maruta et al., 2021). Lastly, we were mindful of
the GDS-3A’s psychometric limitations and addressed this by incorporating a mixed-methods
approach. The qualitative component of the study provided a richer, context-sensitive
understanding of participant engagement, emotional responsiveness, and perceived changes
related to apathy. This methodological complementarity helped to enhance the depth and
interpretive validity of our findings and provided a more nuanced picture than quantitative
screening alone could achieve.
In this study, a cut-off score of ≥2 indicated apathy (Bertens et al., 2017). To maintain
consistency across sites, the first author administered the GDS-3A pre- and post-intervention,
measuring apathy at baseline and after the program. Descriptive and inferential statistics were
used to evaluate the eBook club's impact on self-reported apathy. Demographic data, such as age
and gender, were analyzed using Excel for descriptive statistics, providing an overview of the

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participant sample. Paired t-tests were conducted in SPSS (IBM Corp., 2023) to assess the
program’s impact. The analysis emphasized Cohen's d as a measure of effect size over p-values,
offering a clearer interpretation of the intervention’s impact, with Cohen’s d values indicating the
strength of the observed changes (Cohen, 1988). For analysis, apathy scores were categorized
into a binary variable: scores of 2 or higher indicated "apathy," while scores below 2 were
classified as "no apathy."
Qualitative Data Collection and Analysis
Qualitative data were collected through semi-structured interviews conducted at
enrollment and after the program. The first interview focused on reading habits and expectations,
while the second explored participants’ experiences with the eBook club and eReaders.
Interviews were audio-recorded, transcribed verbatim, and analyzed using NVivo 12 software
(QSR, 2020). Thematic analysis with open coding identified key themes and patterns, ensuring
accurate representation of participants’ experiences (Braun & Clarke, 2006; Bazeley & Jackson,
2013). Ethical approval was obtained via the Harmonized Ethics Review and Institutional
Research Ethics Board. Informed consent was secured at enrollment and reconfirmed before
each session.
Reflexivity
Reflexivity is vital in mixed-methods research to recognize how researchers' backgrounds
and assumptions can influence the study process (Finlay, 2002). In this study, the first author’s
involvement in recruitment, data collection, and analysis posed a potential for bias in data
interpretation. To address this, the research team engaged in ongoing self-reflection, remaining
open to unexpected findings, whether positive or negative, and critically examining their
expectations about the intervention’s effectiveness. Additionally, the team acknowledged that

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pre-existing relationships between staff and residents might affect participants' responses. To
mitigate this, interviews were conducted in neutral settings by the first and second authors, who
were not involved in the residents’ care.
Credibility and Reliability
To ensure credibility and reliability, we employed triangulation by using multiple data
sources including pre- and post-apathy scores and semi-structured interviews to cross-validate
findings, enhancing trustworthiness (Creswell & Plano Clark, 2018). Transcripts were
independently coded by the first and second authors using NVivo 12, with discrepancies resolved
through discussion and consensus with the third author. Regular peer debriefing sessions were
conducted throughout the coding process, allowing the research team to challenge assumptions
and explore alternative interpretations, reducing the risk of confirmation bias (Creswell & Poth,
2018).
Results
Sample characteristics
Table 6 shows the characteristics of the study participants. A total of 20 residents
participated fully in the program. The mean age of participants was 76.4 years (SD = 7.2) with a
range between 51 and 98 years. The majority identified as woman (75%), half of the participants
(50%) completed high school, College or University degree, and over half were widowed (60%).
Less than half (40%) reported that they had never used technology before but were excited to try
out a technology for reading. Many participants described themselves as avid readers, engaging
with a variety of texts for a considerable portion of each day and had experienced a change in
their reading habits since admission into LTCF (25% read less and 30% read more). Fictional

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books were of interest to most of the participants (80%) and none of the participants had a
dementia diagnosis.
Impact of participation in eBook clubs on self reported apathy
Participants reported significant social and emotional benefits from group reading
sessions. Quantitative analysis revealed a significant reduction in apathy scores from baseline to
post-intervention. Pre-intervention mean score: 1.6 (SD = 0.99); post-intervention mean score:
0.9 (SD = 0.71), mean difference: 0.7 (95% CI, 0.23–1.17). A paired t-test indicated that the
reduction in apathy scores was statistically significant (t(19) = 3.42, p < 0.01). The effect size,
measured using Cohen’s d, was 0.85, indicating a large effect. Additionally, apathy prevalence
decreased from 55% at baseline to 35% post-intervention (Figure 10). All participants attended at
least 80% of the scheduled sessions, with an average attendance rate of 87% across the study
sites.
Key Factors Contributing to the Reduction in Apathy
Table 7 shows the joint display table of key factors contributing to the observed reduction
in apathy among participants. Four major themes emerged from the qualitative data: cognitive
stimulation, emotional well-being, social interaction, and program flexibility. These themes
provide insight into the mechanisms underlying the reduction in apathy observed in the
quantitative data.
Cognitive Stimulation
Participants described the eBook club as mentally engaging, with some noting that
reading kept their minds active and provided something to look forward to. This cognitive
engagement aligns with the reduction in apathy scores, as it helped participants feel motivated
and mentally stimulated. One participant noted:

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Reading keeps my brain going; it’s like exercise for my mind. I look forward to each
session, not just for the books but for the discussions. Hearing others’ thoughts and sharing my
own makes me feel connected and part of something meaningful. It’s a highlight of my week,
sparking curiosity and giving me a sense of accomplishment [Participant #6, 72 years]. The
eReaders allowed participants to explore new topics, fostering curiosity and sustained mental
engagement. Participants also reported frequent independent use of eReaders between sessions,
indicating high levels of engagement with the intervention. The option to request additional
books during the program further enhanced motivation and satisfaction.
Emotional Well-being
Participants reported that reading contributed to positive emotions and mood
improvement. Engaging with new stories and ideas provided emotional relief, offering a sense of
purpose and meaning. One individual stated:
Even on days I felt low, reading lifted my spirits. It gave me a sense of purpose and
something positive to look forward to. The stories distracted me from negative thoughts and
brought moments of joy, making my day feel brighter [Participant #4, 57 years]. Another
participant reflected that engaging with new books helped them reconnect with positive
emotions, contributing to improved mood. The participant commented, “It makes me laugh; even
if I’m feeling sad, I can pick up a book, and everything feels lighter. The stories have a way of
lifting my mood and bringing joy, turning a tough day into something much brighter”
[Participant #2, 79 years].
Social Interaction
Group discussions provided opportunities for meaningful connections with others,
promoting emotional support and reducing feelings of loneliness. Participants expressed that

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talking about books with others made them feel part of a community, which further contributed
to their emotional well-being and engagement with the program. The group sessions facilitated
meaningful connections among participants. One participant shared, “I enjoyed talking about the
books with others, it gave me a sense of connection and made me feel less lonely’ [Participant
#8, 90 years]. Sharing our thoughts and hearing different perspectives brought us closer and
created a sense of community. One participant commented “There is a social aspect to it. It
added to my social interaction with people. I like that” [Participant #2, 57 years]. Another
participant stated, “I was able to talk to others about the books I read, which made the experience
more engaging and enjoyable. It gave me a chance to connect with people and share ideas,
making reading feel like a shared journey” [Participant #11, 81 years].
Program Flexibility
Participants emphasized the importance of program flexibility in enhancing their
engagement with the eBook club. Many participants appreciated the opportunity to read
independently at their own pace, in addition to participating in weekly group sessions. One
participant noted, "I liked that I could read whenever I wanted, without having to follow a strict
schedule" [Participant #1, 84 years]. This flexibility allowed residents to integrate reading into
their daily routines and provided them with a sense of autonomy. The ability to request new
books throughout the program further motivated participants, as it ensured the availability of
material aligned with their personal interests. For example, one participant remarked, “I was able
to request books I really wanted to read, which made the experience much more enjoyable.
Having a choice in what I read made it feel personalized and kept me excited about each session”
[Participant #10, 75 years]. Participants also found that pre-loaded eReaders made it easier to

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access literature without requiring frequent technical support, further enhancing their reading
experience.
Discussion
To the best of our knowledge, this is the first study to examine the impact of eBook clubs
on reducing apathy among LTCF residents. Findings indicate that group reading sessions
effectively reduce apathy by combining cognitive stimulation with social interaction. Unlike
interventions focused solely on individual engagement, the structured group format fosters
shared experiences and emotional connections, addressing key aspects of apathy such as
withdrawal and lack of motivation (Marin, 1991; Starkstein, 2000). While independent reading
was available, qualitative feedback and observed outcomes highlight group dynamics as the
primary driver of the intervention's success. This is consistent with prior studies suggesting that
group activities can reduce apathy in older adults (Theleritis et al., 2017; Zhu et al., 2017).
Our findings further demonstrate that eBook clubs significantly reduce self-reported
apathy and enhance emotional and social well-being among LTCF residents. The reduction in
apathy suggests that the interactive nature of eReaders, combined with stimulating content,
actively contributes to improved health outcomes. Apathy, prevalent in LTCF, is associated with
poorer cognitive and functional outcomes (Marin, 1991). By providing engaging activities,
eBook clubs mitigate these risks, serving as a proactive tool for managing apathy (Oh et al.,
2018; Zhu et al., 2017). Additionally, the emotional and social benefits of reading in LTCF are
substantial. While traditionally seen as a solitary activity, eBook clubs foster social interaction, a
critical component of emotional health being (O’Neill & Dogra, 2016). Group reading sessions
encourage discussions and connections, reducing loneliness and isolation (Weziak-Bialowolska
et al., 2013).
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This study highlights the feasibility of eBook clubs as a practical non-pharmacological
intervention for addressing apathy in LTCF residents. While music therapy reduces apathy and
improves mood (Tang et al., 2018), its need for specialized training and instruments limits
scalability (Cohen-Mansfield, 2018). Similarly, pet-assisted therapy provides emotional and
social benefits (Bernabei et al., 2013), but logistical challenges such as animal care, allergies,
and safety concerns restrict its widespread use (Zisselman et al., 1996). In contrast, eBook clubs
are cost-effective, requiring only eReaders and minimal staff training, and are highly scalable.
They uniquely integrate cognitive stimulation and social interaction, effectively addressing
multiple dimensions of apathy while fostering emotional well-being and social connections,
making them a more sustainable solution for LTCF.
Despite these potential benefits, the implementation of eReaders must be handled with
sensitivity to the unique emotional and psychological needs of users. Some individuals may
experience frustration or anxiety when learning new technologies, which could counteract the
potential emotional benefits. Therefore, proper training and support are essential to ensure that
the transition to digital reading is as smooth as possible (Mitzner et al., 2010). These may include
individualized instruction (Charness & Boot, 2009), peer support (Lee & Maher, 2021), and
hands-on practice (Czaja & Sharit, 2013). Moreover, care must be taken to select appropriate
reading materials that are aligned with the interests and emotional states of the readers. Overly
complex or emotionally distressing content could potentially exacerbate feelings of frustration or
sadness.
Many participants had limited prior exposure to digital technology, contributing to
difficulties in using the devices. This aligns with Andrews et al. (2019), who found that
technological literacy significantly impacts older adults’ ability to use digital devices.

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Addressing these challenges requires targeted training tailored to their cognitive and physical
needs (Wu et al., 2015). Additionally, issues such as eReader weight and navigation difficulties
highlight the need for user-friendly designs suited for older adults (Kebede et al., 2022).
Participants also expressed mixed preferences for digital and physical books, consistent with Lu
et al. (2023), who noted older adults’ preference for the tactile experience of physical books.
These findings underscore the importance of offering both formats to accommodate preferences
and ensure inclusivity in eBook club programs.
The program's implementation also revealed critical logistical considerations, such as the
need for reliable Wi-Fi infrastructure when downloading books to eReaders or any digital
reading devices and consistent scheduling to avoid program interruptions. These aspects are
crucial for the seamless integration of technology-based interventions in LTCF (Kebede et al.,
2022; Sen et al., 2022). Furthermore, the feedback from residents about the timing and
accessibility of reading materials indicates the importance of aligning program logistics with
residents' daily routines and seasonal activities to maximize participation and engagement
(Smith, 1993).
Strengths and limitations of the study
This study addresses a critical gap in geriatric care literature by examining how
technology and reading intersect to mitigate apathy in LTCF residents. However, several
limitations should be noted. The small sample size of 20 participants limits the generalizability
of findings, as it may not capture the diverse experiences of a larger, more varied population.
Additionally, the absence of a control group or alternative conditions (e.g., independent reading)
makes it difficult to isolate the specific effects of group interaction. Future studies should adopt
comparative designs to better distinguish the contributions of group and individual reading.

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The reliance on self-reported data collected using the GDS-3A to assess engagement and
mood is another limitation. Incorporating standardized apathy measures in future research would
enhance the robustness of findings. The study also did not explore how device features, such as
screen glare or battery life, influence user experience, which could impact satisfaction and
effectiveness. Furthermore, the role of staff and the structure of reading activities were not fully
examined, despite their potential influence on outcomes. Lastly, the short follow-up period
precluded an assessment of the long-term benefits of eBook clubs, highlighting the need for
longer-term studies to evaluate their sustained impact on residents’ well-being.
Implications for practice
To boost participation in eBook clubs among LTCF residents, technology should be
tailored to their needs with simplified interfaces, larger icons, high-contrast colors, and
lightweight, easy-to-grip eReaders. Features such as text-to-speech and adjustable text sizes
enhance accessibility (Bernard et al., 2001). Scheduling sessions strategically and offering both
eReaders and physical books cater to diverse preferences, increasing satisfaction and fostering
social interaction through hybrid formats. Apathy, linked to reduced neural connectivity in
reward and motivation centers (Jang et al., 2021), may be counteracted by engaging stories and
group discussions that stimulate these networks. Integrating eBook clubs into LTCF routines
provides residents with meaningful engagement, improving quality of life.
Conclusion
The results demonstrate the potential of eBook clubs to reduce apathy among LTCF
residents. By promoting social interaction and emotional engagement, they offer a scalable and
cost-effective alternative to pharmacological treatments. eBook clubs also address accessibility
challenges of traditional books through eReaders with adjustable fonts and backlighting,

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alleviating visual strain in older adults. Additionally, eReaders provide access to extensive
literary content, overcoming physical library limitations and enhancing cognitive engagement.
Future research should explore the long-term effects of eBook clubs and investigate their
integration with other therapeutic activities to maximize their impact on residents’ well-being.
Characteristics
Age (years)

% (n)
50-60
61-70
71-80
81-90
90+

15 (3)
10 (2)
30 (6)
35 (7)
10 (2)

Man
Woman
Other

25 (5)
75 (15)
0

Married
Never married
Widowed/Separated/Divorced

15 (3)
15 (3)
70 (14)

College/University
High School
Grade 7-9
Grade 1<6

20 (4)
30 (6)
45 (9)
5 (1)

No change
Read less
Read more

45 (9)
25 (5)
30 (6)

Below 5 years
Over 5 years

15 (3)
85 (17)

Everyday
Once a week

85 (17)
15 (3)

No
Yes

25 (5)
75 (15)

Gender

Marital status

Education

Change in Reading habits

Years spent reading
No of times reading per week
Prior use of technology
Table 6: Sample Characteristics

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Quantitative Findings

Qualitative Themes

Interpretation

Apathy scores decreased
from 1.6 (SD = 0.99) to 0.9
(SD = 0.71). Cohen’s d =
0.85 indicates a large effect.

Cognitive Stimulation:
Participants found the reading
material mentally engaging.
Quote: “Reading keeps my
brain going.”

The reduction in apathy
reflects how mental
engagement fostered
motivation and provided
participants with meaningful
activity.

The proportion of participants
classified as apathetic
decreased from 55% to 35%
after the intervention.

Emotional Well-being:
Reading helped participants
feel emotionally uplifted.
Quote: “Even on hard days,
reading gave me something to
look forward to.”

Participants reported
improved emotional wellbeing, explaining the
observed decline in apathy.

87% average attendance rate
across weekly sessions
indicates high engagement.

Social Interaction: Group
discussions fostered a sense
of belonging. Quote: “Talking
about books made me feel
connected with others.”

Social interaction through
group reading sessions
contributed to reduced
isolation, enhancing
emotional health and
engagement.

Participants reported frequent
independent reading between
sessions.

Program Flexibility:
Participants appreciated the
ability to read independently
at their own pace. Quote: “I
liked being able to read
whenever I wanted.”

The flexibility of the
eReaders encouraged
independent participation,
further reinforcing cognitive
and emotional engagement.

Table 7: Key factors contributing to apathy reduction

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Percentages participants with self reported apathy versus those who did not self
report apathy before and after the program (N=20)

100

75

65
55

45

50

35

25

0
Pre-program

Post Program
Self reported apathy

Did not self report apathy

Figure 10: Prevalence of apathy before and after the program

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Chapter Eight: Impact of eBook Club Implementation on Apathy Among Community
Dwelling Older Adults in Rural Canada: A Mixed Method Study
This chapter addressed RQ 5 “What impact (s) does eBook club has on apathy among
community dwellers in rural Northern British Columbia?” and has been submitted to the Journal
of Applied Gerontology for publication. It is currently under review.
Abstract
Background: Apathy is prevalent among older adults, especially in rural areas, where
social isolation and limited resources can intensify disengagement from meaningful activities.
This study assessed the impact of eBook club participation in reducing apathy among older
adults in rural communities and identified mitigation strategies to support successful program
implementation.
Method: This mixed-method study collected quantitative data using the Apathy Subscale
of the Global Depression Scale (GDS-3A) and qualitative insights from semi-structured
interviews guided by Socioemotional Selectivity Theory (SST). The eBook club involved both
independent and group reading sessions, with each participant provided with an eReader
preloaded with books aligned to their preferences.
Results: Twenty-eight older adults (60-86 years) from three rural communities
participated, with a majority being women (89%) and avid readers (100%). Half of participants
had a high school education level. The findings revealed use of the eReaders and participation in
eBook clubs significantly reduced apathy among participants, decreasing from 54% at baseline
to 11% post-program. Participants noted emotional satisfaction, convenience, and renewed
interest in reading with the use of eReaders, alongside improved social interaction through group

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reading sessions. Participants described creative mitigation strategies employed to adapt and use
the eReader technology sustainably.
Conclusion: Participation in eBook clubs has the potential to reduce apathy by promoting
emotionally meaningful activities, close-knit relationships and adaptation to age related decline.
Thus, enhance the overall well-being of community dwelling older adults.
Implications for Practice: Implementing eBook club programs in rural communities can
mitigate apathy in older adults. Ensuring robust technical support and addressing physical
accessibility needs will further enhance the success and inclusivity of such programs.
Introduction
In Canada, individuals aged 65 years and older currently represent approximately 18.9%
of the population, a figure that has been steadily rising due to the aging baby boomer generation
and increased life expectancy (Statistics Canada, 2023). This trend is expected to continue, with
projections suggesting that by 2073, the proportion of older adults could range from 21.9% to
32.3%, depending on various growth scenarios (Statistics Canada, 2023). In British Columbia
(BC), the growth in the older adults’ population mirrors national trends. In 2022, older adults
aged 65 years and older made up 19.9% of the province’s population, exceeding one million
residents. This aging trend is projected to accelerate, with BC’s overall population expected to
reach 7.9 million by 2046, a 49% increase from 2022 (BC Stats, 2024). In Northern BC, the
demographic is also growing steadily. For instance, in the Cariboo region, individuals aged 65
years and older accounted for 16.5% of the population in 2021, with significant growth expected
through 2046 (BC Stats, 2024). These trends underscore the increasing need for innovative
strategies to support the aging population, particularly, in rural communities.

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Apathy is an increasingly recognized health issue among older adults, both with and
without cognitive impairments (Brodaty et al., 2012; Lanctot et al., 2017; Onyike et al., 2007).
Evidence suggests that apathy is not a normal part of aging but rather represents a complex
neuropsychiatric geriatric syndrome that requires thorough assessment and care (Agboji et al.,
2024; Lanctôt et al., 2023). Apathy is primarily characterized by a significant decline in
motivation or interest in goal directed activities, which can manifest in various ways, including
diminished initiation, reduced emotional expression, and a lack of goal-directed behavior (Marin,
1991; Robert et al., 2012). Thus, individuals with apathy often show a lack of initiative, do not
pursue activities they enjoy, and may seem emotionally flat or indifferent (Marin, 1990). This
can significantly impair their daily functioning, as they may neglect basic self-care tasks, lose
interest in social interactions, and become increasingly isolated (Lanctot et al., 2017; Marin,
1991; Robert et al., 2012). This condition, therefore, poses serious implications for the wellbeing of older adults, particularly those in rural areas where access to social and recreational
activities may be limited.
Engagement in intellectual, social, and leisure activities has been shown to reduce
cognitive decline and improve well-being of older adults (Almeida-Meza et al., 2021; FoubertSamier et al., 2014). For instance, Wilson et al. (2012) found that frequent participation in
cognitively stimulating activities, including reading, was associated with a reduced risk of
Alzheimer’s dementia in older adults. Social activities and networks also have a positive impact
on cognitive functioning, as demonstrated by Kelly et al. (2017), underscoring the potential value
of social interaction on cognitive health. Traditional social outlets, such as book clubs, offer both
intellectual engagement and social connection, helping older adults stay mentally active and
emotionally engaged (Toepoel, 2013).

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As technology becomes more integrated into daily life (Freeman, 2020), digital platforms
such as eBook clubs present new opportunities for engagement. eBook clubs offer unique
benefits, including (a) accessibility: eReaders provide convenient access to a broad range of
reading materials, with adaptable settings for visual or physical limitations (Katz et al., 2012; Lu
et al., 2023); (b) cognitive stimulation: reading and discussing books in a group promotes mental
engagement, which may help maintain cognitive function (Chang et al., 2021; Oh et al., 2018);
and (c) social interaction: regular meetings create opportunities for social connection and
discussion, combating isolation often linked to apathy (Weziak-Bialowolska et al., 2013).
Despite these advantages, research on the use of eReaders and the role of eBook clubs in
reducing apathy among older adults remain limited. While studies have shown that reading can
enhance cognitive function and emotional well-being (Bavishi et al., 2016), the potential for
eBook clubs to extend these benefits has not been fully explored. For rural-dwelling older adults,
where social and intellectual engagement opportunities are often limited, addressing apathy is a
critical concern for caregivers, healthcare professionals, and policymakers (Agboji et al., 2024).
This study aims to bridge these gaps by investigating how participation in eBook clubs can
reduce apathy among older adults in rural community settings. To achieve this aim, the study
addresses the following research questions: (a) What is the impact of eBook club participation on
apathy among rural, community-dwelling older adults? and (b) What are the challenges and
solutions for successfully implementing eBook clubs in rural communities?
Methodology
Theoretical framework
This study is grounded in Socioemotional Selectivity Theory (SST) (Carstensen et al.,
1999), which provides a framework for understanding the behavioral and emotional priorities of
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older adults as they age. SST posits that with an increased awareness of life’s finitude,
individuals shift their focus from future-oriented goals, such as knowledge acquisition or broad
social exploration, toward emotionally meaningful activities that enhance well-being. This shift
encourages older adults to prioritize experiences and relationships that bring immediate
emotional satisfaction and support psychological health (Carstensen, 2006). In the context of
aging, apathy can arise when individuals lack engagement in activities that fulfill these emotional
needs (Marin, 1991). SST therefore offers a valuable lens for understanding and designing
interventions aimed at reducing apathy in older adults. By focusing on activities that foster
emotional engagement and social connection such as eBook clubs, older adults might have the
natural tendency to seek purpose and satisfaction in daily life.
Sample/settings
This study was conducted over six months (March to September 2023) in three rural
communities in Northern British Columbia (BC), Canada. Northern BC is a vast, sparsely
populated region characterized by rugged landscapes, a resource-based economy, and diverse
communities (BC Stats, 2024; Kornelsen et al., 2021). Covering approximately 70% of BC’s
land area but home to less than 10% of the provincial population, the region exemplifies the low
population density typical of rural areas (BC Stats, 2024). One of the primary challenges facing
rural Northern BC is limited access to healthcare services; geographic isolation often necessitates
long-distance travel for medical care, leading to delays in treatment and potential health
complications (Freeman et al., 2022). Participants were recruited using purposive sampling
through social media, community bulletin boards, and word of mouth. Eligibility criteria
included an interest in reading, proficiency in reading and speaking English, willingness or
ability to use digital technology, and the capacity to provide informed consent. Ethical approval

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for the study was granted through the Harmonized Ethics Review process in collaboration with
the Institutional Research Ethics Board. Capacity to consent was determined using the University
of California, San Diego Brief Assessment of Capacity to Consent (UBACC) tool (Jeste et al.,
2007). This tool was administered by the first author to ensure participants understood the
research protocol, appreciated the risks and benefits, and could provide informed consent. The
assessment was repeated before each data collection point to confirm ongoing consent and
understanding, ensuring inclusivity for participants with varying cognitive abilities.
Study Design
This study used a quasi-experimental mixed-methods design, combining quantitative and
qualitative data to comprehensively understand participants' experiences with the eBook club
program. Data collection occurred at two time points: baseline (week 0) and post-intervention
(week 6). These time points were chosen to capture changes in apathy levels throughout the
program. Quantitative data was collected through a self-report apathy questionnaire, while
qualitative data was gathered via two semi-structured interviews. The first interview, conducted
after informed consent was obtained, collected demographic information, reading preferences,
and initial thoughts on using eReaders, establishing a baseline understanding of participants'
backgrounds and expectations. The second interview, conducted post-program, focused on
participants' reflections on their experiences with the eBook club and their perspectives on the
use of eReaders. The interviews provided valuable qualitative insights into participants'
emotional responses, challenges, and suggestions for improving program implementation. The
open-ended, semi-structured format also allowed participants to express their thoughts freely
while ensuring key topics were covered and additional points of interest could be explored.

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For quantitative data, analysis was performed using the Statistical Package for the Social
Sciences (SPSS version 29) (IBM Corp., 2022). Descriptive statistics identified the proportions
of participants with and without apathy pre- and post-intervention. A McNemar’s test was
conducted to assess the statistical significance of changes in apathy following the program.
Thematic analysis of the interview transcripts using NVivo 12 software (QSR, 2018) was
conducted by the first and second authors, with Socioemotional Selectivity Theory (SST)
guiding framework the interpretation of findings. Conflicts were resolved by the third author.
Thematic analysis allows researchers to organize and interpret data in a way that reveals
underlying meanings and insights about participants’ experiences, perceptions, and behaviors
(Braun & Clarke, 2006).
Apathy measures
A self-report questionnaire consisting of three items from the Global Depression Scale
(GDS-15), known as the Apathy Subscale of the GDS or GDS-3A, was used to measure apathy
before and after the program. The three items used to assess apathy included the following
questions: "Have you dropped many of your activities and interests?"; "Do you prefer to stay in
your room rather than going out and doing new things?"; and "Do you feel full of energy?". The
scoring method for these questions was as follows: for questions 1 and 2, a "Yes" response was
given a score of 1, while for question 3, a "No" response was given a score of 1. This scoring
system was designed to capture key elements of apathy, such as loss of interest and lack of
motivation to engage in new activities. The GDS-3A subscale has been widely used in research
(Adam, 2001; Bertens et al., 2017; Grool et al., 2014; Ligthart et al., 2012). The validity of the
GDS-3A as a measure of apathy has been established in populations of older adults with and
without depression (Bertens et al., 2017).

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Although the three items in the GDS-3A do not capture all dimensions of apathy, they are
valuable for screening purposes (Bertens et al., 2017). In addition, the three items provide
psychometric benefits, achieving a balance between brevity and reliable screening results, which
is more effective than a single-item approach (Szymkowicz et al., 2022). A cut-off score of ≥2
indicates the presence of apathy, a threshold based on prior research linking such scores to
clinically significant apathy symptoms in older adults (Bertens et al., 2017). For analytical
purposes, apathy scores were converted into a binary variable, where scores of 2 or above
signified "apathy" and scores below 2 represented "no apathy."
Overview of the intervention
Before the start of the eBook club program, participants were provided Kobo eReaders
(Kobo Libra H20) and free access to the Rakuten Kobo eReader platform (www.kobo.com),
which included a selection of free eBooks. A tutorial session was held to guide participants on
loading eBooks onto their devices and navigating the eReader features. The intervention
consisted of two main components: independent reading sessions and facilitated group
discussions. Independent reading was designed to provide cognitive engagement and emotional
satisfaction, while group discussions aimed to enhance social interaction and support. Group
reading sessions, facilitated by the first author, were held once a week for six weeks, with each
session lasting 45 to 60 minutes. Attendance ranged from four to eight participants per session,
providing a supportive environment for engaged discussion and shared reading experiences.
Results
Sample characteristics
Table 8 displays the sample characteristics of the 28 older adults who participated in this
study. The age range of participants varied, with the most represented age groups being 60 to 80

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years (86%). The majority were women (89%). Many participants had a “College/University”
(46%) or “High School” (50%) education. A significant proportion were married (57%) and
three participants were formally diagnosed with dementia (11%). With regards to reading habits
and preferences of the participants, the majority reported to be regular readers (71%). The most
preferred book genre among the participants was fiction, with a total of 75% of participants
indicating a preference for some form of fictional literature, including genres such as travel
adventure, romance, mystery, and other combinations of fiction. About a third of the participants
used digital devices such as phones, tablets, or eReaders for reading, while one in three (32%)
did not have prior experience using eReaders or other reading technology.

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Characteristics
Age

Participants, % (n)
60-70
71-80
81-90

43 (12)
43 (12)
14 (4)

Man
Woman

11 (3)
89 (25)

Married
Never married
Widowed/Separated/Divorced

57 (16)
4 (1)
39 (11)

College/University
High School (Grade 10-12)
Grade 7-9
Change in reading habits over time
No change
Read less
Read more
Years spent reading
Below 5 years
Over 5 years
No of times reading per week
Everyday
Once a week
Three times a week
Occasionally
Dementia Diagnosis
Yes
No
Prior use of technology
No
Yes
Favorite Genre
Fiction
Non-fiction
Both

46 (13)
50 (14)
4 (1)

Gender
Marital status

Education

18 (5)
29 (8)
53 (15)
0 (0)
100 (28)
71 (20)
21 (6)
4 (1)
4 (1)
11 (3)
89 (25)
32 (9)
68 (19)
21 (6)
75 (21)
4 (1)

Table 8:Characteristics of study participants (N=28)

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Impact of participation in eBook clubs on apathy
Figure 11 shows the number of participants with self reported apathy before and after the
program while Figure 12 is a joint display of the qualitative themes that explain why and how the
observed reduction in apathy occurred. The reduction in apathy was treated as a dependent
variable, analyzed using McNemar’s test to assess changes from baseline to post-intervention
(Fagerland et al., 2013), with additional exploration of qualitative themes as mediating factors
influencing the observed outcomes. Prior to the intervention, 54% of participants (n = 15)
reported apathy, while 46.4% (n = 13) did not meet the GDS-3A threshold for apathy and were
subsequently categorized as "no apathy." Following the intervention, only 11% of participants (n
= 3) continued to report in the "apathy" category, with 89% (n = 25) reported the "no apathy"
group. No new participants reported apathy at follow-up. Therefore, this shift suggests a notable
reduction in apathy post-intervention. The McNemar’s test result showed a highly significant
effect, with an exact p-value of < .0001 (Figure 12), indicating that the intervention was effective
in reducing apathy levels among participants.

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Figure 11: Percentages of participants with self reported apathy vs no apathy pre and post intervention.

Three themes emerged from participants’ perspectives, each broken into subthemes that
offered a deeper understanding of the observed reduction in apathy among those who initially
self-reported apathy: (1) the positivity effect, which highlighted a shift toward emotionally
fulfilling activities; (2) selective pruning of social networks, reflecting participants’ focus on
cultivating meaningful social connections; and (3) adaptation to physical and cognitive decline,
demonstrating how participants utilized the eBook club to accommodate and actively engage
with the challenges of aging (Figure 12).

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Positivity Effect: Focus on emotionally fulfilling activities
Participants emphasized the focus on positive and emotionally meaningful experiences
they experienced during the eBook club. Participants reported that reading provided emotional
satisfaction and moments of joy, helping them shift attention from negative emotions and reduce
feelings of apathy. The group reading sessions created opportunities to share uplifting stories and
emotionally fulfilling discussions, reinforcing the positivity effect. As one participant stated,
Honestly, reading these books just brought me this real sense of relief and joy. They
became kind of like a little escape for me, you know? A way to set my worries aside and just get
lost in something light and positive. It was like each page gave me this small break from the
usual stresses, letting me dive into a world that felt safe and, honestly, just really uplifting. And it
wasn't only about the stories themselves. It was more about this comforting feeling they gave me
a kind of warmth and reassurance that lifted my mood and just made everything feel a bit better,
even if only for a little while [Participant #3, 71 years]. Another participant remarked,
When I read, I feel truly alive again. Each story stirs memories of better times, moments
I might have forgotten in the daily rush. It’s more than just entertainment, it’s a reminder of
warmth, hope, and the person I am beneath all the noise. It’s exactly what I needed. [Participant
#5, 69 years].
Selective Pruning of Social Networks: Focus on meaningful connections
Participants placed high value on selective social interactions through the group reading
sessions. The eBook club fostered small, intimate group interactions, allowing participants to
form deeper social bonds with fellow members. These close-knit relationships provided
emotional support and mitigated social isolation, helping participants maintain a sense of

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connection despite a shrinking social network. This process was evident in how participants
described their relationships with other group members. For example, one participant shared,
I used to be part of bigger groups, but this small reading group felt much more intimate. I
genuinely connected with everyone; it was like we all showed up for each other, creating a space
where we could share openly and supportively. It felt special” [Participant #9, 70 years]. Another
participant reflected,
We weren’t just discussing the books; we were sharing pieces of our lives, which made
the experience so much more meaningful. It became more than a reading group—it was a place
for connection and understanding, where each story sparked deeper conversations about our own
experiences [Participant #11, 60 years].
Adaptation to physical and cognitive decline: Coping with age related changes
The participants described how they adapted to physical and cognitive challenges by
engaging in emotionally meaningful activities, particularly reading with the eReaders. SST
emphasizes that older adults can maintain or even enhance their subjective well-being by
focusing on emotionally meaningful experiences, even as future-oriented goals become less
relevant (Lӧckenhoff & Carstensen, 2004). Many participants reported that using eReaders made
it easier to engage in reading despite physical challenges such as arthritis or vision impairments.
Features such as adjustable text size and lightweight design facilitated sustained engagement,
highlighting how participants adapted to their limitations while continuing to enjoy emotionally
meaningful activities. One participant noted,
“I used to struggle with holding books because of my arthritis, but the eReader changed
everything. I could read comfortably again, and it was such a relief to enjoy my books without

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the pain. It brought back the simple joy of reading that I thought I had lost” [Participant #27, 81
years].
Another participant commented,
“Despite all the limitations I face now and the activities I’ve had to give up, reading
remains something I can still do and truly enjoy. It’s a comforting constant, a reminder that I still
have something meaningful to hold onto. Being able to lose myself in a story, to experience new
worlds or perspectives even from my own home, gives me a sense of independence and joy that I
cherish deeply.” [Participant #10, 78 years].

Figure 12:Joint display of qualitative and quantitative findings on the impact of the eBook clubs on
apathy.

Mitigation Strategies to successful implementation of eBook clubs
The implementation of eBook clubs among rural, community-dwelling older adults
provided valuable insights into a range of creative solutions developed for successful
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implementation of digital reading programs for this demographic. Themes identified included
strategies to: address technological setup and usability, understand eReader use instructions,
group engagement, and personalization.
Technology set up and Usability
For some, the experience of setting up and navigating the Kobo eReaders was new.
Participants described need to learn how to connect to Wi-Fi, skills in downloading books, and
ways to safely locate free content. As one participant noted,
“Setting it up was not that easy… I need to meet with someone to help me do it.”
[Participant #13, 86 years].
These experiences highlighted the value for additional support, often provided by peers, to help
participants become familiar with the device. Physical challenges were also common, with some
participants finding it a new sensation to hold the eReader for extended periods or to read
comfortably in bed. Tailored, hands-on assistance during setup, including in-person support
provided by family or friends for troubleshooting and device handling, was suggested as a
potential solution. Additionally, the lightweight device option provided through use of the Kobo
eReaders as compared to large print books and access to supportive holders were found to
alleviate physical strain and improve usability for participants with limited mobility.
Understanding Instructions
Participants expressed a desire for comprehensive, easy-to-understand guidance.
Suggestions included visual aids such as photo infographics or step-by-step guides that could
help clarify the device’s features. As one participant stated,
“If I had the notes explaining everything about the Kobo from the start, it might have
been easier.” [Participant #21-, 69 years].

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Participants recommended that these materials should cover both basic navigation and advanced
functionalities, such as accessing Overdrive and Libby, to enhance user confidence.
Comprehensive, visually supportive guides were identified as a useful strategy to empower
participants to independently address technological issues by having ample resources to refer
back to as needed, helping them independently troubleshoot common issues and also to explore
the full capabilities of the eReader.
Group Engagement
The eBook club aimed to foster a sense of community. For some participants
participation in a group eReader club was challenging and it took time for some participants to
fully connect with the group. By the time of follow-up, many participants expressed a desire for
more collective activities. However, for one participant they remained challenged to connect
with others through the group:
“I couldn’t really get part in with the whole group,” indicating a gap in group cohesion.
[Participant #8, 63years].
Others expressed interest in more structured social opportunities, suggesting that shared reading
sessions or facilitated group discussions could strengthen engagement and encourage a sense of
belonging. Regular, structured group activities such as weekly discussions, icebreakers, or group
reading sessions could be incorporated to foster deeper social connections and make the
experience more enjoyable and interactive.
Reading pace and content
Participants were enthusiastic to engage in the reading activities and often desired to read
ahead. Having a weekly chapter limit occasionally felt restrictive, with some members preferring

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to read at a faster pace and expressed eagerness to find out what happened next in the book.
Feedback such as,
“I would have liked to read more than five chapters at a time,” emphasized a desire for
flexibility in the reading schedule as well as an enthusiasm to embrace eReader technology.
[Participant #1, 70 years].
Programs could address this by offering customizable reading plans, allowing participants to set
their own pace and progress based on individual preferences, and encouragement to read more
than one book at a time. Additionally, some participants suggested adding audiobook
functionality to accommodate different learning preferences. Incorporating audiobook options
could make the program more accessible for participants who prefer auditory engagement or face
visual limitations, enhancing satisfaction and inclusivity.
Opportunity
Need to newly set up
and navigate the Kobo
eReaders devices

Mitigation Solutions
Provide tailored, hands-on support during setup, including in-person
assistance for familiarizing participants with eReader functions
including connecting to Wi-Fi, downloading books, finding free
content, and troubleshooting.

Adjustment to read in
bed or hold device for
long periods.

Consider lightweight device options or eReader holders for easier
handling, especially for those with limited mobility.

Need to learn and
understand text-based
instructions

Create a step-by-step guide with images, covering basic and
advanced eReader functionalities, including Overdrive and Libby.
This would allow participants to refer back to instructions as
needed.

Need to navigate the
device and leverage its
full range of features

Offer printed or digital support materials with a focus on frequently
used features, making it easier for participants to troubleshoot on
their own.

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Group engagement

Incorporate structured group activities, such as weekly discussions,
icebreakers, or collective reading sessions, to foster social
connections and a sense of community.
Schedule group reading or discussion sessions that encourage
shared experiences and allow for reflection on common themes.

Varied reading pace
and content

Offer customizable reading plans, allowing participants to set their
own pace and progress based on their preferences. This flexibility
can accommodate different reading speeds and engagement levels.

Vision and mobility
issues

Consider incorporating audiobook features to increase accessibility
for participants with visual limitations or those who prefer auditory
learning, enhancing engagement and satisfaction.

Table 9: Practical solutions to the challenges encountered during the eBook club implementation

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Discussion
Use of eReaders and participation in an eBook club reduced self reported apathy among
community dwelling older adults in northern BC. The significant reduction in apathy scores over
the course of the program, highlights the potential impact that eBook club can have on apathy
among rural community dwelling older adult. Consistent with SST’s positivity effect, which
posits that as individuals age, they increasingly focus on positive emotional experiences to
regulate their mood and well-being (Carstensen et al., 1999), participants in our study reported
that reading, both independently and in a group setting, provided emotional satisfaction and a
sense of accomplishment, helping them shift away from negative emotions and reduce feelings
of apathy. Some participants also expressed that reading gave them a sense of joy and provided a
mental escape from the stresses of daily life. In addition, participants prioritized reading as an
enjoyable activity, reinforcing the positivity effect described in SST. The shared nature of
reading, combined with the flexibility of using eReaders, created opportunities for participants to
engage in positive emotional experiences that helped improve their overall mood and
engagement.
This selective social interaction was evident in the participants' experiences during the
eBook club. This key process emphasized by SST includes the selective pruning of social
networks, where older adults tend to focus on maintaining emotionally significant relationships
while cutting back on less meaningful social connections (Carstensen, 2006). Rather than
forming new and superficial connections, participants formed deeper, more meaningful
relationships with other group members. These interactions provided emotional support and a
sense of connection, which is critical in managing apathy. Additionally, participants highlighted
the value of the small group discussions, where they felt comfortable sharing their thoughts and

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experiences. This process allowed them to form meaningful bonds, reinforcing their sense of
belonging. As older adults often face social isolation, particularly in rural settings, the ability to
maintain and nurture emotionally meaningful relationships through the eBook club helped
reduce feelings of loneliness and social disengagement, which are common contributors to
apathy.
In this study, participants demonstrated how they were able to adapt to age-related
challenges, such as declining vision or arthritis, by using the eReaders to continue engaging in
reading. SST also emphasizes the importance of adapting to physical and cognitive decline by
focusing on emotionally meaningful activities (Lӧckenhoff & Carstensen, 2004). The adjustable
text size and lightweight features of the Kobo eReaders helped participants overcome barriers
that would have otherwise limited their ability to enjoy reading. This ability to adapt highlights
SST’s principle that older adults prioritize emotionally meaningful activities that are aligned with
their physical and cognitive capacities. Even as some participants faced difficulties related to
memory or physical health, the accessibility of the eReader allowed them to remain engaged in
reading, maintaining a sense of purpose and avoiding apathy. The ease of use of the eReaders
also reduced frustration for participants, ensuring that reading remained a fulfilling activity
despite the challenges of aging.
While the eBook program demonstrated great opportunity to engage older adults through
reading and social interaction, several needs were identified that needed to be addressed to
ensure access to and continued use of the Kobo eReaders and involvement in the program.
Mitigation strategies were created by participants to address difficulties they experienced with
the initial setup and navigation of the Kobo eReaders. This included challenges to initially learn
and start using the eReaders as well as need to understand how to connect to Wi-Fi, borrow

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books from the library, or access learning the other functionalities of the device. These
experiences when adapting to a new technology are not uncommon, particularly among older
adults who may have limited experience with technology. Previous research has shown that older
adults often face challenges when adopting new technologies, including difficulties with
interface design, learning new functions, and troubleshooting problems independently (Heart &
Kalderon, 2013). The unfamiliarity with digital devices can lead to frustration suggesting the
initial hurdles indicate that more robust support may be necessary during the onboarding process.
However, in our study, many participants eventually overcame these challenges. Further, the
challenges related to accessing free eBooks is consistent with previous studies which noted that
older adults often require simplified, step-by-step instructions to successfully engage with new
technologies (Czaja & Sharit, 2013; Mitzner et al., 2010). To address the initial difficulties
participants faced with setting up the eReaders, the study incorporated hands-on support sessions
and provided detailed step-by-step guides. For future implementations, incorporating a peersupport model where tech-savvy participants assist others could further enhance user confidence
and engagement.
Although eReaders are designed to be lightweight and portable. There are features built
into the Kobo eReader that participants used in this. For example, participants were able to push
button instead of swipe on screen when navigating to the next page. This finding echo broader
concerns in gerontechnology research, where physical ease of use is a key factor in determining
the success of technology adoption among older adults. Devices that are not optimized for the
physical capabilities of older users can hinder engagement and discourage long-term use (Czaja
& Lee, 2007). Addressing these physical challenges by offering adaptations or ergonomic tools
may help improve the experience for users and encourage more consistent participation.

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Some participants expressed desire for more opportunities to interact with others in a
collective setting. Participants desired longer engagement in the eReader clubs than the initial 6week duration during this study. The desire for more frequent or structured group reading
activities could suggest that participants might have benefited more from the program if offered a
greater variety of group interaction opportunities. For instance, smaller, more intimate reading
circles or one-on-one discussions. This further aligns with SST, which posits that older adults
often prefer deeper, more emotionally meaningful interactions over broader social networks as
they age (Carstensen, 2006).
Strengths and limitations
One of the key strengths of this study was that it was conducted immediately postCOVID, a time when many older adults were emerging from extended periods of isolation and
reduced social interaction. The study offered participants a valuable opportunity to reconnect
socially and re-engage in meaningful activities, addressing both emotional and cognitive
challenges that may have been exacerbated during the pandemic. Additionally, the use of
eReaders and reading groups provided a flexible, accessible means for participants to interact,
which was particularly beneficial considering the technological adaptations many had adopted
during the pandemic. The timing of the study also allowed for insights into how digital tools can
be used to foster social connections and reduce apathy among older adults in a post-pandemic
world. While the study provides valuable insights into the use of eBook clubs for mitigating
apathy, there are several limitations that should be acknowledged. The study relied on selfreported measures of apathy, which may be subject to bias. More objective measures, such as
observational data, could provide further validation of the findings. Further, the length of the
intervention varied between participants, ranging from four to six weeks. While this flexibility

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accommodated different schedules and allowed for individualized participation, it may have led
to some nuances in participants' experiences being overlooked. A longer duration was desired by
participants and a longer standardization might have provided greater consistency in capturing
the longer-term outcomes.
Implications for Practice
This study demonstrates the feasibility and potential impact of digital interventions such
as eBook clubs in reducing apathy among rural older adults. By aligning the program with
Socioemotional Selectivity Theory, the findings provide evidence for the importance of fostering
emotionally meaningful activities and social connections. Practitioners should consider
incorporating accessible technology, such as eReaders, to support older adults to continue
engaging in activities that bring them joy, even when facing physical limitations. Furthermore,
the emphasis on small group interactions reflects the importance of fostering close social
relationships, rather than encouraging superficial social networks, as a means of enhancing
emotional well-being. Future programs may consider integrating peer support models in which
more tech-savvy participants help others navigate the devices and troubleshoot problems,
fostering a sense of community while addressing technical challenges. These modifications could
enhance the accessibility and inclusivity of eBook club programs, ensuring that all participants
feel supported and able to engage fully in both the technological and social aspects of the
intervention.
Conclusion
Use of eReaders and participation in eBook clubs were successful to reduce apathy
among older adults. As described through the lens of SST, by engaging in emotionally
meaningful reading and fostering close, supportive relationships within the eBook club,

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participants were able to regulate their emotions, maintain social connections, and adapt to the
challenges of aging. These processes helped participants remain engaged, fulfilled, and
emotionally balanced, effectively mitigating apathy and enhancing their overall well-being.
Future studies could explore the role of other emotionally meaningful activities, beyond reading,
in reducing apathy among older adults in different settings. Understanding how technology can
be tailored to meet the needs of individuals with more advanced cognitive impairments could
expand the applicability of such interventions.

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Chapter Nine: Results and Major contributions
The primary goal of this dissertation was to investigate apathy as a distinct clinical
syndrome in older adults, with and without dementia, across diverse care settings. To this end, a
multimethod approach was employed to answer five research questions. The first question (RQ
1) addressed the barriers and facilitators to apathy management. The second and third questions
(RQ 2 and 3) focused on the prevalence and predictors/risk factors of apathy among residents
with and without dementia in LTCF. The third and fourth questions (RQ 3 and 4) explored the
impacts of eBook clubs on apathy among individuals living in LTCF and community settings.
The findings are presented as follows:
RQ 1: What are the barriers to and facilitators of apathy among older adults across
various settings?
The first study (Chapter Four) focused on understanding the barriers and facilitators to
optimal care for older adults with apathy, particularly in the context of its detection and
management. This integrative review synthesized findings from 34 studies conducted across
Europe, North America, and Australasia, examining the challenges faced by caregivers and
healthcare professionals in identifying and addressing apathy in older adults with and without
dementia. On one hand, the review revealed that a major barrier to optimal care for apathy was
the absence of a universally accepted definition (Agboji et al., 2024a). This lack of consensus on
what constitutes apathy leads to inconsistencies in diagnosis and treatment (Caeiro et al., 2013;
Mele et al., 2020). In addition, it was noted that apathy is often confused with other conditions
such as depression or fatigue, making it challenging for healthcare providers to distinguish it as a
distinct syndrome (Agboji et al., 2024a). These overlapping symptoms further complicate
accurate detection and can delay appropriate interventions (Agboji et al., 2024a). The review
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highlighted significant methodological limitations in the studies reviewed, including small
sample sizes, varied diagnostic tools, and a lack of blinding in treatment protocols, which made it
difficult to establish clear, reliable guidelines for treating apathy (Agboji et al., 2024a).
On the other hand, the review identified several facilitators that can improve care for
individuals with apathy including active involvement of both patients and caregivers in the
diagnostic and treatment process (Agboji et al., 2024a). By including caregivers in the decisionmaking process, healthcare providers are more likely to capture a comprehensive picture of the
patient's symptoms, improving the accuracy of diagnosis and the relevance of interventions
(Agboji et al., 2024a). Additionally, the review emphasized the need for better education and
training for healthcare professionals, particularly those working in LTCF (Agboji et al., 2024a).
Increased awareness of apathy among healthcare providers can lead to earlier identification and
more effective treatment (Agboji et al., 2024a). Furthermore, the adoption of new screening
methods, particularly those using ICT, can improve the efficiency of detecting apathy and enable
healthcare providers to monitor symptoms more accurately (Agboji et al., 2024a).
However, despite the agreement with existing evidence, the review identifies some gaps
in the literature that remain unaddressed. One significant gap is the ongoing lack of a
standardized definition and diagnostic criteria for apathy. While efforts to establish a universally
accepted definition are ongoing, the absence of such a framework continues to create ambiguity
in both research and clinical practice. This gap contributes to inconsistent measurement and
hinders the development of effective, universally applicable interventions (Mele et al., 2019).
Despite various attempts to standardize assessment tools, apathy’s multifaceted nature remains
difficult to capture consistently (Borsje et al., 2018; Tay et al., 2021).

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Another notable gap identified in the existing literature is the lack of Canadian studies
focusing specifically on the prevalence and risk factors for apathy among older adults. While
much of the research on apathy in dementia and LTCF has been conducted internationally, there
is a paucity of research specific to the Canadian context (Agboji et al., 2024a). This lack of
localized research is particularly concerning given the unique healthcare system, demographic
composition, and care environments in Canada (Martin et al., 2018). Factors such as cultural
diversity, regional variations in healthcare delivery, and the growing aging population may
contribute to the manifestation and management of apathy in distinct ways across Canadian
provinces and territories (Agboji et al., 2024a). This gap prompted the need to establish the
prevalence and risk factors for apathy in Canadian LTCF to inform healthcare policies, improve
care practices, and tailor interventions to meet the needs of older adults in Canada.
RQ 2: What is the prevalence and what are the risk factors for apathy among the Canadian
LTCF residents?
The second study (Chapter Five) sets out to examine the prevalence of apathy and
identify its key predictors among residents newly admitted to LTCF across Canada. Using data
from the InterRAI Minimum Data Set (MDS 2.0), the study analyzed a sample of 157,596
residents across six provinces and one territory.
The study established a prevalence of apathy in 12.5% of the residents, with younger
residents (under 65 years) displaying a higher prevalence (14.2%) in contrast to older residents
(85 and above), where the rate was 11.9%. The prevalence of apathy was notably higher in
smaller LTCFs compared to larger ones (19.6% vs. 11.3%), and geographic location played a
role, with prevalence rates ranging from 6.8% in Yukon to 25.6% in Saskatchewan (Agboji et al.,

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2024b). These findings point to the importance of considering institutional and regional factors
when addressing apathy in LTCF (Agboji et al., 2024b).
The study also identified several predictors of apathy across biological, psychological,
and social domains. Biologically, age was a significant predictor, with younger residents being
more likely to exhibit apathy compared to older residents (Agboji et al., 2024b). Sensory
impairments, particularly hearing and vision difficulties, were also found to increase the
likelihood of apathy, with severe impairments showing the strongest associations (Agboji et al.,
2024b). Weight loss was another biological factor linked to higher odds of apathy (Agboji et al.,
2024b), which is consistent with previous studies that have suggested a relationship between
functional decline and emotional disengagement (Volicer et al., 2013). Psychologically,
cognitive impairment emerged as the strongest predictor of apathy (Agboji et al., 2024b). Severe
cognitive impairment was associated with the highest risk, which aligns with existing research
that links cognitive decline to the development of apathetic symptoms (Agboji et al., 2024b).
Socially, the study found that residents who spoke French or other languages were more likely to
exhibit apathy (Agboji et al., 2024b), suggesting that language concordance between residents
and caregivers might influence the recognition and management of apathy. Marital status, facility
size, and provincial location were also significant social predictors of apathy, indicating the
complex interplay of personal, institutional, and regional factors in its prevalence (Agboji et al.,
2024b).
These findings align with much of the existing literature on apathy in LTCF including
studies by Aguera-Ortiz et al. (2015), Ayers et al. (2017) and Starkstein et al. (2009) which
suggest that apathy is common among residents with cognitive decline, particularly among
people with dementia, and that it contributes to adverse outcomes such as increased dependency

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and higher mortality risk. Additionally, the finding that apathy is more prevalent in smaller
LTCF is also consistent with previous research suggesting that the quality of care and staff-toresident ratios impact the emotional well-being of residents (Chaudhury et al., 2017). However,
some aspects of this study’s findings diverge from existing research. For instance, the finding
that younger residents (under 65) have a higher prevalence of apathy than older residents is
somewhat unexpected, as most studies suggest that older adults, particularly those with advanced
dementia, are more likely to experience apathy (Selbaek et al., 2014). This discrepancy may be
attributed to the unique challenges faced by younger residents, who may experience factors such
as early-onset dementia or greater difficulties adjusting to institutional care. (Agboji et al.,
2024b). This finding highlights the need for more targeted research to explore the specific needs
and interventions across different aged LTCF resident cohorts.
Despite the valuable insights offered by this study, gaps still exist in the literature
regarding apathy in LTCF. The MDS 2.0 dataset lacks a predefined apathy scale or assessment
tool, which led to the innovative approach of combining two variables to define and measure
apathy, which was referred to as the Apathy Index in this study. In spite of the usefulness of this
approach, it does not fully capture all dimensions of apathy, particularly the emotional and
cognitive aspects. Future research should focus on developing more comprehensive assessment
tools that consider the full spectrum of apathy symptoms. Further, although this study identified
several predictors of apathy, its cross-sectional design limits the ability to establish causal
relationships. Longitudinal studies are necessary to better understand how these factors interact
over time and how early interventions may help prevent the development of apathy.
RQ 3: What is the prevalence and what are the risk factors for apathy among the Canadian
LTCF residents with dementia?

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The third study (Chapter Six) investigated the prevalence of apathy in residents with
dementia in LTCF across Canada. Using data from 97,789 newly admitted residents from 2015
to 2019, the study explored the biopsychosocial characteristics associated with apathy,
employing the biopsychosocial model of care (Engel, 1977).
Apathy was found to be prevalent in 13.1% of the sample, with notable differences in
prevalence based on age, language, and facility size. Interestingly, younger residents (under 65
years) exhibited higher rates of apathy (17%) compared to older residents (12%) aged 85 and
over, suggesting that apathy may present differently in younger individuals with dementia
(Agboji et al., 2024c). In addition, the study showed that apathy was more prevalent among
English-speaking residents and those in smaller LTCF (Agboji et al., 2024c). Biologically,
apathy was strongly linked to factors such as pain, psychotropic medication use, and cognitive
impairment (Agboji et al., 2024c). Residents who experienced severe pain showed a higher
prevalence of apathy, with those on psychotropic medications also exhibiting increased odds of
apathy (Agboji et al., 2024c). Cognitive impairment, measured by the CPS, was another
significant predictor of apathy in dementia (Agboji et al., 2024c). Psychologically, depression
and aggression were the most prominent factors associated with apathy (Agboji et al., 2024c).
The study also found that residents with moderate to severe depression were significantly more
likely to exhibit apathy (Agboji et al., 2024c). Social factors also played a key role. Apathy was
inversely related to engagement in various activities, such as music, exercise, and card games.
Residents who participated in these activities were less likely to experience apathy (Agboji et al.,
2024c). Further, the study found that facility size influenced the prevalence of apathy, with
smaller facilities reporting higher rates of apathy (Agboji et al., 2024c).

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The findings of this study align with previous research, which has consistently reported
that apathy is a common neuropsychiatric symptom in dementia and is associated with a range of
psychological, cognitive, and environmental factors (Lanctot et al., 2023; Marin, 1991; Roberts
et al., 2006; Starkstein et al., 2006; Steffen, 2022; Volicer et al., 2013). Despite these valuable
insights, there are gaps that needed to be addressed in future research. Longitudinal studies are
needed to examine how apathy evolves over time and interacts with other dementia symptoms.
Additionally, there is need to examine the role of other neurodegenerative diseases, such as
Parkinson’s disease or Huntington’s disease, in the development of apathy. Including a broader
range of co-morbidities in future research would provide a more comprehensive understanding of
the factors contributing to apathy in dementia.
RQ 4: What impact (s) does eBook club has on apathy among LTCF residents in rural
Northern British Columbia?
The fourth study (Chapter Seven) explored eBook clubs as a novel, non-pharmacological
intervention to mitigate apathy among older adults residing in LTCF. This study addressed the
dual goals of reducing apathy and promoting digital inclusion by introducing accessible eReaders
and structured reading sessions. A total of 20 participants, aged 51 to 98 years, engaged in
weekly eBook club sessions over an eight-to-twelve-week period. Results demonstrated a
significant reduction in self-reported apathy, with prevalence rates declining from 55% to 35%.
In addition to these quantitative findings, qualitative feedback highlighted the intervention's
cognitive, emotional, and social benefits. Participants consistently reported increased mental
stimulation, enhanced mood, and a sense of belonging through shared reading experiences
(Agboji et al. 2025). Many expressed enjoyment in learning to use eReaders, challenging
stereotypes about older adults’ reluctance to adopt new technologies (Mitzner et al., 2010).

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Accessibility features, such as adjustable font sizes and backlighting, were particularly valued for
overcoming physical barriers such as vision impairments.
Despite its success, the intervention faced challenges, including initial hesitation to
technology and occasional difficulties navigating eReaders. These findings brought into fore the
importance of providing targeted training and ensuring usability when introducing digital tools to
older adults. Participants’ overall positive reception of the eBook clubs suggests that intellectual
engagement, coupled with social interaction, is a powerful strategy for mitigating apathy in
LTCF settings. This study further demonstrates the potential of eBook clubs to serve as a
scalable, cost-effective intervention for addressing apathy in LTCF. By combining technology
with social engagement, the program alleviates apathy and fosters digital literacy and
empowerment among older adults. Future implementations could expand these efforts by
incorporating hybrid formats that include both digital and physical books to accommodate
diverse preferences.
RQ 5: What impact (s) does eBook club has on apathy among community dwellers in rural
Northern British Columbia?
The fifth study (Chapter Eight) explored the impact of eBook clubs as a novel, nonpharmacological intervention for apathy among community dwelling older adults in rural
Northern BC. Guided by SST, the intervention aimed to foster emotional engagement and social
connection through reading activities. At baseline, the study found apathy prevalence to be 54%,
underscoring the challenges older adults face in rural areas, where access to social and
recreational opportunities is limited. After participating in the eBook club intervention, apathy
prevalence dropped significantly to 11%, demonstrating the effectiveness of this approach.
Participants further described three primary mechanisms through which the intervention reduced

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apathy: emotional stimulation, enhanced social connections, and the ability to overcome physical
barriers.
While the intervention was largely successful, some participants encountered initial
challenges, including apprehension about using eReaders and variability in reading pace. These
issues were addressed through hands-on support from facilitators and peer mentorship,
emphasizing the importance of personalized approaches in program implementation. Participants
also recommended flexible session structures to accommodate individual preferences and ensure
inclusivity. The findings underscore the value of integrating similar initiatives into community
care programs, particularly in rural areas where older adults often face limited opportunities for
engagement. To enhance the success of such interventions, community organizations and
healthcare providers should prioritize accessibility, provide robust training and support, and
tailor activities to meet participants’ diverse needs.
Discussion
Across all five studies in this dissertation, apathy was present among individuals in both
institutional and community settings, with variations across age groups and cognitive impairment
levels. For example, studies two and three found that younger residents (under 65) exhibited
higher rates of apathy than their older counterparts, challenging the conventional belief that
apathy is primarily a symptom of advanced age or dementia (Agboji et al., 2024b; 2024c). These
findings highlight the need for interventions that account for a broader range of demographic and
cognitive profiles. In addition, the results underscore the importance of tailored interventions to
support older adults in diverse environments, including LTCF and rural communities, where
opportunities for social engagement and mental stimulation are often limited (Brodaty et al.,
2010; 2012; Jao et al., 2019).

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Furthermore, studies two and three collectively identified a range of biological,
psychological, and social factors that serve as predictors of apathy in LTCF. Biologically,
cognitive impairment emerged as one of the strongest predictors of apathy, with residents who
had severe cognitive decline exhibiting higher rates of apathy. This is consistent with existing
literature, which suggests that apathy is closely linked to neurodegenerative processes such as
dementia (Starkstein et al., 2006). In addition to cognitive impairment, sensory deficits,
particularly hearing and vision problems, were associated with increased likelihood of apathy.
These findings emphasize the need for comprehensive assessments that take into account not
only cognitive health but also sensory and physical impairments, which may significantly impact
older adults' ability to engage with their environment. Psychologically, depression and
aggression were strongly associated with apathy in LTCF. The overlap between apathy and
depression has been well-documented (Lanctot et al., 2023; Levy et al., 1998; Marin et al., 1993;
Steffen et al., 2022), and these studies further emphasize the importance of careful differential
diagnosis. Effective treatment of apathy requires distinguishing it from mood disorders such as
depression, as both share symptoms including withdrawal and lack of motivation but have
different underlying mechanisms (Steffens et al., 2022). Social factors also played a crucial role
in the development and mitigation of apathy. Specifically, social engagement and participation in
structured activities were key factors in reducing apathy. This result reinforces the usefulness of
novel intervention such as an eBook club in mitigating apathy among residents in LTCF.
As demonstrated in studies four and five, the eBook club interventions facilitated
emotional engagement and social connection through shared reading experiences, and these
elements were repeatedly highlighted by participants as pivotal to the intervention’s success.
These findings also underscore the importance of fostering social interactions and emotional

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connections in any intervention aimed at addressing apathy. Additionally, participants in these
studies highlighted the need for flexible session structures that could accommodate individual
preferences, further emphasizing the value of personalized approaches to care.
The Biopsychosocial Model and Socioemotional Selectivity Theory in combination
provided a comprehensive lens for understanding and addressing apathy in older adults. The
Biopsychosocial Model guided the quantitative analysis by framing apathy as the result of
interacting biological, psychological, and social factors while the Socioemotional Selectivity
Theory supported the intervention phase by explaining why older adults prioritize emotionally
meaningful activities, helping to interpret participants’ engagement with the eBook club.
Together, these frameworks enhanced the study’s ability to identify risk and design interventions
tailored to the emotional and social needs of aging populations. By aligning each theoretical
framework with distinct methodological strands, this study maintained conceptual clarity while
generating a more comprehensive understanding of apathy.
Moreover, lessons learned from studies four and five highlight that designing an eBook
club requires careful consideration of the participants’ needs and preferences to ensure
engagement and inclusivity. A successful program begins by identifying the target audience and
understanding their demographic and individual needs. This includes assessing physical,
cognitive, and sensory capabilities such as vision, hearing, mobility, and cognitive processing
(Wu et al., 2015) to determine suitable features that enhance participation. For example,
individuals with poor eyesight may benefit from devices with adjustable font sizes or text-tospeech functionality, while those with cognitive impairments might prefer simplified or
segmented materials (Saredakis et al., 2021; Moyle et al., 2013).

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Understanding participants' interests is equally important for fostering engagement in an
eBook club. Surveys or informal discussions can help facilitators identify preferred genres,
authors, or topics that resonate with the group, creating a sense of excitement and ownership.
Tailored group formations can further enhance participation. For example, specialized groups for
individuals with dementia may benefit from abridged or visually enriched texts, while thematic
groups, such as one for veterans, might focus on military history or travel memoirs. Book
selections should accommodate diverse preferences, including light fiction, poetry, and short
stories, which are well-suited for individuals with limited attention spans (Billington et al.,
2013). Rotating monthly themes such as mystery novels or inspiring memoirs keeps the
experience fresh and engaging. Additionally, interactive eBooks featuring annotations or
discussion prompts can deepen engagement, providing facilitators with structured material to
guide conversations.
Technology plays a dual role as both an enabler and potential barrier, making
accessibility an important design element when implementing an eBook club among older adults.
User-friendly eReaders or tablets with features such as high-contrast displays, large fonts, and
audio narration can accommodate a wide range of needs. Providing hands-on technical support,
including tutorials and troubleshooting, ensures participants feel confident using the devices
(Czaja & Sharit, 2013). For group reading sessions, shared equipment such as projectors or TV
screens can display eBooks for collective reading, fostering inclusivity. In addition, virtual
eBook clubs hosted on platforms such as Zoom or Microsoft Teams can accommodate
participants unable to attend in person. Interactive applications that enable note-sharing and
annotations encourage active participation. Multimedia elements, such as videos or audio clips
related to the book, add depth to discussions and keep participants engaged.

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Structured sessions form the backbone of effective eBook clubs (Kebede et al., 2022; Sen
et al., 2022). Warm-up activities, such as sharing favorite books or authors, can break the ice and
create a comfortable environment. A mix of silent reading, group reading, and facilitator-led
excerpts caters to diverse preferences and can promote inclusivity. Thematic discussions allow
participants to connect the book’s content to their own experiences (Carney et al., 2023), while
creative activities like drawing, writing reflections, or sharing personal stories inspired by the
book enhance engagement (Smith, 1993).
Facilitators (recreational staff, care givers, research assistants or project directors) play a
key role in the smooth functioning of eBook clubs. They should be trained in active listening,
encouraging participation, and managing diverse group dynamics (Billington et al., 2013).
Empathy training is important, serving as a cornerstone for equipping facilitators to support
individuals with cognitive or emotional challenges effectively. Flexibility is also important;
facilitators should adapt their approach based on the group’s energy levels, shifting from
discussions to lighter activities if needed (Billington et al., 2013).
Strengths and Limitations
This dissertation provides the first comprehensive, multidimensional study of apathy
among older adults in Canada, particularly those in LTCF and rural communities. A key strength
of this research is its holistic approach: combining quantitative and qualitative methods not only
allowed for measuring the prevalence and predictors of apathy but also provided deeper insight
into how interventions, such as eBook clubs, influence residents’ emotional, cognitive, and social
well-being. In addition, the integration of objective data with participants' lived experiences
captured the full complexity of apathy, underscoring the importance of person-centered care.

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The focus on non-pharmacological interventions, specifically, eBook clubs, is a
significant strength. By demonstrating that eBook clubs can reduce apathy while promoting
digital inclusion, social interaction, and cognitive engagement, this research contributes valuable
evidence to the growing body of knowledge surrounding non-pharmacological interventions for
apathy (Cai et al., 2020; Oba et al., 2022). The effectiveness of these interventions in the context
of reducing isolation and fostering social bonds, shows promise for scalable and cost-effective
solutions to apathy in both institutional and community settings. These findings align with
previous literature that emphasizes the importance of cognitive and social engagement for
enhancing the quality of life for older adults (Mitzner et al., 2010). Further, the inclusion of both
urban and rural communities adds depth to the findings, demonstrating that apathy is a
widespread issue that affects older adults across various settings. This broadens the scope of this
research, making it relevant to different healthcare settings and regions.
Despite these strengths, several limitations must be acknowledged. One of the main
challenges across the studies is the cross-sectional design employed in some of them, which
limits the ability to make causal inferences. While the findings regarding the prevalence and
predictors of apathy are robust, cross-sectional data can only establish associations rather than
causal relationships. Longitudinal research would be valuable in understanding the progression
of apathy over time and determining the long-term effectiveness of interventions such as eBook
clubs.
Moreover, although participants from diverse settings were included in these studies,
there is limited ethnic and cultural diversity among participants. The studies primarily focused on
English-speaking populations, and demographic factors such as ethnicity, socioeconomic status,
and cultural background were not sufficiently explored. As a result, the findings may not be fully

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applicable to more diverse populations, particularly in regions where cultural factors play a more
significant role in care dynamics. Future research should aim to include a broader range of
participants from diverse cultural backgrounds to ensure that the findings are more universally
applicable.
Another limitation relates to the challenges associated with technology adoption (Mitzner
et al., 2019). While the eBook club interventions were largely successful, some participants
initially struggled with using eReaders, highlighting the barriers that older adults face in adopting
new technology. Resistance to technology, difficulties navigating devices, and variability in
digital literacy were noted as challenges that needed to be addressed through targeted training
and ongoing support. These issues are particularly relevant for older adults with limited prior
exposure to digital devices. The need for accessible, user-friendly technologies and
comprehensive training programs is crucial for ensuring the success of such interventions.
The studies also relied on a standardized tools such as the MDS 2.0 and GDS-3A to
measure apathy. While the MDS 2.0 is widely recognized as a valid and reliable assessment
instrument, they do not capture the full spectrum of apathy, particularly its emotional and
cognitive dimensions. Apathy is a complex, multidimensional condition, and the assessment
tools used in these studies may not fully encompass its varied manifestations. While leveraging
pre-collected data enhances efficiency and enables large-scale analyses, it restricts the ability to
incorporate nuanced diagnostic criteria or capture all relevant dimensions of apathy. For
example, while Marin’s criteria require the exclusion of apathy caused by physical disabilities or
substance effects, these details may not be available in secondary datasets. In addition, the MDS
2.0 primarily focuses on the behavioral and social dimensions of apathy, potentially neglecting
its emotional and cognitive aspects. This narrow focus may result in an incomplete assessment of

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apathy. Additionally, some items within the MDS 2.0 have demonstrated questionable reliability
and validity, which could affect the accuracy of apathy measurements (Morris et al., 1999).
Similarly, while the GDS-3A has high specificity, accurately identifying non-apathetic
individuals, its low sensitivity suggests it is not reliable for determining the prevalence of apathy
in specific populations, reduces its effectiveness as a screening tool for apathy (Bertens et al.,
2017). Future research could benefit from developing more comprehensive and nuanced
assessment tools that better reflect the emotional and cognitive aspects of apathy.
Lastly, the studies did not include long-term follow-up data to assess whether the positive
effects of eBook clubs and other interventions were sustained over time. While the interventions
showed short-term success in reducing apathy, it remains unclear whether the benefits would last
or if continued participation is necessary to maintain improvements. Long-term follow-up is
needed to understand the sustainability of these interventions and to determining whether they
can be effectively integrated into ongoing care plans.

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Chapter Ten: Implications and Key Recommendations
The findings emphasize several implications essential for improving the management of
apathy in individuals both in LTCF and community settings.
Clinical implications
First, there is an urgent need to standardize the definition and assessment of apathy using
validated tools to ensure consistent diagnosis and treatment (Agboji et al., 2024a). Increased
awareness and targeted training for healthcare providers and caregivers are essential in
distinguishing apathy from related conditions such as depression. While these conditions may
share overlapping symptoms, understanding their distinct characteristics is important for accurate
diagnosis and appropriate intervention (Agboji et al., 2024a).
Caregivers play a pivotal role in apathy assessment, and their involvement can enhance
diagnostic accuracy and intervention planning. Technology-based solutions, including interactive
platforms and digital tools, offer promising avenues for scalable, patient-centered engagement,
reducing caregiver burden (Saredakis et al., 2020). Tailored interventions that consider
individual cognitive and functional capacities, such as art and music therapy, are particularly
important for addressing the unique needs of individuals with varying levels of dementia
(Saredakis et al., 2020). Interventions that integrate caregiver perspectives could provide dual
benefits for both patients and caregivers (Agboji et al., 2024b; Jao et al., 2019).
Policy-level interventions are necessary to promote the integration of apathy management
protocols across care facilities and regions. Public awareness campaigns and research into
diverse populations and long-term intervention outcomes are needed to address current gaps and
ensure evidence-based practices. Collectively, these strategies can enhance the quality of care

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and life for older adults while empowering caregivers and healthcare professionals (Agboji et al.,
2024).
Implications for future research
Future research on apathy among older adults should focus on deepening the
understanding and improving care outcomes for older adults experiencing apathy. Firstly, the
development of standardized, reliable, and validated multidimensional apathy diagnostic tools is
essential. Such tool should accurately differentiate apathy from overlapping conditions including
depression and cognitive decline to facilitate more precise treatment. Additionally, future studies
must include diverse populations, addressing geographic, cultural, and demographic differences,
to ensure findings are broadly applicable and sensitive to cultural nuances. Longitudinal research
plays a pivotal role in deepening our understanding of the progression of apathy over time and its
effects on quality of life, disease advancement, and caregiver burden. Further exploration of the
neurobiological, psychological, and social mechanisms underlying apathy could yield insights
into targeted interventions. For instance, investigating neural pathways linked to motivational
deficits may guide the development of effective pharmacological treatments. Intervention
research should emphasize evaluating the long-term effectiveness of both traditional and
innovative approaches.
Technology-driven solutions, such as virtual reality and robotics, as well as personalized
non-pharmacological therapies, warrant rigorous testing to determine their utility in different
care settings to prevent and mitigate apathy (Theleritis et al., 2017). Equally important is
enhancing the role of caregivers in apathy management (Agboji et al., 2024a). Research should
explore the development of caregiver training programs aimed at enhancing their ability to
support affected individuals while reducing caregiver strain. On a systemic level, studies should
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investigate the integration of apathy assessment and management into standard care protocols
and policies. This includes examining the cost-effectiveness and scalability of interventions
across diverse care environments. Furthermore, ethical and practical challenges, such as
obtaining informed consent from individuals with severe cognitive impairments and
implementing solutions in resource-constrained settings, should be prioritized in future research.
Key Recommendations
To improve care for residents in LTCF and enhance the quality of life of older adults
dwelling in the community setting, the following recommendations are made:
Recommendations for Nursing Practice
Implement Routine Apathy Screening for Older adults
Apathy is underdiagnosed in older adults due to its subtle presentation and overlap with
other conditions, such as depression or cognitive decline. To address this, routine screening for
apathy should become a standard component of care for older adults in both LTCF and
community settings. Given the absence of a scale to assess apathy in the MDS 2.0, the Apathy
Index used in this study can be embedded into the assessment to provide a standardized and
consistent method for measuring apathy in LTCF) residents (Agboji et al., 2024b; Agboji et al.,
2024c; Volicer et al., 2013). By formally recognizing apathy, the inclusion of this scale would
enable healthcare providers to better identify and address this condition, leading to the
development of more comprehensive and holistic care plans. This would facilitate ongoing
research by standardizing the measurement of apathy, contributing to improved care strategies
and enhanced quality of life for individuals affected by apathy.
Address Apathy as Integral to Person-Centered Care

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Effectively managing apathy in older adults requires interventions that are customized to
the individual’s unique needs, preferences, and capabilities. The findings highlight the
importance of person-centered care, which emphasizes understanding each resident’s personal
history, interests, and cognitive abilities (van der Ploeg et al., 2013). Nurses and care providers
should adopt a proactive approach in gathering detailed personal histories to inform care plans
and ensure that interventions resonate with residents on a deeper, more personal level. Such
interventions may simultaneously reduce apathy and enhance emotional well-being and social
interaction, contributing to an improved overall quality of life (Cohen-Mansfield et al., 2012;
Edvardsson et al., 2014). Additionally, integrating residents in meaningful daily activities, such
as reading, gardening, or crafting, can provide them with a sense of purpose and
accomplishment, which are essential for alleviating apathy (Agboji et al., 2024c).
Collaborate with caregivers
Caregivers, whether professional or familial, should be recognized as a vital part of the
care team to effectively manage apathy (Agboji et al., 2024a). Nurses should collaborate closely
with caregivers to gain a comprehensive understanding of the patient’s baseline behavior,
personality, and preferences. This information is invaluable in designing interventions that are
both meaningful and effective. Additionally, caregivers often serve as the primary observers of
changes in the resident's behavior, making their insights crucial for tracking progress and
adjusting care plans (Agboji et al., 2024a). Nurses can support caregivers by providing them with
education on recognizing apathy and strategies to engage older adults (Agboji et al., 2024a). This
collaborative approach ensures that the care plan is holistic, addressing both the patient’s needs
and the caregiver’s role in delivering effective care.

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Integrate Technology into care of older adults
Incorporating technology into the care of older adults with apathy can provide innovative
and scalable solutions. Interactive tablets with engaging applications, robotic companions, and
VR experiences offer new avenues for stimulating motivation and reducing apathy (Manera et
al., 2020; Saredakis et al., 2020). For example, VR can immerse residents in enjoyable or
familiar environments, such as a virtual forest walk or a visit to a childhood hometown,
rekindling interest and engagement. Robotic pets or humanoid robots can provide companionship
and interactive stimulation, especially for individuals with limited mobility or cognitive
impairments (Moyle et al., 2013). These technology-based solutions can complement traditional
care approaches, offering diverse and personalized options for reducing apathy in older adults.
Adopt interdisciplinary approach to care
Apathy in older adults often stems from a combination of psychological, social, and
physical factors, requiring a interdisciplinary approach to address effectively (Agboji et al.,
2024a). Nurses should work closely with other healthcare professionals, such as psychologists,
occupational therapists, and social workers, to develop comprehensive care plans (Agboji et al.,
2024b). Psychologists can provide expertise in motivational therapies and cognitive-behavioral
interventions, while occupational therapists can suggest activities tailored to the patient’s
functional capabilities. Social workers can address environmental and relational factors, such as
family dynamics and community engagement, that may influence apathy. By collaborating
across disciplines, nurses can ensure that care plans are well-rounded and address the
multifaceted causes of apathy, leading to better outcomes for residents.

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Recommendations for Nursing Education
Incorporate Apathy specific modules
Apathy remains underrecognized in clinical settings, partly due to a lack of emphasis on
its unique characteristics in nursing education. To bridge this gap, nursing curricula should
include dedicated modules that focus on apathy, its clinical manifestations, and its differentiation
from similar conditions such as depression and fatigue (Agboji et al., 2024b; 2004c). These
modules should provide students with a comprehensive understanding of the underlying causes
of apathy, including neurological, psychological, and social factors. Additionally, the training
should emphasize the use of validated diagnostic tools and highlight effective, evidence-based
management strategies. Early incorporation of apathy-specific training in nursing programs will
better equip future nurses to address this pervasive yet overlooked condition (Agboji et al.,
2024a).
Integrate simulation-based learning
Simulation-based education offers a practical and immersive way for nursing students to
develop their skills in identifying and managing apathy. Through carefully designed scenarios,
students can observe and respond to simulated cases of apathy, practicing interventions in a
controlled and low-risk environment. For instance, scenarios could include managing a resident
with dementia exhibiting apathy or designing an engagement plan for a community-dwelling
older adult. This hands-on approach not only enhances clinical competency but also fosters
critical thinking and decision-making (Chabrera et al., 2024). By integrating simulation-based
learning into nursing education, students can build confidence and proficiency in handling
complex cases involving apathy.

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Amplify continuing professional development
Given the evolving nature of healthcare, practicing nurses need access to ongoing
education on emerging trends and tools for apathy management. Regular workshops, seminars,
and certification programs can help nurses stay informed about the latest evidence-based
practices, including advancements in technology-assisted interventions and novel therapeutic
approaches (Gallagher, 2007). For instance, sessions on the use of virtual reality in apathy
reduction or updates on pharmacological treatments can be incorporated. Offering these
opportunities as part of professional development ensures that nurses remain at the forefront of
best practices, ultimately improving care outcomes for older adults.
Focus on Older Adult Care
Nursing education programs should place a stronger emphasis on older adult care, as the
aging population continues to grow globally. Within this focus, addressing the unique challenges
associated with apathy in older adults, both with and without dementia, is essential (Agboji et al.,
2024a). Courses should cover the impact of apathy on quality of life, caregiver burden, and
healthcare resource utilization. Additionally, training should explore age-appropriate
interventions, cultural considerations, and ethical dilemmas in managing apathy in older
populations.
Recommendations for Policy
Standardized Apathy Management Protocols
National policies should prioritize the development and implementation of standardized
guidelines for the assessment and management of apathy in long-term care and community care
settings. These protocols should include the use of validated diagnostic tools, such as the Apathy
Evaluation Scale (Marin et al., 1991) or Lille Apathy Rating Scale (Sockeel et al., 2006) or

170

Apathy Index (Agboji et al., 2024b; 2024c; Volicer et al., 2013) and provide clear
recommendations for evidence-based interventions. Standardized guidelines will help ensure
consistency in care delivery across diverse settings, promoting equity in the identification and
treatment of apathy. Policymakers should collaborate with healthcare organizations, professional
bodies, and academic institutions to develop these protocols and integrate them into existing care
frameworks.
Provide funding for innovative interventions
To address the multifaceted nature of apathy, governments should allocate dedicated
funding to support the research, development, and implementation of innovative interventions.
Technology-driven solutions, such as virtual reality, robotics, and interactive digital platforms,
have shown promise in engaging older adults and reducing apathy symptoms. Policymakers
should provide financial incentives to LTCF and home care services to adopt and integrate these
technologies into routine care. Ensuring affordability and accessibility will help bridge gaps in
care, especially in underserved or resource-limited communities.
Emphasize equity in training programs
Policymakers should include funding and support for training programs to equip
healthcare professionals and caregivers with the knowledge and skills to effectively address
apathy. These initiatives should target a wide audience, from nurses and social workers to
informal caregivers, providing them with practical tools and strategies for apathy management.
Training programs should also emphasize the importance of cultural sensitivity and address the
unique needs of diverse populations. Personalized engagement is central to culturally sensitive
care. Tailoring activities such as reading, or group discussions to reflect residents’ cultural
backgrounds fosters emotional connection and cognitive engagement, making these interventions

171

more meaningful and effective (Cai et al., 2020) helping to reduce apathy (Tang et al., 2018).
Culturally sensitive care also improves communication between staff and residents. When
caregivers are trained to understand and respect cultural differences, they can build trust and
better respond to residents’ unique needs, reducing feelings of disconnection and isolation that
often exacerbate apathy (Lanctôt et al., 2017). Family involvement in care planning ensures that
interventions align with residents' cultural identities and histories, increasing their effectiveness.
This enhances the emotional and social well-being of residents as well as strengthens their sense
of belonging and purpose within the LTCF community (Moyle et al., 2013). By investing in
education, policymakers can build a well-prepared workforce capable of delivering high-quality,
person-centered care.
Implement public awareness campaigns
Apathy remains a misunderstood and often stigmatized condition (Baber et al., 2021).
Public awareness campaigns are vital tools for educating communities about apathy, its impact
on individuals and caregivers, and the importance of early detection and intervention. These
campaigns should leverage various media platforms to reach a broad audience, dispelling myths
and encouraging proactive care. Highlighting personal stories and successes in managing apathy
can further humanize the condition and motivate individuals to seek help for themselves or their
loved ones.
Establish quality monitoring systems
To ensure the effectiveness of apathy management protocols and interventions, national
policies should include mechanisms for quality monitoring and accountability. Metrics such as
rates of apathy assessment, intervention uptake, and patient outcomes should be tracked across
LTCF and community care settings. Regular audits and reporting can help identify gaps in care

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delivery and areas for improvement. Establishing a national database on apathy-related outcomes
can further support research and policy development, fostering a culture of continuous
improvement in care practices.

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Chapter Eleven: Conclusion
This study provided a comprehensive exploration of apathy among older adults living in
LTCF and community settings. By presenting the barriers and facilitators to managing apathy in
Chapter Four, it has highlighted the multifaceted nature of this condition and the pivotal need for
innovative, person-centered approaches to address it. The findings discussed in Chapters Five
and Six underscore the importance of recognizing apathy as not merely a symptom of aging or
cognitive decline but a distinct condition that affects younger people and significantly impacts
quality of life, caregiver burden, and healthcare outcomes. The research emphasizes the
importance of early identification through standardized tools such as the Apathy Index, which
can serve as a reliable screening method to detect apathy in diverse populations. Furthermore, in
Chapters Seven and Eight, non-pharmacological interventions such as eBook clubs have shown
promise in mitigating apathy and fostering engagement. These interventions, when combined
with caregiver support and interdisciplinary collaboration, provide a holistic approach to
managing apathy effectively. In addition to practical applications, this study calls for systemic
changes at the policy level. Recommendations include the development of national guidelines for
apathy management, increased funding for research and innovative interventions, and
widespread education programs for healthcare professionals and caregivers. Public awareness
campaigns are also vital to destigmatize apathy and encourage proactive care-seeking behavior.
Looking ahead, future research should focus on refining diagnostic tools, understanding
the neurobiological underpinnings of apathy, and evaluating the long-term effectiveness of
various interventions. Inclusion of diverse populations and longitudinal studies will further
enrich our understanding and improve the generalizability of findings. By implementing the
insights and recommendations from this study, we can improve the quality of care and enhance

174

the lives of older adults, empowering them to remain engaged, motivated, and socially connected
in their later years. This research serves as a stepping stone toward a more compassionate and
effective approach to managing apathy in diverse care settings.

175

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Appendices
Appendix 1: Letter from Research Ethics Board (Studies One to Three)

219

Appendix 2: Letter approval from Northern Health Authority (Study Four)

220

Appendix 3: Certificate of ethical approval (Study Four and Five)

221

Appendix 4: Consent form
Exploring the impact of an eBook club on apathy in older adults in northern British Columbia
Consent Form for Community Dwelling Older Adults --- Participant Copy
Taking part in this study is entirely voluntary. You have the right to refuse to participate in this
study. If you decide to take part, you may choose to withdraw from the study at any time
without giving a reason and without any negative impact on your relationship with the
organization and/or individuals from which you were recruited. Please read the following
carefully:
I have read the information presented in the information letter
about the project.
I have had the opportunity to ask questions about my involvement
in this project and to receive additional details I requested.
I understand that if I agree to participate in this project, I may
withdraw from the project at any time with no consequences of
any kind.

YES

NO

YES

NO

YES

NO

I have been given a copy of this form.

YES

NO

I agree to be recorded in the interviews.

YES

NO

Your signature indicates that you consent to participate in this study.

______________________________________________________________________________
Participant’s Name (print)

______________________________________________________________________________
Participant’s Signature
Date

______________________________________________________________________________
Research Team Member’s Signature
Date

______________________________________________________________________________
Research Team Member’s Name (print)
If you would like to receive a brief summary of the study findings, please provide your email
address:
_____________________________________
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Exploring the impact of an eBook club on apathy in older adults in northern British Columbia
Consent Form for Community Dwelling Older Adults --- Researcher Copy
Taking part in this study is entirely voluntary. You have the right to refuse to participate in this
study. If you decide to take part, you may choose to withdraw from the study at any time
without giving a reason and without any negative impact on your relationship with the
organization and/or individuals from which you were recruited. Please read the following
carefully:
I have read the information presented in the information letter
about the project.
I have had the opportunity to ask questions about my involvement
in this project and to receive additional details I requested.
I understand that if I agree to participate in this project, I may
withdraw from the project at any time with no consequences of
any kind.

YES

NO

YES

NO

YES

NO

I have been given a copy of this form.

YES

NO

I agree to be recorded in the interviews.

YES

NO

Your signature indicates that you consent to participate in this study.

______________________________________________________________________________
Participant’s Name (print)

______________________________________________________________________________
Participant’s Signature
Date

______________________________________________________________________________
Research Team Member’s Signature
Date

______________________________________________________________________________
Research Team Member’s Name (print)
If you would like to receive a brief summary of the study findings, please provide your email
address:
____________________________________
223

Appendix 5: Interview 1 Guide
Participant ID code:

Date:

.

PART 1: Demographic Information
1. How old are you? _________ years
2. What is your gender?
 Male
 Female
 Non-binary
 Prefer to self-identify, please specify: ___________________________________
 Prefer not to say
3. What is the highest education you have received?
 Less than high school, grade completed _______
 High School
 College or university degree
 Post-graduate studies, specify ________________
4. Have you been diagnosed with dementia?
 Yes
 No
5. What is your marital status?
 Never married
 Married
 Partner/significant other
 Widowed
 Separated
 Divorced
PART 2: GDS-3A questionnaire
1.. Have you dropped many of your activities and interests?
 Yes
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 No
2. Do you prefer to stay in your room rather than going out and doing new things?
 Yes
 No
3. Do you feel full of energy?
 Yes
 No
Positive answers for apathy screening are "yes" to either or both questions
and "no" to the 2 questions. A score of 1 or higher indicates possible apathy.
PART 3: Reading
1. How long have you been reading (years)?
 less than 1 year
 1- 5 years
 over 5 years
2. How often do you read?
 Everyday
 Once a week
 Once a month
 Occasionally
3. Can you tell me about your past experiences of reading?
4.

Who is your favorite author?

5. What is your favorite book?
6. What types of books do you like to read? Fictional, non-fictional, poetry, religious?
7. How has your reading habit change over time since you came to the long-term care
facility/retire?
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8. What type of book or author of a book are you hoping to read? Stories, poems, novels,
and plays?
PART 4: Reader/eReader
1. Tell me about your experience of using tablets/eReaders to assist with reading.
2.

What type of devices have you used to help with reading? Probes: phone, tablets,
eReaders?

3. How do you feel about using this device?
4. How do you feel about trying a new reading device?

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Appendix 6: Interview 2 Guide
Participant ID code:

Date:

.

PART 1: GDS-3A questionnaire
1.. Have you dropped many of your activities and interests?
 Yes
 No
2. Do you prefer to stay at home rather than to go out and do new things?
 Yes
 No
3. Do you feel full of energy?
 Yes
 No
Positive answers for apathy screening are "yes" to questions 1 and 2, and "no" question 3. A
score of 1 or higher indicates possible apathy.
PART 2: Reading
1. What motivated you to join the eBook club?
a. What interested you most in the eBook club?
b. What motivated you to continue to take part in the eBook club?
2. Can you please share with me your experiences during the eBook club?
a. Do you think that your participation in the eBook club impacted your motivation
to do things you’ve always enjoyed?
b. Do you think that your participation in the eBook club impacted your motivation
to get involved in the group reading activities?
c.

Do you think that your participation in the eBook club impacted your mood?

d. Do you think that your participation in the eBook club helped you in building
relationships with others?
3. Can you please share with me your experiences during eBook club?
a. Are there aspects of the eBook club that stood out to you?
b. What is the biggest challenge you encountered during the eBook club?
c. Was the challenge addressed, and if so, how?
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d. What aspects of the eBook club do you think needs improvement?
4. How often do you read?
a. Did you read more or less often with the eReader?
5. Please tell me about your experience of reading with the eReader?
a. Was if fun and relaxing?
b. Was it interesting and enjoyable?
c. Did it meet your expectations?
d. what would you like to change on the eReader? Probes: book layout, font, color,
navigation etc.
e. What would you like to add to the eReader? Probes: book layout, font, color,
navigation etc.
f. What would you like to remove from the eReader? Probes: book layout, font,
color, navigation etc.
6.

Is there anything that I haven’t asked that you would like to share?

7. How do you feel about trying a new reading device?

228

Appendix 7: Supplementary tables for Study One

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