DEMENTIA AND NORTHERN CAREGIVING

by

Julie Dawn Wade
B.C.R., University of Calgary, 2008

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SOCIAL WORK

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
May 2012

©Julie Wade, 2012

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Dementia and Northern Caregiving

ii

Abstract
This research explores formal and informal caregivers' experiences providing care to
individuals living with Alzheimer's disease or a related dementia in the Northern Rockies
District, a rural remote district in northern British Columbia. Textual information provided
by caregivers participating in one focus group and four semi-structured interviews reveals a
northern perspective of the caregiving experience. A thematic analysis identifies multiple
themes. Two major themes associated with the experience of formal caregivers are: the facets
of formal caregiving and community, whereas the four major themes associated with the
experience of informal caregivers are: community and networks, communication, dementia
and caregiving resources, and personal experiences of informal caregiving. Similarities and
dissonances in the findings emerged in three main areas: with community; understanding of
dementia; and emotions associated with caregiving. Formal and informal caregivers provide
recommendations to help support caregivers living in northern British Columbia. These
findings and recommendations have the potential to influence health related services,
contribute to dementia care strategies, and complement existing planning for formal and
informal caregiver supports in northern British Columbia.

Dementia and Northern Caregiving

iii

Table of Contents

Abstract

ii

Tables

vi

Acknowledgement

vii

Dedication

viii

CHAPTER ONE

7

Setting the stage

7

Theoretical Perspective: Structural Social Work

9

Northern Remote British Columbia

9

Significance

10

Research Question and Objectives

11

CHAPTER TWO

12

Literature Review

12

Dementia

12

Caregiving

14

Setting the Stage for a Northern Remote Community

22

Caregiving in a Northern Remote Community

24

Caregiving and Dementia Related Services in the Northern Rockies District

26

CHAPTER THREE

29

Methodology

29

Exploratory Qualitative Approach

29

Process

30

Data Collection

34

Data Analysis

35

Treatment of Data

39

Dementia and Northern Caregiving

iv

CHAPTER FOUR

41

Research Findings

41

Demographics

41

Formal Caregivers Results

42

Informal Caregivers Results

50

CHAPTER FIVE

60

Discussion & Recommendations

60

Formal Caregivers

60

Informal Caregivers

65

Similarities and Dissonance within the Findings

68

Recommendations

71

CHAPTER SIX

78

Wrapping up

78

Limitations of the Study

78

Future Research

79

Implications for Social Work Policy and Practice

80

Personal Learning

81

References

83

Appendix A

98

Appendix B

99

Appendix C

100

Appendix D

102

Appendix E

103

Appendix F

104

Appendix G

107

Dementia and Northern Caregiving

v

Appendix H

108

Appendix I

109

Appendix J

111

Appendix K

113

Appendix L

114

Tables
Table i

40

Table ii

49

Dementia and Northern Caregiving

vii

Acknowledgement
I would like to acknowledge all the individuals who participated in and contributed to
my thesis. The knowledge and expertise shared through your stories of caregiving in the
Northern Rockies District is valuable and heartfelt. I want to thank you all for sharing your
experiences. I would like to thank the many organizations and community members within
Fort Nelson for assisting with the recruitment of participants for this study.
To the members of my thesis committee, Joanne Peirce, and Linda O'Neill, I extend
my appreciation for their invaluable guidance and advice through this journey. To my
supervisor, Dawn Hemingway, I am grateful for all the opportunities you have provided me,
both academically and professionally. Your mentorship is one 1 aspire to replicate.
To my friends and family, your love, support, and strength kept the light at end of the
tunnel bright. To Jenn, of Jenn and Julie, I couldn't have done this without you and look
forward to working together in the future. Finally, I would like to acknowledge and thank
Nick, my best friend and spouse whom 1 am truly grateful for his love, support, and
encouragement during this journey.

Dementia and Northern Caregiving

viii

Dedication
This work is dedicated to all caregivers, caring for individuals living with
Alzheimer's disease or a related dementia. For two very special informal caregivers, Wayne
and Beverly Boivin, your strength and love towards others is something I cherish, respect,
and hope to match. The late Rose Wilson, you are missed everyday and I look forward to the
time when we meet again.

Dementia and Northern Caregiving

7

CHAPTER ONE
Setting the Stage
During my academic and professional journey, I have been exposed to a variety of
health related human service professions. I have worked primarily with older adults in a
number of capacities, both in urban and northern settings. Specifically, I have gained
knowledge and experience working with, and providing care to, adults living with adult onset
health conditions. This professional experience has strengthened my philosophy of personcentered care and inspired my interest in caregiving. While my professional journey began in
an urban locale, I soon found myself relocated to a northern remote community. My pre­
existing knowledge of the health care system and service provision was challenged by my
new location and, in particular, with respect to the limited resources available. At the same
time, living and working in a northern remote community provided the opportunity to
develop my skills and abilities with advocacy, and motivated my passion for caregiving.
In addition to my professional experience, I have personal experience providing care
for my grandmother, one of many who live with dementia. My relationship with my
grandmother was one of a kind, as she was part of our family unit for thirteen years. She
supported my passion for working with people and helped develop my inner strength. My
grandmother was diagnosed with Parkinson's related dementia in 2003. Her journey with
dementia was not easy on the entire family, but especially on my grandmother. My siblings
and I supported my parents, who were my grandmother's primary caregivers for
approximately six years, until she passed away.
The strength and capacity of individuals and families to come together and care for an
individual with dementia strongly influences my perspective of caregiving. Throughout both
my professional and personal experience with caregiving, I have observed personal stress

Dementia and Northern Caregiving

8

related to financial and emotional issues, the experience of caregiver burden, and the
breakdown of families. On the other hand, I have also witnessed drive, resilience, and
collaboration amongst caregivers. Collectively, my professional experience coupled with my
volunteer, academic and personal anecdotes, fueled my interest in exploring caregivers'
experiences providing care for individuals living with dementia.
My awareness and involvement with both formal and informal caregiving, has
deeply influenced my interests in the stories of perseverance and resiliency of caregivers. I
feel compassion and empathy for caregivers as I have witnessed the struggle of those formal
caregivers who work in a bureaucratic system operating within limiting policies and
procedures. I am aware of day to day happenings of informal caregiving and I recognize the
immensity of meeting the needs of an individual with dementia especially, the challenges
living in a northern remote setting. At the same time, I am inspired by the dedication of both
formal and informal caregivers who are committed to their clients and their loved ones
through a complicated journey of dementia.
Through this research, looking at caregiving in a northern remote setting, I hope to
contribute to an improved societal and professional understanding of the realities of
caregivers caring for individuals living with dementia. From this research the personal
stories of caregivers' experiences will enrich the existing knowledge, compassion, and
improve services; thus hopefully playing a part in reaching the point where all caregivers
receive adequate support regardless of their place of residence.

Dementia and Northern Caregiving

9

Theoretical Perspective: Structural Social Work
My professional and academic experiences have influenced my standpoint and
practice framework. The dominant theoretical perspective I identify with is structural social
work. Structural social work emphasizes the need for critical analysis of oppressive social
orders and structures that prevent people from meeting their basic needs. In addition, the
structural social work perspective encourages advocacy, collective social action, analysis of
unequal distribution of wealth and services, and enhances the power of the people to promote
social change (Heinonen & Spearman, 2006). The structural social work perspective has a
strong emphasis on people's capacity for coping and relies on people gaining insight into the
root causes of oppressive social order. Structural social work is influenced by the feminist
perspective, adding the need to dismantle the dominant patriarchal structures within our
society (Mullaly, 2008). As a structural social worker, I would like to facilitate the
empowerment of caregivers to enact change in service provision for caregivers and
individuals living with dementia in a northern remote community.
Northern Remote British Columbia
Approximately 300 000 people live in northern
British Columbia BC. Population trends identified by
Hanlon and Halseth (2005) describe people living in
northern remote communities shifting from the age range

V><vn.if

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97

of 20 to 35 years of age towards the majority of people
I

living in northern remote communities being 45 to 65
years of age. In northern BC, the age demographics and

Dementia and Northern Caregiving

10

the concept of aging in place are impacting populations of people 65 years or older (Hanlon
& Halseth, 2005).
The Northern Rockies District encompasses about 10% of BC land mass and is
located in the northeast corner of the province. The Northern Rockies District consists of
seven communities: Fort Nelson, Prophet River First Nations, Fort Nelson First Nations,
Tetsa River, Toad River, Fireside, and Coal River. Fort Nelson is the largest community and
provides services to the entire Northern Rockies District. According to BC Statistics (2010)
there are approximately 6,000 people residing within this district. Approximately 1,615 of
the population are 45 years of age and older.
Northern Health (NH) is responsible for the delivery of all health related services
across approximately two-thirds of the province of BC including the Northern Rockies
District (Northern Health, 2008a). For the purpose of this study, data was collected from
individuals residing in the Northern Rockies District, located within the boundaries of the
northeast sector of Northern Health.
Significance
In Canada, approximately 60,150 new cases of Alzheimer's disease or related
dementia are reported each year and approximately 450 000 to 500 000 people are currently
living with dementia (Alzheimer Society of Canada, 2010; Chertkow, 2008). Dementia is
devastating for the individual with the disease, as well as for family and friends caring for a
person with dementia (Alzheimer Society BC, 2009; Vernooij-Dassen, Lamers, Bor, Felling
& Grol, 2000). By the year 2038, it is expected that 60 to 69% of informal care will be
provided to those living with dementia by their family members (Alzheimer Society Canada,
2010). Caregiving is a multi-faceted role with more factors to consider than numbers alone.

Dementia and Northern Caregiving

11

One factor to consider is the potential connection between caregivers' experience and
their geographical location. Moulton (2000) discusses some of the issues associated with
providing care for an individual with Alzheimer's disease in a northern community as
"downright inhospitable and fraught with danger" (p.l). Her reflections highlight a need to
better understand the experiences of formal and informal caregivers providing care for an
individual with dementia while living in a northern remote community.
Research Question and Objectives
This research answers the following question:
•

What are the experiences of formal and informal caregivers caring for individuals
living with dementia, in the Northern Rockies District of BC?

The main objectives of this research are:
•

to provide formal and informal caregivers the opportunity to describe their
experience's caregiving,

•

to gain a rich and deep understanding of the lives of formal and informal
caregivers, and consider any aspects of their experiences that are specific to a
northern remote community,

•

to ask these formal and informal caregivers to make recommendation's arising
from their experiences of providing care in northern remote community in BC.

Dementia and Northern Caregiving

12

CHAPTER TWO
Literature Review
It is crucial to understand the responsibility, knowledge, and expertise included in
caregivers' experiences in order to understand the scope of caregiving. This literature review
will explain the different types of dementia, describe caregiving and associated
characteristics of formal and informal caregiving, explain dementia caregiving, introduce and
depict characteristics of a northern remote community, and finally explore caregiving in the
context of a northern remote community. Considerations will be given to outlining services
related to dementia care in the region, and the effects of caregiving on formal and informal
caregivers' physical, emotional, social, and cognitive health in the context of a northern
remote community.
Dementia
Alzheimer's disease is the most common form of dementia, with vascular dementia
being the second most common. Alzheimer's disease currently represents 63% of all
dementias and is an irreversible and complex disease that affects individuals differently
(Alzheimer Society Canada, 2010). Symptoms of Alzheimer's disease may include: memory
loss affecting day-to-day functioning; difficulty performing familiar tasks; problems with
language; disorientation of time and place; and sometimes loss of initiative (Alzheimer
Society BC, 2009). There is speculation regarding etiology of Alzheimer's disease, but at the
present time, the only consistent factor in diagnosis is that it is most prevalent in those 65
years and older (Morgan, Semchuk, Stewart, & D'Arcy, 2002). This is not to negate the less
common cases of early onset Alzheimer's disease that have occurred around the ages of 35 to
55 years (Interior Health Authority, 2010). The progression of Alzheimer's disease has three

Dementia and Northern Caregiving

13

stages: early (mild), middle (moderate), and late (advanced) (Alzheimer Society BC, 2009;
Harris, 2010).
Vascular dementia is a degenerative cerebrovascular disease that presents as a decline
in memory and cognitive functioning. Vascular dementia is also referred to as multi-infarct
dementia, and the cause is typically multiple "mini strokes" which cause a block in the blood
supply to the brain. Sometimes vascular dementia causes a loss in functioning to specific
areas of the brain, impairing some neurological and mental functions and not others. When
vascular dementia occurs with other types of dementia, such as Alzheimer's disease, it is
known as mixed dementia. Vascular dementia generally affects people between the ages of
60 and 75, and affects more men than women (Help Guide, 2010).
There are two other classifications of dementia: dementias that arise due to medical
conditions or multiple etiologies and substance-induced dementia. Dementia due to a
medical condition or multiple etiologies may include: a dementia associated with HIV, head
trauma, Parkinson's disease, Huntington's disease, Pick's disease, Creutzfeldt-Jakob Disease,
and mixed dementia. Diagnosis requires evidence from the individual's life history, a
physical exam, and appropriate laboratory tests (American Psychiatric Association, 2000).
Depending on the medical condition, the progression of these dementias has the potential to
be acute, sub acute, or chronic. The diagnosis also depends on severity of the pre-existing
medical condition and the individual (American Psychiatric Association, 2000).
Substance-induced persisting dementia results from long term exposure to one or
more substances (i.e., alcohol or drug abuse). Substance-induced persisting dementia or
Wenicke-Korsokoff dementia is challenging because of the complexities of abuse and mis­
use of alcohol and drug related substances (American Psychiatric Association, 2000).
Dementia not otherwise specified (NOS) diagnosis is designated in cases where a clear

Dementia and Northern Caregiving

14

reason for the dementia cannot be determined (Help Guide, 2010). The diagnosis is also
given when the individual presents with no classic criterion according to the DSM IV
(American Psychiatric Association, 2000). Although there are differences when it comes to
criteria for a specific diagnosis, similarities appear amongst symptoms.
Some of the similarities amongst dementia related diseases can include: spatial
disorientation and difficulty with visuospatial tasks, poor judgment and insight on present
abilities (e.g., working; following through with plans), little or no awareness of existing
memory loss, taking unusual risks (e.g., driving), demonstrating dis-inhibited behaviours
(e.g., inappropriate jokes or reactions to situations), disturbances in mood (e.g., changes in
personality such as increased anxiety), becoming easily stressed by environment and
surroundings (e.g., by tasks such as going to the doctor or the hospital) and finally, sleep
disturbance (American Psychiatric Association, 2000).
The type of dementia an individual is diagnosed with will determine the care required
(Hamdy, Turabull, Edwards, & Lancaster, 1998). The impact on family members, friends,
and formal caregivers is correlated with the type of dementia and available resources. The
care for a person with dementia is as unique as the individual and may be provided by a
variety of people. This care is referred to as caregiving.
Caregiving
Caregiving is a widely used term that typically involves dynamic relationships
between individuals. To "care for" is typically used to describe an action or bond between
two or more people and often used in referenced to children, parents, friends, spouses, or
relatives (Jansson, Nordberg, & Grafstrom, 2001). Caregiving in the context of this study is
defined as support provided to an individual 65 years or older experiencing dementia.
Support is provided because the older person's health has deteriorated and living

Dementia and Northern Caregiving

15

independently has become a challenge (Yap, Seow, Henderson, & Goh, 2005). Typically,
caregiving over a prolonged period of time can result in a range of impacts such stress
physical exhaustion, personal rewards, joy and satisfaction.
In 2006, people aged 65 and older represented 14.6% of the population in British
Columbia (Wister, Sixsmith, Adams, & Sinden, 2009). On the whole, the percentage of
BC's population aged 65 and older has been greater than the national average of 13.7%
(Wister et al., 2009). The aging Canadian demographics suggest an increase in the percentage
of the population in the 65 plus category, resulting in a predictable need for caregivers, both
formal and informal (Wister et al., 2009). According to Wister et al. (2009) individuals aged
65 years or older typically provide unpaid caregiving for one or more seniors. The
Alzheimer Society BC (2009) defines a caregiver as "the individual or group of individuals
who are involved in the life of individuals with dementia and who provide for their personal
care needs and support throughout the journey of the illness" (p. 157). In the prognosis or
progression of a dementia related disease, the caregiver's role often changes. In order to find
normalcy in this transition, the caregiver must learn throughout the prognosis or the
progression of the disease, accepting the change while attempting to maintain self care and
balance (Furlong & Wuest, 2008). Montgomery and Kosloski (2009) discuss three important
issues for caregivers that reflect the uniqueness of each caregiver's situation. Specifically
caregivers feel different pressures related to their situation, experience different issues related
to their caregiving role, and have different relationships with the care receiver. Kemp, Ball,
Perkins, Hollingsworth, and Lepore (2009) refer to the relationship between the caregiver
and the care receiver as the catalyst for either a positive or negative experience.
Too often, caregivers are affected by limited resources and a sense they have little
authority to speak out for help or change with respect to service provision (Heinonen &

Dementia and Northern Caregiving

16

Spearman, 2006). Changing the way caregivers access services and financial resources will
ultimately change how caregivers provide care to an individual living with dementia. In
order to better understand the situation faced by these caregivers, it is important to identify
and describe two types of caregivers, formal and informal caregivers.
Formal Caregiving
Formal caregiving is defined as trained and/or paid caregiving by a professional
(Chappell et al., 2008; Montomery & Kosloski, 2009). Formal caregivers may be associated
with professional bodies such as geriatric specialists, nursing, and social work; alternately,
they maybe care aides, or home support workers. Formal caregiving is often provided in
hospital settings, residential living or long term care settings, through public health or
specialist referrals, and community care or respite services. Community care and respite
services are a form of formal caregiving which is planned and/or temporary relief for a
family caregiver (Your Health Guide, 2009; Northern Health, 2008c). There are four
different forms of formal caregiving with community care services provided through
provincial health authorities in BC: 1) adult centered day care; 2) in home or Home and
Community Care services; 3) respite care; and 4) residential care (Gottlieb & Johnson, 2000;
Montgomery & Kosloski, 2009; Your Health Guide, 2009).
Adult day programs and respite services are designed to provide recreation and
leisure, bathing, meals, and socialization for individuals with dementia or other complex
health conditions (Jarrott, Zarit, Berg, & Johansson, 1998; Your Health Guide, 2009).
Community-based services are designed to provide formal care for an individual who meets
the criteria. Adult day programs are normally offered Monday through Friday nine to five, at
the expense of the individual, or are subsidized for those who qualify (Your Health Guide,
2009). Home and Community Care services provide in home care and are designed to assist

Dementia and Northern Caregiving

17

people with chronic health concerns to remain safe and independent in their own home
(British Columbia Health Coalition, 2012). Home and Community Care provides home care
nursing (e.g., wound care and health status monitoring), home support (e.g., meal preparation
and bath assist), and social work and rehabilitation services (e.g., physiotherapy and
occupational therapy). Institutional respite may be set up to provide brief temporary care
(e.g., caregiver taking a holiday, experiencing a family crisis, or becoming temporarily ill
themselves) (Gottlieb & Johnson, 2000). Residential care provides 24-hour supervision,
personal nursing care and/or treatment by skilled professional staff, when an individual is no
longer able to live in the community with existing community resources and support.
Residential care may be referred to as multi-level care, extended care, intermediate care, or
complex care and is provided by both the private and public sectors (Province of British
Columbia, 2007).
Historically, the responsibility of caregiving for individuals with dementia has largely
fallen to professional and community-based services provided by health authorities.
According to Yaffe (2008), the increasing shift in responsibility onto the families or friends
of individuals with dementia is referred as 'care by community'; alluding to the notion that
care provision is not only a professional responsibility, but a family responsibility.
Informal Caregiving
Informal caregiving is defined as care provided by an individual who may be a family
member or friend, who has no formal training and/or who is not paid (Alzheimer Society BC,
2009; Chappell et al., 2008; Harris, 2010; Montgomery & Kosloski, 2009). Jasson et al.
(2001) suggest that informal caregiving for an individual with dementia is a unique and fulltime responsibility. Typically an informal caregiver manages many roles (e.g.,-full-time or
part-time employment, their own family life, or working as a volunteer) and still manages to

Dementia and Northern Caregiving

18

take responsibility for personal planning, decision-making and household planning for the
individual for whom they provide care (Harris, 2010; Wiles, 2003). Between 80 and 90
percent of care for the elderly is provided informally by friends and family members.
Women represent a large portion of all informal caregivers, and are often a spouse or
daughter of the person receiving care (Bedard, Koivuranta, & Stuckey, 2004; Gender and
Health, 2008; Jones & Meisen, 1993; Navaie-Waliser, Feidman, Gould, Levine, Kuerbis, &
Donelan, 2002).
The extent of informal care is measured in the number of hours of care provided.
According to the Rising Tide Report, the number of informal care hours provided in Canada
was 231 million hours in 2008 and is projected to increase up to 756 million hours by 2038
(Alzheimer Society Canada, 2010). Seven million households in the United States of
America are providing care to an individual, and 18.5 million households are providing
unpaid care to someone aged 50 years or older (Koerin, Harrigan & Secret, 2008). In
Canada, 80 percent of caregiving involves unpaid care for an individual with long term health
condition (www.hrsdc.gc.ca/eng/cs/comm/sd/caregivers.shtml). A survey conducted in 2002
found 23 percent of Canadians aged 45-64 provided care to seniors and of those 70 percent
were also employed. On average, Canadians are providing 23 hours of informal or unpaid
caregiving per month, with the majority of hours being provided by women
(www.hrsdc.gc.ca/eng/cs/comm/sd/caregivers.shtml). Informal caregiving impacts a
caregiver's life. In the last three decades, there has been an increase in the number of
individuals and families assuming the role as a caregiver for their aging friends or family
members rendering both challenging and positive experiences (Rhee, Degenholtz, Lo Sasso,
& Emanuel, 2009). Challenges when providing informal care for an individual living with
dementia may include: the loss of relationship between themselves and the care recipient,

Dementia and Northern Caregiving

19

loss of customary social interaction, lack of closure on a variety of relationship issues,
decline in the informal caregiver's physical and mental health, and loss associated with
institutionalization of the care recipient (Jansson et al. 2001; Navaie-Waliser et al., 2002;
Sanders & Corley, 2003; Vernooij-Dassen et al., 2000; Wuest, Ericson, & Noerager, 1994).
Feelings of worry, grief, relief, guilt, a sense of emptiness, and loss of purpose can also be
experienced by informal caregivers along with stress, burden, and depression (Ebenstein,
2004; Montgomery & Kosloski, 2009; Podgorski & King, 2009). Complexities with a
caregiver experiencing stress, burden, and/or depression may be impacted by: issues directly
related to providing care for their loved one, the dynamics of the relationship, and social
supports available to them as an informal caregiver. In order to maintain dignity and respect
of an individual with dementia, many informal caregivers internalize and isolate their
emotions which can lead to stress, burden, and depression (Alzheimer Society Canada, 2010;
Carpenter & Mak, 2007; Wiles, 2003). There is a significant amount of literature focused on
caregivers' experiences with stress, burden, and depression, including screening tools to help
professionals and individuals predict breaking points (Annerstedt, Elmstahl, Ingvad, &
Samuelsson, 2000; Papastavrou et al., 2007). As a result of providing care, informal
caregivers may experience a poorer quality of health, and can have a higher risk for other
health related conditions than those for whom they are providing care (Butler, Turner, Kaye,
Ruffin, & Downey, 2005; Navaie-Waliser et al., 2002). Therefore, informal caregivers need
to be aware of the possible health related factors associated with caregiving.
Stigma is commonly referred to as judgment and/or assumptions made by peers,
community or society. Informal caregivers may struggle with the acceptance of the diagnosis
of dementia because dementia is commonly associated with the stigma of mental illness or

Dementia and Northern Caregiving

20

cognitive loss (Morgan et al., 2002). The effects of stigma can lead to secrecy, shame, family
tension, and result in silence and isolation from support (Alzheimer Society BC, 2009).
Beliefs and attitudes around caregiving depend on the person and the situation.
Experiences associated with informal caregiving can be positive leading to feelings of love,
pride, and a sense of personal accomplishment when caring for a loved one (Boerner, Schulz,
& Horowitz, 2004; Chappell et al., 2008; Ellis, Miller & Given, 1989). Positive experiences
occur and may be associated with caregiver self esteem, wellbeing, and coping strategies
(Robertson, Zarite, Duncan, Rovine, & Femia, 2007). Positive aspects of caregiving are
clearly mentioned in connection with positive family or community appraisal, personal
satisfaction, family perceptions of caregiving, and with end of life (Boerner, Schulz, &
Horowitz, 2004; Chappell et al., 2008; Robertson et al., 2007). An informal caregiver's
health and wellbeing impacts the positive experiences they may have providing care as does
their ability to cope and utilize coping skills (Robertson et al., 2007). The personality of a
caregiver may also be an underlying factor that affects the coping capacity and results in
one's ability to provide care to a loved one with dementia (Chappell & Dujela, 2009).
Dementia Caregiving
The complexity of dementia caregiving may involve different interventions (e.g.,
medication, community services, and housing), professional involvement (e.g., nurse, social
worker, and geriatric specialist), and non professional involvement (e.g., spouse, family
member, and neighbour) (Harris, 2010; Kemp et al., 2009). Rauscher, Lane, Oickle, Ooms,
van der Leer, Rawnsley, et al., (2007) outline a set of core values and principles in the
Dementia Service Framework (DSF) as the standard for providing dementia care. They
suggest core values including: self-determination, value and respect for the person,

Dementia and Northern Caregiving

21

compassion, and integrity; while principles include: person-centred care, consultation with
caregivers, person-centred system design, and care provider competencies.
Providing care for an individual living with dementia involves attempts to preserve
independence and dignity, maintain cognitive abilities and delay cognitive loss, provide
individualized care, and assist with the quality of life of the individual (Harris, 2010). The
progression associated with a dementia-related disease can affect family dynamics, family
structure, and relationships depending on the type of dementia and the level of care required
by the individual (Prince, Acosta, Albanese, Arizaga, Ferri, Guerra, et al., 2008). There
appears to be an increase in the number of individuals living at home with dementia with a
family member providing care (Alzheimer Society, 2010). However, there tends to be no
increase in the resources or services for caregivers. By the year 2038, 60 to 69 percent of
informal care will be provided to an individual living with dementia by a family member
(Alzheimer Society, 2010). These projected figures forecast a potential shortage of trained
formal caregivers and limited resources for informal caregivers. With the increase in the
number of caregivers by 2038, there is still much to discover when it comes to the specifics
of dementia caregiving.
Researchers know relatively little about the day to day activities that we call informal
dementia caregiving (Jasson et al., 2001; Montgomery & Kosloski, 2009), especially in
northern remote settings. Dementia caregiving may involve assisting with an individual's
activities of daily living (ADLs), such as bathing, dressing, and meal preparation and/or
instrumental activities of daily living (IADLs), such as household chores (Harris, 2010;
Jansson et al., 2001; Montgomery & Kosloski, 2009). Dementia caregiving may involve
planning in the following areas: financial, will and estate, health care and end of life planning
for the person with dementia. Providing care for an individual with dementia involves

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22

incorporating various tools, skills, and strategies for formal and informal caregivers
including: establishing routine, supporting independence, avoiding confrontation, simplifying
tasks, improving safety, keeping active, communicating, and utilizing memory aids all while
maintaining dignity of the individual (Alzheimer Disease International, 2004; Carpenter &
Mak, 2007; Jones & Miesen, 1993; Montgomery & Kosloski, 2009; O'Connor, 2007; Paun,
Farran, Perraud, & Loukissa, 2004; Robertson, Zarit, Duncan, Rovine & Femia, 2007).
Dementia care can be dynamic; at times individuals living with dementia may require
assistance to become aware of their surroundings and at other times, they may appear lucid
and coherent.
From a formal caregiver's perspective, dementia caregiving requires a case by case
assessment to determine the type, style and level of care an individual might require (Harris,
2010). An informal caregiver's perspective of dementia care will not necessarily be outlined
nor guided by the style, type, or intervention level and may be described as a family role,
duty, or responsibility. Dementia caregiving is challenging to describe due to the varying
factors in each person's situation including their physical location to family, friends,
community, health professionals, health resources; an urban or northern remote context; and
current health policies.
Setting the Stage for a Northern Remote Community
The northern remote context differs from the urban context. The terms northern,
remote, and rural often tend to be used inter-changeably to describe geographic location,
population density, and access to services or resources. Part of the challenge in defining
northern remote and rural community is the complexity associated with aspects such as the
nature of relationships, connectedness, cohesion, and community membership. This section
will explore the definition of northern remote and rural community, highlight the

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characteristics of relationships (personal and professional) and membership within a northern
remote and rural community, discuss caregiving in a northern remote community, and
conclude with resources that are specific to the Northern Rockies District.
In the United States of America, the terms rural and remote tend to be used in the
context of farm land or countryside (Ginsberg, 2005; Zapf, 2002). In Canada, the terms
northern and remote are often associated with hinterland or small populations residing in
scattered locations across a vast distance from an urban setting. An urban setting tends to
refer to a population density of 15 000 or more (Zapf, 2002). Northern remote communities
are defined by populations of 10 000 or less or 150 people per square kilometer and often are
removed from larger urban services and resources (Public Health Agency of Canada, 2007;
Sutherns, 2002). Nine million Canadians, approximately 30 % of the total population, and
20% of the total working population, live in northern remote communities (Public Health
Agency of Canada, 2007; Sutherns, 2002).
Geographical location and northern remote environments directly influence an
individual's health (Nagarajan, 2004; Smith, Humphreys, & Wilson, 2008). Schmidt and
Klein (2004) discuss the northern context as it pertains to barriers or lack of access to
services due to remoteness, isolation, and personal hardship. It is a challenge to define the
"northern" context due to Canada's land mass, and the vast distances between many of its
urban cities not to mention between its townships. This only adds to the difficulty when
defining the terms remote, isolated, and describing the personal hardships felt by individuals
residing in the North (Collier, 2006; Humphreys, 1998; Nagarajan, 2004; Skinner et al.,
2008; Zapf, 1993). On the other hand, a unique characteristic of a northern remote and rural
community is its "close knit" quality or "sense of community" as felt by members through
their community membership, relationships, and commonalities (Hughes, Black, Kaldor,

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24

Bellamy, & Castle, 2007). Relationships tend to impact the development of resources and
services within both the public and private sector. Industry also influences the lives of
individuals living in northern remote communities.
Northern remote communities in BC are often resource based single industry towns
with fluctuating boom and bust cycles; whereas metropolitan areas normally do not
experience the same type of fluctuation (Sutherns, 2002). The boom and bust cycle impacts
population density and service provision in northern remote communities given that current
funding allocations tend to be based on population density rather than on the needs of the
population. With the aging "baby boom" generation - and thus an increase in the number of
older persons residing in northern remote settings, there is an ever greater need to understand
the connection between dementia and caregiving in the northern remote context.
Caregiving in a Northern Remote Community
It is critical to understand caregiving in the context of living in a northern remote
community in order to better meet the needs of both formal and informal care providers.
Strengths and challenges arise given the pre-existing relationships, dual relationships, and
types of community membership that exist within a northern remote community. According
to Scopelliti, Judd, Grigg, Hodgins, Fraser, Hulber, Endacott, and Wood (2003),
professionals within northern remote communities feel a responsibility to participant in a
range of community memberships such as volunteering. Such involvements often ultimately
overlap with other types of relationships, and can lead to professional dilemmas with dual
relationships (e.g., being a formal caregiver for an older adult that you also meet when you
volunteer at the food bank). Issues arising from dual relationships in the life of a professional
can impact caregiving in a northern remote community. Misener, MacLeod, Banks, Morton,
Vogt and Bentham (2008) highlight the value to learning to listen and listening to learn as a

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means of understanding the uniqueness of a community, culture and workplace.
Understanding the unique characteristics of a northern, remote and rural community together
with pre-existing relationships and multiple memberships in the community enhances one's
capacity to tackle challenges faced while caregiving.
Specific issues faced by formal and informal caregivers in northern remote
communities discussed within the literature relate to staffing formulas, overall health of
northern, remote and rural populations, and the limited planning for aging within northern,
remote and rural communities. Staffing formulas, service provision and resource allocation
tend to be based on population density and urban/southern funding and staffing formulas
(Hemingway, 2010). In northern, remote and rural communities there is more limited access
to health care and other related services. Coupled with access issues, urban/southern funding
and staffing formulas only serve to compound the challenges already associated with
dementia care and both formal and informal caregiving in northern remote communities
(Hemingway, 2010). With uncertainty in the literature identifying the needs of caregivers in
northern remote communities in BC, the use of urban/southern funding formulas and staff
ratios for service provision, and the change in population demographics of northern remote
communities in Canada; it is crucial to better understand caregiving and the needs of
caregivers in northern remote communities.
Given the increase in the rates of dementia, related services and planning for an aging
population needs to occur in Canada. Morgan et al. (2009) discuss factors that contribute to
the need for improved access to dementia care in rural and remote settings and identifies
limited diagnostic services and under-serving of special-needs groups (e.g., seniors) as areas
of concern for northern remote communities in Canada. In BC, dementia care has been a key
health authority agenda item since 2007. However, the realities of northern BC are that many

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towns have populations of 1 000 to 10 000 people living 400 km or more from a larger city
centre. Many of the towns are based on natural resource economies that fluctuate in size and
economic prosperity over time, along with challenging climate (BCNAR, 2008). Realities
of aging in a northern remote community in BC include: limited access to service, limited
care for caregivers, inadequate support for housing, limited home support, and lack of
rehabilitation services (BCNAR, 2008). Similar challenges exist with respect to dementia
care related services and caregiving. Limited access to service whether for respite or home
care/support, rehabilitation services, or self care for caregivers all impacts a caregiver's
ability to provide care for an individual living with dementia.
Caregiving and Dementia Related Services in the Northern Rockies District
Caregiving and related dementia care services in the Northern Rockies District are
provided through the Northeast Health Delivery Services Area (HSDA) of NH. There are
limited services in the Northern Rockies District associated with caregiving and dementia for
both formal and informal caregivers. The services being offered in the Northern Rockies
District by Northern Health include: a six bed multi-level care unit within the Hospital, an
adult day program that is offered two days a week through the Hospital, and a Public Health
Unit that supports seniors with Home and Community Care programs such as home nursing
care, home support services, long term care, flu clinics, mental health services, and any adult
protection concerns with respect to the neglect, self neglect, and abuse of seniors (Save Our
Northern Seniors, 2009). In addition, consultation with social work, occupational therapy
and dieticians from Fort St. John is available through Home and Community Care services.
On an as need basis, specialized geriatric services (e.g., pyschogeriatrician) can be arranged
through Long Term Care Manager and local physician referral.

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There is one senior's community centre, providing enjoyment through recreation
activities (Save Our Northern Seniors, 2009). The Northern Rockies Seniors Society (NRSS)
supports the needs of seniors living within the Northern Rockies District by filling identified
gaps in service and undertaking initiatives related to transportation, housing needs,
recreation, and socialization (Save Our Northern Seniors, 2009). Currently, there is one
senior's independent living apartment building located in the Northern Rockies District, and
two Aboriginal organizations offering Elders support programs (Fort Nelson Aboriginal
Friendship Society and Northern Rockies Women's Aboriginal Society) (Save Our Northern
Seniors, 2009). In Dawson Creek (about a five hour drive to the South of Fort Nelson), there
is an Alzheimer Society of BC resource centre, which offers support groups and education on
topics such as the early stages and family caregiving. In addition, the Alzheimer Society of
BC offers a number of tele-conference workshops across the province with topics such as:
understanding communication, behaviour, and personal planning.
Conclusion
Along with the entire Canadian population, northern BC has an increasingly large
percentage of adults 65 years and older (Hanlon & Halseth, 2005). In fact, Northern Health
Authority has the fastest growing older adult population in the province (Northern Health
Authority, 2009). Coupled with the Alzheimer's Society of BC (2010) data indicating that
more than 70 000 British Columbians are currently living with Alzheimer's disease or a
related dementia and the projected increasing rates of dementia across Canada, there is an
immediate concern regarding the provision of care. Government cuts in the provision of
formal care coupled with the fact that the hours of informal care provision are expected to
triple from 231 million hours in 2008 to 736 million hours by 2038 make exploring northern
caregiving issues all the more critical (Alzheimer Society, 2009). As one step in addressing

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28

these issues, this thesis research explores the experiences of formal and informal caregivers
of individuals living with dementia in the Northern Rockies District in BC.

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29

CHAPTER THREE
Methodology
This chapter will describe exploratory qualitative research and apply the approach to
the research topic dementia and northern caregiving. I will also describe the research process
and data collection through a focus group with formal caregivers and semi-structured
interviews with informal caregivers. Included are the details pertaining to the process of data
analysis, a description of thematic analysis, and the verification strategies used in this study.
Finally, I will speak to the treatment of data which entails such matters as access to the
transcripts and participant information.
Exploratory Qualitative Approach
An exploratory approach is commonly used in qualitative research as it allows
researchers to connect with people through in-depth interaction exploring rich meanings of
their experiences and thoughts (Gilgun & Abrams, 2002). Exploratory qualitative research is
open minded and flexible, using qualitative techniques to gather data and to build a range of
evidence in discovering new topics, especially when little is known about an issue or a topic
(Singleton, Straits, & Straits, 1993). In addition, exploratory research seeks to find out how
people get along in the setting under question, as well as to give meaning to actions and
issues that concern the people (Schutt, 2006). Using an exploratory approach, a focus group
interview with formal caregivers and semi-structured interviews with informal caregivers
were conducted. The purpose of my research is to gain insight through exploring formal and
informal caregivers' experiences providing care to individuals with dementia in the Northern
Rockies District.

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30

Process
Focus group
According to Neuman (2005), a focus group is an interview based in a groupdiscussion setting. Patton (2002) outlines advantages to a focus group including cost
effectiveness, enhanced data quality through participants' checks and balances, diversity of
views quickly accessible and overall enjoyment for key informants. Typically, the use of
focus groups involves bringing together six to ten people of similar backgrounds and
experiences to discuss issues that affect them (Krueger, 1994; Patton, 2002). I facilitated one
focus group consisting of seven formal caregivers. Shortly after the focus group began, it
became challenging to keep organized notes, attend to the participants needs within the
group, and stay on track with the time. This challenge came as a surprise, as I had expected
the focus group interview to be more straightforward and easier to conduct. As the focus
group proceeded through the questions, I made adjustments to my note taking, attended to the
participants needs, and kept better track of the time for the remainder of the focus group
session. Based on this experience, in the future I would design focus group interviews to
include more than one facilitator in order to ensure the best possible process.
Semi-structured interviews
According to Marlow (2005), "in a semi-structured interview, the interviewer has
more freedom to pursue hunches and can improvise with the questions" (p. 167). The
flexibility within a semi-structured interview format provided me the opportunity to explain
or elaborate on questions, ensuring clarity and opportunity for each participant to fully
explain their experiences. Semi-structured interviews with short open ended interview
questions facilitate the opportunity for participants to give long, data rich and relevant
answers (Kvale & Brinkman, 2009). Another benefit to semi-structured interviews is the

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31

degree to which the interviewer follows up and clarifies the meanings to the answers so there
are no misinterpretations during the interview (Kvale & Brinkman, 2009). Throughout the
semi-structured interviews conducted with informal caregivers, the benefits Kvale and
Brinkman (2009) discussed were reflected in my research experience including the
opportunity to clarify and follow up with each participant after each question, ensuring rich
data and relevant answers. Before conducting the four semi-structured interviews with
informal caregivers, I had two expectations: I thought each interview would take
approximately an hour to an hour and a half; and I thought conducting the semi-structured
interviews would be more challenging than the focus group. In fact, the interview length
ranged from thirty eight minutes to one hour and to my surprise, I was more comfortable and
confident conducting the semi-structured interviews than I was with the focus group.
Personally, I feel the private and intimidate settings where the semi-structured interviews
took place provided both the participant and I with comfort needed to engage in deep
conversation.
Sampling
Given the focus of this research, purposive sampling was used to gather informationrich participants (Neuman, 2005; Patton, 2002; Singleton et al., 1993). Purposive sampling
focuses on seeking out relevant, information-rich participants and can include a number of
different strategies for locating participants, such as personal and organizational contacts.
Snowball sampling was used as a means to enhance the sample size of information-rich
participants, adding value to my research data set (Patton, 2002). According to Mack,
Woodsong, MacQueen, Guest, and Namey (2005), snowball sampling is used to reach
'hidden populations' through participants or informants with whom contact has already been
made and is a method to find and recruit participants not easily accessible to the researchers.

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As a result of purposive and snowball sampling, seven formal caregivers participated in a
focus group and four informal caregivers participated in semi-structured interviews.
Criteria and Recruitment
The criteria to participant in this research for both formal and informal caregivers
included: individuals who are 19 years of age and older; currently or previously working as a
paid (formal) care provider (e.g., Registered Nurse or Social Worker) or as a non paid
(informal) care provider (e.g., spouse, family member, or friend) for individual(s) with
dementia; and living or working within the Northern Rockies District. For the purpose of
this research, no formal diagnosis or assessment of Alzheimer's disease or other related
dementia was required by the researcher. Due to the location of health related and
community based services within the Northern Rockies District, recruitment mechanisms
used to advertise for participation of formal caregivers included two main service providers:
Northern Health and the Northern Rockies Seniors Society. The mechanisms used to recruit
informal participants included Northern Health, Northern Rockies Seniors Society, and
community bulletin boards (i.e., at the post office, grocery store(s), and public library).
This research was conducted over the course of four months. I relocated to Northern
Rockies District and spent two and half months living in Fort Nelson. Accommodations
were provided by my partner's place of employment. I connected with community agencies
and a Northern Health contact to promote the study, confirmed availability of locations for
both the focus group and the semi-structured interviews at the Northern Health facilities in
Fort Nelson (i.e., private meeting rooms). An alternate option was confirmed at the Northern
Rockies Seniors Society. Copies of the posters (Appendix D & G) on coloured paper were
provided in-kind by a contact in Fort Nelson at the local stationary store. Any additional
copies of the letter of introduction, information sheet, consent form, and interview questions

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33

(Appendices A, B, C, E, F, H, K, & L) were provided to me in kind from the Fort Nelson
Literacy Society and the Fort Nelson General Hospital.
First, a package including a letter of introduction, a project information sheet, and two
copies of the project poster were delivered to Northern Health agencies including the Public
Health Unit and Hospital (see Appendix A, C, & D). I assisted at each of the agencies to
display the posters in common areas for formal and informal caregivers. I also put up posters
community bulletin boards such as at local grocery stores (i.e., Overwaitea), the Fort Nelson
Library, laundromat, senior assisted living apartment units, senior centre's, and the post
office. Before displaying the posters at each of the sites I obtained approval from managers.
Participants were encouraged to contact me directly and to my surprise formal
caregivers began to sign up directly on the poster located in one of the staff rooms. Once the
attendance of a minimum of six participants for the focus group was confirmed, a specific
date and time that worked for participants was chosen. A room for the date and time was
confirmed and an additional message was added to the original poster regarding the
confirmed date, time, and location for the focus group; along with a confirmation phone call
to each participant. When an informal caregiver contacted me to participate in a semistructured interview, an agreed date, time, and location was identified and confirmed.
During this four month period, 1 had other commitments in Prince George, and
returned for one month. While in Prince George, informal caregivers contacted me via
telephone and email. I arranged to conduct one focus group interview with formal caregivers
and four semi-structured interviews with informal caregivers for the first weekend in
September. Arrangements were made to fly to Fort Nelson for five days and conduct the
focus group and semi-structured interviews.

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34

Data Collection
Focus Group
The focus group began with an introduction of the researcher, a review of the project
information sheet (Appendix A), a review of the demographic questionnaire (Appendix I)
and consent form (Appendix E). Once participants reviewed all the documents, they were
asked if there were any questions, and no questions were asked. After the consent forms
were signed, the demographic questionnaire was completed by all seven participants, I
explained the following: focus groups procedure; process of a thematic analysis; requested
permission of quotes from the tape recorded focus group; verification of transcripts to ensure
accuracy. The audio recorder was started and the focus group proceeded with the questions
as per Appendix L. All participants had a copy of the interview questions during the focus
group and six participants stayed until the end of the group, while one participant left due to
work duties. The exit of the participant did not disrupt the flow of the focus group
discussion, although, I wondered to myself if others would have to exit for similar reasons.
Semi-structured interviews
Two interested participants connected through phone interaction and two interested
participants made contact through email. I reviewed the information package, consent form,
and explained the demographic questionnaire either verbally or written in an email. The
date, time, and location for the interview were determined by the participant with input from
the researcher. At each interview the following occurred: an introduction of the researcher;
review of the project information sheet; a review of consent form and the demographic
questionnaire; the process of semi-structured interviews; and their right to decline or pass
answering any of the questions and/or to end their participation in the semi-structured
interview at any time. In addition, an explanation of the following was provided: thematic

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35

analysis and the use quotes from the tape recorded semi-structured interview; how personal
information would be removed from the transcript and replaced with a fictitious name; their
right to remove themselves from the research project at any time without explanation or
obligation; and the process of verification through a participant review of the transcript and
themes to ensure accuracy. I asked if the individual had any questions or required further
clarification, started the audio recorder and began with the semi-structured questions
(Appendix L). During each of the interviews, participants had a copy of the interview
questions (Appendix L). In one interview, I navigated through the questions from start to
finish. With the other three interviews I began with the first question and it was through the
individual stories that questions two through eight were answered. To ensure consistency I
reiterated the questions in sequence (Appendix L), summarized, and clarified answers with
individual's stories.
Data Analysis
Thematic Analysis
A thematic analysis, according to Braun and Clark (2006), is an analysis used across
the whole data set. The process includes three steps: identify emergent themes, analyze the
themes, and report the patterns associated with the data. Two approaches to thematic
analysis include inductive and deductive. An inductive approach involves the discovery of
patterns, themes, and categories in one's data set (Patton, 2002). When using an inductive
approach, the themes that emerge are strongly linked to the data and the researcher does not
attempt to "fit" the data into a pre-existing framework. This is otherwise known as datadriven analysis (Braun & Clarke, 2006; Patton, 2002). A deductive approach differs in that
themes are derived within an existing framework and tends to be driven by the researcher's
theoretical or analytic interest in the area (Braun & Clarke, 2006; Patton, 2002).

Dementia and Northern Caregiving

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Thematic analysis also involves an understanding of semantic and latent themes; both
themes can guide the researcher throughout the process of coding. Semantic themes, defined
by Braun and Clarke (2006), are themes identifiable within the surface of the meaning where
the researcher does not look for anything beyond the point of what the participant has said.
Latent themes involve going beyond the surface meaning. For the purposes of this research,
an inductive thematic analysis occurred, identifying semantic themes. The advantage to
using semantic themes is the voices of both formal and informal caregivers remain intact and
the strongest themes emerge from the participants as a collective voice (Patton, 2002).
Process of Analysis
After transcribing the focus group and the semi-structured interviews, transcripts were
read thoroughly to gain a sense of the overall content. Multiple readings of each data set
took place separately in order to focus on each transcript and its individual content. Repeated
words and phrases were recorded on a separate sheet of paper to highlight general
overarching themes as they emerged. A collective word was chosen to describe each
emergent theme and its subthemes, and a colour was selected to highlight examples for each
of the themes and used to identify quotes in the transcripts. Once themes and subthemes
were established, I emailed a copy of the transcript, themes and subthemes to all participants
who indicated willingness to receive these documents on the consent form (Appendix E & H)
as a verification strategy. Two informal caregivers returned an email with support and
approval. To my surprise, no formal caregivers responded. Six weeks passed and I then
assumed support and approval of the data. Once the themes and subthemes from each data
set were established, a second analysis of the themes (formal and informal caregivers) took
place rendering commonalities and differences between the two sets of data. A review of the
themes took place two months later after reflecting on the data. During this time, I reflected

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on the formal caregiver data to find that the themes Facets of Formal Caregiving and
Community came to the fore. In addition, the subtheme relationships emerged from the
broader theme Community. Within the informal caregiver data, the theme Community and its
subthemes changed from access verses isolation and peer support to strengths and
challenges. As a result of this reflection and subsequent amalgamation and rewording of
these particular themes, findings were strengthened and my ability to discuss and present the
data was improved.
This is a worthwhile approach yielding the findings and recommendations central to
the research goals, while at the same time guarding against any accusation the study's
findings are a result of the use of a single method, source (Farmer et al., 2006; Patton, 2002).
I found the reflection process developed my ability to critically analyze my social location,
identify my bias, and present the strongest themes in the data. Throughout the data analysis I
found, not surprisingly, that my own personal experience providing formal and informal care
began to emerge. Journaling on an ongoing basis during the analysis work provided a critical
outlet for processing my own experiences and emotions. Specifically, it helped me to
separate out, as much as is possible, my own experiences and views from those of the study
participants. Finally, this process solidified the importance of qualitative research and the
value of socially locating myself within the research.
Reflexivity and Triangulation
The role of reflexivity in my thesis research was significant. According to Hunt
(2010), reflexivity is "used to describe a researcher's sensitivity to the often subtle ways that
their particular location, experience, worldview, and its assumptions contribute to shaping the
data that is collected and how it is analyzed" (p.70). I am passionate about caregiving and as
somebody who is a formal caregiver and who has the experience of providing informal care,

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it is unrealistic to keep my personal experience out of the research. Journaling throughout
different stages of my research provided the opportunity to reflect and keep my experience
and assumptions in check. In one journal entry, I found myself reflecting back to my
parents' struggle with accessing community resources within an urban setting. In my entry, I
asked myself the question, why do informal caregivers have to be completely burnt out
before services will even respond? And, why is it not a best practice to provide all informal
caregivers with supports? Personally, I am frustrated with how society appears to operate in
crisis mode and, as a professional, this motivates me to advocate for change. The role of
reflexivity in my thesis research includes: being aware of my connection to the purpose of
this research; being accountable to the personal, professional, and academic experience that
may potentially influence the research; and being aware of knowledge I have and its origin
within the context of my own social location within this research (Hunt, 2010; Mays & Pope,
2000; Patton, 2002).
In addition to reflexivity I also used two different sample sources (formal and
informal caregivers) and two different data sources (focus group and semi-structured
interviews) as a means to ensure validity. This strategy represents triangulation. The goal of
triangulation is to enhance the validity of the research by increasing the likelihood that the
findings and interpretations will be found credible and dependable.
As a final strategy to ensure accuracy of the data, I facilitated the opportunity for
feedback from the participants by providing each participant with a copy of the transcript and
themes from research. This strategy was used not only for validity but also to enhance the
trustworthiness of the data and to encourage a more reflexive analysis of the data (Mays &
Pop, 2000).

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39

Treatment of Data
Transcripts and Access to Information
The participants' contact information and all transcripts are kept in my locked, fire
proof safe located at my residence. All information stored electronically has been password
protected. After the thesis is defended and all academic requirements for a Masters in Social
Work have been met, the research documents will be stored for five years. After five years,
the research documents and electronic files will be destroyed by way of shredding any
paperwork and deleting all electronic files. I transcribed the focus group and semi-structured
interviews using fictitious names on all transcribed data to protect the anonymity of all the
participants. 1 emailed a copy of their individual transcript and themes to each participant
(formal and informal) who indicated a desire to received them on the consent form, as a way
to verify and to ensure accuracy of the data. Information from the focus group and semistructured interviews were aggregated to ensure that no potentially identifying information is
disclosed.
Confidentially and Privacy
Every effort to ensure confidentially was made through the following series of
measures. The information from the focus group and semi-structured interviews is
aggregated to ensure that no potentially identifying information is disclosed in the final thesis
document. In addition, some of the examples within participant's quotes were summarized to
ensure confidentially of participants in this study. The location for conducting the research
was confidential for all participants. Confidentiality and privacy have been addressed in the
consent form and verbally reiterated to formal and informal caregivers prior to the focus
group and semi structured interviews. It was explained to both formal and informal
caregivers that the researcher, and the supervisory committee of three UNBC professors (who

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are all obliged to respect confidentiality) had access to the information provided in both the
focus group and the semi-structured interviews.

40

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41

CHAPTER FOUR
Research Findings
The following chapter outlines the results from exploring formal and informal
caregivers' experiences of caregiving in the Northern Rockies District. Included in the results
are demographics of the participating formal and informal caregivers and the emergent
themes and associated subthemes. Quotes from formal and informal caregivers stories and
experiences are used to highlight the results.
Demographics
A demographic questionnaire was designed to gain knowledge and understanding
about the formal and informal caregiver participants who reside in the Northern Rockies
District. The results of the demographic questionnaire are as follows:
Formal Caregivers
Seven formal caregivers completed the demographic questionnaire (see Appendix I).
Four of the formal caregivers identified as Registered Nurses (RN). One participant
identified as a Licensed Practical Nurse (LPN). One participant identified as a Care-Aide.
One participant identified as a retired LPN. Three participants completed some post
secondary education, three participants graduated from post secondary education, and one did
not respond to the question. Six participants currently are employed, four participants are
working full time, two participants are working part time, and one participant is retired. Two
participants identified an income between $25,000-39,000. Four participants identified an
income of $60,000 or more. One participant did not respond. Four participants identified as
living within a municipality of the Northern Rockies District. One participant lives in the
Northern Health Region. One participant lives in rural part of the Northern Rockies District.

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One participant did not respond. Five of the participants identified as Caucasian, one as
British, and one participant as East Indian.
Informal Caregivers
Four informal caregivers completed the demographic questionnaire (see Appendix J).
All four participants are family members of the care receiver. Two participants completed
some post secondary; while the other two participants graduated from post secondary
education. All four participants are currently employed full time with a household income of
$40,000 or more. Three of the four informal caregivers identified as living within the
municipality of the Northern Rockies District, while one participant lives within a First
Nations reserve. Two participants identified as First Nations and two participants as
Caucasian.
Formal Caregivers Results
Participants shared experiences during the focus group discussion and as a result, two
main themes emerged: Facets of Formal Caregiving and Community. Subthemes found
within each theme are listed in Table i.
Table i
Results Formal Caregivers
Theme

Facets of Formal Caregiving

Community

Subtheme

Patient Care

Resources

Communication

Connectedness

Education and Knowledge about Dementia
Facets of Formal Caregiving
The first theme arising from the data is Facets of Formal Caregiving. Participants
described positive and challenging experiences, focusing on aspects related to professional

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43

roles, interacting with patients, families, and other health related disciplines, service delivery,
intervention, and the prognosis of the disease. Stories shared by formal caregivers rendered
subthemes of patient care, communication, and education and knowledge about dementia.
Patient Care. Patient care emerged through positive stories of relief, moments of
joy, and helping to keep patients in the community. One participant reflected on caring for
an individual with dementia and commented: "[patients with dementia] are usually easily
distracted and live in the moment". Another formal caregiver shared: "What I appreciated
about working with anybody with dementia is you create the moment of joy. You might have
a bad ten minutes but the next ten minutes could be awesome".
Formal caregivers described seeing the relief on the families' faces when admitting
their loved one into the hospital: "Seeing the relief on a family's faces because they dealt and
have lived and cared and loved this person for as long as they can". On the other hand,
another formal caregiver discussed seeing the failure on families' faces and recognized the
importance of providing relief for that family: "because they have done everything that they
can". One participant reflected on patient care and having an understanding of the disease
process:
... at that early stage, as there is a lot of resistant, there is a lot of worry and anxiety
between patient and the family and then they are resistant to care. Once they are
closer to the end stage, where they are re-living the moment. That is an easier time to
care for them and for families too.
A participant spoke about the benefits to keeping individuals in the community during the
progression of the dementia and how it improves the quality of patient care:
You know if they stay here in and out of respite or they [are admitted] and stay, at
least the relationship is already established. So that eliminates 90 percent of the stress.
[The client] recognize most of the caregivers anyway. They may not know you by
name but they are familiar with the environment; they know the face. It's vital. You
get more behaviours in an admission somewhere else.

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44

Participants shared challenging stories of staff shortages, limited specialized services
and resources, along with the implications for patient safety due to current resource levels
and climate issues. One participant commented on the challenge providing formal care with
limited staff. She stated: "To treat people and families we need to have more ability to make
the assessment for supports...and be able to say, 'this family needs this many hours of home
support'". Another participant describes the challenge regarding the shortage of formal
caregivers specifically within the long term facility:
When they need me it's usually when they are sun downing at night and I am busy
putting people to bed. There is only one of me. It's hard when they are going 'help
me' and reaching out their arms. It's hard you are not there for them. So staffing is a
real challenge with dementia patients.
Challenges with patient care and safety of individuals with dementia arose with an
emphasis on the physical structure of current facilities. The group discussed safety and how
it is integral to patient care. One participant stated: "We don't have a locking door system.
Cause if we have a wanderer and we are short [staffed]...that is where we have problems".
One other example provided: "We have limited space for them, you know, usually we have
to put them in their own room, or do you lock them in that room at night?" Yet another
participant commented: "Safety in the community, we have a harsh environment, so if we
have someone who wanders, we had an incident with someone freezing, loosing fingers and
toes just because she got confused".
Communication. Communication emerged as a subtheme with participants
describing communication amongst multiple professional disciplines and specialized
services, and how this further influenced the communication with families and formal
services. Participants discussed a need for consistent communication between
multidisciplinary professionals and with specialized services as ways to enhance services

Dementia and Northern Caregiving

45

within the region. Formal caregivers spoke of limited communication between families and
formal services and how this lack of adequate communication impacts the existing services.
One participant spoke of the inadequate communication between professional services (e.g.
Home and Community Care, physicians, and specialized geriatric services) resulting in the
ongoing challenge with creating a waitlist for specialized services in the region. The need for
specialized dementia services was raised: "I think psychogeriatric [specialist] and a geriatric
consultant [could visit the community] on a more regular basis...or even if [the consult] was a
video conference [style of] case conference".
One participant described a lack of communication among patients, families, and
formal services: "We don't have a family meeting, a meeting for doctors, the physiotherapist,
dietary, people in the community - anyone who cares for this patient should come to this
meeting". From the formal caregiver perspective, success with communication occurs when
all professional disciplines are working together. Another participant commented: "Better
communication between the [professionals], having meeting[s] before [the family and
patient] come in.[The] best case scenario...[is having the] family is on the page, client on the
same page, [and] community doctor's on the same page."
Education and Knowledge of Dementia. Education and Knowledge of Dementia
emerged throughout the discussion as a way to enhance abilities to provide care to an
individual with dementia, as well as to enhance opportunities to share knowledge and
information with family members about the disease and diagnosis. A formal caregiver called
for greater educational opportunities for professional staff: "More continual education on
[dementia]. I think we are a little lacking on it. There is all kinds of excellent things out
there". One other participant commented on the current educational opportunities: "There is
tons of online stuff, and Northern Health stuff is pretty good ... and [the] in-services on

Dementia and Northern Caregiving

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dementia... there is online training [modules through] E-Learning, and the dementia journey.
Not a lot of people have accessed it". Satisfaction with regional community services and
educational opportunities was expressed by one participant: "There is one lady who comes
from Dawson Creek. She comes up for brain health, she is phenomenal".
Another participant commented about the educational opportunity for patients and
families: "Education comes from the health care providers". A challenge related to education
and sharing information with families regarding an early diagnosis was shared: "A family
recognizes that something is wrong... the diagnosis should have happened two years ago. By
the time they get there the family is already at a crisis". Further reflection by one participant
highlights the need for education for health care professionals: "We need to get on with it. It
is also the care providers in this town, with limited knowledge". Another participant referred
to preventative healthcare versus reactive health care and how education is the key to
preventative healthcare: "We are always reacting to everything. Everything in health care is a
reaction or a band-aid. We are not getting to where we need to be".
Community
Caregivers discussed strengths and challenges living and working within a small
community in the Northern Rockies District. Strengths and challenges varied depending on
the experience of the formal caregiver and revealed a relation between the community and
formal caregivers. Three subthemes highlighting the strengths and challenges for caregivers
are: Resources, Connectedness, and Relationships.
Resources. Positive experiences related to Resources focused on the ease of access
to local community services, safety, and support felt within the local community. One
participant described a positive story in which the ease of access to community services
resulted in the safety of a patient. She indicated that patient with dementia, wandered away

Dementia and Northern Caregiving

47

from a respite stay at the hospital. The formal caregiver stated: "It's a safer community. We
have had examples if someone is wandering and they are lost, someone brings them back or
they know who to call because they recognize [the patient]". At the same time, formal
caregivers shared examples of the limited specialized resources available (e.g., housing,
facility care, meals on wheels) and how isolated the community is from specialized geriatric
professionals. As one participant put it:
In the community, there's just tons of lack of support. The only respite is a hospital
admission, depending on how busy they are or what kind of behaviours we are
dealing with. So if it can't be here, often the family will not choose to do respite in
Fort St John or Dawson Creek. That's not what they want, and so they will cope.
Another challenge discussed in relation to community and resources was the need for
appropriate housing, or facility placement. One participant stated: "Facility placement, we
just don't have anything. The only options in this community are the hospital or leave the
community". Another participant further elaborated:
Realistically... we could just do a better job if we had all the supports in place.
Families could stay in the home longer. [Currently families] manage without home
support, respite time, without even meals on wheels ...they have to seek facility care
sooner than they need too.
The lack of resources emerged as a challenge many times throughout the focus group
discussion. One participant shared: "We don't have meals on wheels to offer to people". Yet
another commented on the home care and not knowing how to better support the community:
"I don't know how to come to [a] solution without support, even more home support, and
even another case manager would help... and a social worker would help". Another
participant provided an example of what she commonly faces in the Northern Rockies
District - a single male client who has worked and resided in North for the last twenty years
with limited, if any, family contact. He has complicated health issues and is now aging. It

Dementia and Northern Caregiving

48

has been brought to her attention by a local business there may be a risk of financial abuse
occurring. She continued with:
If I go to Public Guardian and Trustee of British Columbia [with a financial situation]
they will ask about family. Well, that becomes a real social work issue. We don't
have a social worker...A social worker would make a huge a difference helping
people with Power of Attorney and Representation Agreements and helping people
with Public Guardian and Trustee of British Columbia issues.
The connection with resources and specialized services in the community was another
critical aspect of group discussion. Not surprisingly, formal caregivers favoured the idea for
more resources within the community; specifically specialized services coming into the
community to assess and diagnose dementia. One participant stated:
We don't get an early enough diagnosis...1 think it's easier [for a geriatric specialist]
to come from [out of town] into our community. I know the general physicians have a
history but the geriatric [specialist]... can come and [diagnosis] the patient.
One more participant expressed concern about the lack of "early diagnosis" and stated: "Well
[specialist] come to Fort Nelson once a year, [and] if we are lucky and we have only three
clinics... They come out of Vancouver [and] they are having challenges finding and keeping
doctors to come on outreach clinics."
Connectedness. Both positive and challenging experiences were shared in the focus
group with regards to being connected in the community to local business and community
groups. One participant's positive experience with connectedness was centered on the staff
at the hospital: "Our hospital has staff has been [living and working in this community] for
20 plus years... so a lot those patients also know us [from other roles within the
community]." A positive experience focused on the connections with local shops,
businesses, and financial institutions and how a financial institution got in touch with formal
services to alert them of a change. She stated: "I got a call from the bank about a client that
is seemingly having a lot of confusion around their finances.'' At the same time, another

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49

participant pointed out that care providers don't always know clients, even in a small
community. "The first time [you meet the] dementia patient, you might be the home support
worker, and you are there to do their personal care." Having a stranger provide personal care
can be uncomfortable for both care provider and care recipient.
Relationships. This subtheme emerged and revealed a link between formal
caregivers' experiences, the community and its connectedness. One participant provided an
example of how the pre-existing relationship impacted the service provision: "We are a small
facility and a small town. We get to know that patient and the families, and you know their
history and you become a part of the family." Another participant stated: "I like
[relationships] because [patients] are very familiar to us because it's a small community [and]
because you know the background and the family, and then you know [the patients] nature. If
they get irritated, you know their interests."
The formal caregivers provided examples of how the relationships impacted their
work and service delivery. One participant described the impact of formal caregiving as
more than just nursing care: "All I am doing is a blood pressure and a chest assessment, but
really what I am telling her once in a while is 'you are doing great' so she can carry on for a
bit longer."
A focus of the discussion was on relationships and the notion of belonging and
membership in the community. There was an emphasis on the perceived need for "a certain
type of person" to be working and living in the community, not only for a client with
dementia but for the good of the entire community. One participant stated: "You need a
certain type of person to be gentle and loving with the elderly and be interested]." This
caregiver felt that having this "gentle" approach played a role in a way to enhance the
experience with formal caregiving and connection with elderly patients.

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Informal Caregivers Results
Unique stories shared by informal caregivers in the semi-structured interviews
resulted in four themes, each with associated subthemes. The themes and subthemes are
presented in table ii.
Table ii
Results Informal Caregivers
Theme

Community
and Networks

Communication

Caregiving and
Dementia Resources

Personal Experience of
Informal Caregiving

Strengths

Family-Based

Informal

Spirituality

Challenges

ProfessionalBased

Formal

Personal Growth

Emotional Side to
Caregiving

Community and Networks
Caregivers frequently shared stories of strengths and challenges related to providing
care in a small northern community. Often participant stories and experiences referred to the
support they felt through local networks of people and the accessibility of support and health
related resources. Community and Networks also rendered challenges related to geographical
location, limited resources, and confidentiality.
Strengths. One participant discussed her experience and stated: "There are such
fabulous things going on in this town and fabulous people...I could just go and see my mom
even when she was at home, the ease of doing something like that in a small community".
Being a small community impacted many participants' experiences with providing care to a

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51

loved one with dementia. One other participant provided an example of the strength within
the community:
Your support group becomes people that you never knew they were there... someone
sees you in Overwaitea that you know, everybody just gives you a hug and asks about
your mom and I honestly believe this community as whole made this [dementia]
journey with us.
One participant elaborated on how the community impacted her mother: "[when it] comes
down to a small community... she never felt that she didn't belong, even at her worst".
Participants discussed how the support was felt throughout the community and its networks.
The following example was shared by one family caregiver:
I realized the support from other human beings is just unbelievable; you just can't put
a measure on it.. .1 had people cooking and making homemade soup for my mom and
dad and you become a little network that have the same experience.
Another participant discussed strengths of the community, especially with regards to
local services: "Thank goodness that it is a small community, that is a bonus because really,
confidentiality wise, didn't have to do that for me, but because we are a small community
and he knows me and mom and you know he sees these things going on." An example
shared of the strength within a small northern community compared to a larger centre: "To be
up north, you make up your own rules. We are pretty resilient."
Challenges. On the other hand, participants discussed challenges with the
community's location and services. One participant discussed the challenges faced with
geographical location and stated: "[people would say] just do this or just do that or just call
this number or just, you can't just do anything in [this community]." Discussion of
specialized services for individuals with dementia came up throughout the interviews. For
example, one caregiver described an experience with the initial assessment of a loved one
and needing to travel to another town, spending the night, and the travel back home;

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incurring the cost of 900 kilometers of travel, a night in a hotel, and time off work. Yet
another participant highlights the challenge with access to community services, especially
limited facility care and the process for admission. The participant shared an experience
moving the family member out of the community: "[the move] was really really hard
because he was so far away we couldn't see him regularly." The caregiver continued to
describe the challenges due to limited specialized services: "We [the family] thought once he
got a little better, and when he wasn't so mobile that they might be able to bring him home."
Another participant described their family struggle with the lack of specialized
services in their community. In particular, the caregiver spoke of how difficult it was to be
five and half hours away and the impact on her father with regards to his culture: "My dad
grew up on the land...he was eating food that he wasn't used to eating, interacting with
people that he is not used to." A participant spoke to this challenge and about the lack of
options or choices for care and support: "You're really kind of stuck with yourself and it's
really difficult."
Participants felt the lack of confidentiality within the community and the closeness of
the networks for support was not always helpful. One caregiver commented regarding the
lack of anonymity: "In a small town there is not a lot of opportunity to go and have coffee at
those support groups... I travel out of town and I would go to one of those [support groups],
the anonymity was total". Although the closeness of the networks within the community
may have been too much for some participants, still the need to continue support for others in
a similar situation was apparent. One participant explained:
I wish I would've reached out a little more to other people because we weren't the
only family that were going through this. Personally I felt like I was the only one and
our family was the only family going through it and that's not the case because there
are so many families that have gone through the same and that are going through the
same thing.

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Communication
Caregivers shared the importance of communication and described experiences of
communication amongst family members and with professional services rendering two
subthemes family-based and professional-based communication. Stories and experiences
shared by caregivers related to style of communication, the diagnosis of dementia, roles of
caregiving, and professional services. Some stories were about positive experiences. Others
identified challenges.
Family-Based. When speaking about communication among family members (i.e.,
siblings and/or children) participants highlighted methods of communication, types of
services, and typical day to day communication between caregiver and family members about
the care receiver. One caregiver described using the internet to share emails with family
members to update them about the individual with dementia as well as about her own
experiences providing care: "We kept them all good and bad, sad and funny and so they got
to experience through me." She described this communication between family members as
beneficial for all members of the family. Another participant spoke about the in-person
communication between family members who lived in close proximity to one another: "I
think the [fact] that there is two of us... is a huge help as well... [it] is a positive thing
because if I was on my own with caring for them it would be huge."
Participants also expressed challenges when communicating with family members
living outside the Northern Rockies District. One participant stated: "I had other siblings that
didn't live in Fort Nelson and they didn't understand what we were dealing with on a daily
basis." Another participant stated: "There was a lot of tension in the family; it could have
easily torn our family apart." Yet another caregiver shared an experience and stated: "My

Dementia and Northern Caregiving

54

brothers and sisters, they never saw the twenty four hour thing...I guess once the family all
realized what he was going through, it pulled us together."
Communication specific to the interaction between informal caregivers and
individuals with dementia also emerged from the interviews. One participant explained:
"Sometimes you feel pretty backwards telling them what they shouldn't be doing...she might
have days when she doesn't recognize me and she has days when she does." A participant
highlighted a positive experience involving communication with her loved one, where the
caregiver was able to realize that her loved one enjoyed a change in music. "I found out
[she] liked techno music." Another caregiver gave an example of communication with a
loved one; specifically, the caregiver could remember exactly what was said, the individual
with dementia could not. "He just stood there and looked at me...I tried to talk to him...try
and give him a hug and say that I am sorry.. .he probably didn't remember but 1 sure
remember."
Professional-Based. Informal caregivers' communication with professional services
varied, as did their understanding of information presented by the professional services. All
informal caregivers described challenges communicating with professional services. One
participant described a poor "bedside manner" from a geriatric consultant when receiving the
diagnosis and commented: "We were not happy with that at all. There [were] two visits...
He interviewed her and interviewed us and his prognosis is she has dementia." Another
participant described a positive experience in regard to communication with professional
services and specifically how it helped when it came to medications.
We got her seen in November by the psycho-geriatric specialist and I told them, 'dad
is refusing to let her stay on the [medication] and so what other options are there?' So
that's when they came up with the [new medication].

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Limited communication from professional services was identified through one
caregiver's experience: "[I] actually didn't have information that my dad had dementia. We
had no idea... he didn't have the formal diagnosis of dementia until he was put into care and
this was at least a year and a half after the things started to deteriorate badly." A lack of
empathy by professional staff was described by another participant: "This one person, I
wondered if she was mechanical. She was by the book and rigid and very logical. She
lacked the human touch."
Caregiving and Dementia Resources
The theme of Caregiving and Dementia Resources emerged through a question
regarding the next steps after receiving the dementia diagnosis. Informal caregivers
described accessing both informal and formal caregiving and dementia related resources.
Positive and challenging experiences were described related to resources available locally
regarding interventions for the disease, and understanding the disease progression.
Informal. Informal resources emerged as a subtheme while participants discussed
their experiences with the diagnosis and next steps. Participants had different experiences
when learning of or receiving the diagnosis of dementia and described accessing sources of
information such as websites and blogs in order to get information to further understand
dementia. One participant stated: "My sister used the computer and got [the] information."
Another commented: "We are at [the] stage [when we are] in the process of looking at
different places [facilities] but I think as a caregiver you have to be a little bit more
prepared." One caregiver described a positive experience when accessing informal resources
and stated:
I guess just finding out how common [dementia] is and how many other families are
going through this...I think after seeing my family realize that my dad was sick, and
some of the things he was saying and doing. [It] wasn't him, it was the sickness.

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Formal. This subtheme emerged as caregivers shared stories of receiving
information about the diagnosis and the next steps from formal or professional resources.
Participants described lack of information and services. One participant shared a challenging
experience when informing the rest of the family about their parent's diagnosis of dementia.
[Formal services] mentioned the word dementia and then we came back, told the rest
of the family and of course, there's only two of us that really understood it [because]
the rest of them are busy with the their own lives and, [they thought] 'well it's just old
age, it just happens to people when they get older.
Furthermore, the caregivers provided examples of challenges due to limited resources and the
lack of information provided by formal resources. One participant stated: "We were dealing
with [dementia] on our own and with no understanding, and we went for help and we didn't
get the help." Another participant discussed the need for more formal resources: "I don't
think in their life time, that there's going to be an [assisted living care facility] in Fort Nelson
for them, and I don't think there is anything close, in the northern region." One participant
shared their experience with formal resources from outside the region:
[She] came up from the Alzheimer's Society and started to talk to us and it was like,
oh my God. Why had we not heard of you before? Why didn't anyone tell us about
this service? Cause everything she was describing is what we lived through.
Personal Experience of Informal Caregiving
The theme Personal Experiences of Informal Caregiving presented an emotional and
individual connection to caregiving. Spirituality, Personal Growth, and an Emotional Side to
Caregiving were the emergent subthemes. Participants shared experiences associated with
Spirituality through stories of a higher power or religious affiliation, connection to an
individual's spirit, soul, or transcended experience. They also described Personal Growth as
a result of caring for a loved one with dementia, along with an emotional side to their
caregiving experience

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Spirituality. Participants spoke about spiritual aspects to their caregiving experience.
In speaking to an experience following her mother's death one participant stated: "I think my
mom drove all this, I don't know how she did." Another example of spirituality was
described this way:
I think my dad stuck around long enough for us to understand that he was sick. The
evening before we were to take him to the care home, I don't know if he knew what
was going to happen the next day, I don't know, maybe he did. I came in the house,
and he came, he grabbed me 'I want to talk to you'. We sat on his bed and he said, 'I
was right here sleeping and Jesus walked in and came and took my hand and he took
me with him and I am not here anymore. But I don't want you guys to be sad. I want
you to know I am in a good place. 1 am not here anymore'.
Yet another participant shared an example of spirituality: "1 think my dad wanted to go
sooner, but he didn't because he wanted us to understand...I think [it] helped bring us
together... I think he stuck around longer than he wanted to just for us."
Personal Growth. Participants talked about personal growth as it related to
caregiving or the sacrifices they had to make in their own personal lives. One participant
shared: "I am a better person because of this.. .you know how others feel, [losing] a mom
and what that feels like." Another participant talked about how she now understands better
the situations people face when they have to put their loved ones into facility care: "I can
understand why people have to put their loved ones away. Just the acknowledgement...
some things are totally out of their hands that they can't do it and that they need help." The
value in the family history learned from this participant's loved one was shared: "I would sit
with him and his older friends just to see them come back to life and talk and and just
reminisce on all these stories and all this oral history would flow out." One participant spoke
of how his lifestyle evolved into a caregiver role: "I became almost like a 24 hour caregiver
without the training [it became a] significant part of my life. It kinda evolved into a
lifestyle."

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Emotional Side to Caregiving. Emotions such as frustration and guilt were felt by
some, while at the same time, feelings of pride, humour, acknowledgment, and validation of
love were felt by others. One participant spoke about concurrent feeling of frustration and
acceptance regarding the dementia prognosis: "We just hit the wall. Then we just decided to
make our own plan and inevitably knowing what would happen." Another aspect of the
emotional side to caregiving is reflected in the words of this informal caregiver: "One of my
sisters once said, 'I felt so bad for you. You were the only one there for some of that stuff. I
see it differently, I was the lucky one."
Caregivers often have many roles and responsibilities; they also talked about feelings
associated to their other roles within the family. One participant described feelings of guilt
for thinking of her own family above the loved one living with dementia: "I probably feel
guilty in some ways, because you are living your own life." Another participant said: "I've
got some guilt, I guess, because maybe being aware of what my mom and my brother had to
live through and in terms of 'why wasn't I there more' [when] 1 had the role of 'caretaker' of
the family."
Participants discussed feelings of confusion and being lost without a diagnosis: "It
was just like we were lost and just confused." Another participant shared frustration about
not knowing the diagnosis:
I would get frustrated and my mom would get frustrated too... we didn't really
understand what was going on. But I looked back on it, it was kinda a positive thing.
It made me realize, if this happens with another loved one in the family and you just
have to watch for things.
On the other hand, a caregiver participant shared positive feelings associated with knowing
the diagnosis: "Me and mom were stuck with him and we were there 24 hours a day. It [the
diagnosis] made me feel good in the sense of 'yes, there is medical reason for it'."

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The importance of humour and patience was described by one participant:
You have to have a lot of patience. You can definitely have some funny times with
them. We have a lot of laughs through some of it. Not at them, not with them, but the
things that they do you can laugh afterwards. You have to laugh.
Each of the interviews with informal caregivers included a notable emotional component
when describing their experiences. This emotional side is challenging to explain or classify
as it was personal and specific to the particular situation of each caregiver participant.
Summary of Findings
In summary, the themes and subthemes demonstrate participants' unique experiences
of providing care to an individual living with dementia. Formal caregivers highlight their
passion and need for patient care, communication, and specific education and knowledge
about dementia in order to provide care for an individual living with dementia. Community
factors such as resources and connectedness were also highlighted in the discussion with
formal caregivers. Informal caregivers shared stories illuminating strengths and challenges
throughout their experience with topics such community and support networks and
communication. In addition informal caregivers highlighted the resources accessed related to
caregiving and dementia, shared stories of spirituality, personal growth, and emotions
associated with their experiences. Despite the challenges providing care for someone living
with dementia, my impression is the stories shared by caregiver participants also convey an
unmistakable aspect of strength and resiliency.

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CHAPTER FIVE
Discussion & Recommendations
In this chapter, a discussion of the findings and emergent themes from the data is
presented, highlighting similarities and dissonance between formal and informal caregivers.
The results highlight aspects of caregiving in a northern community and link them to related
literature. Formal and informal caregivers provided recommendations that have the potential
to influence health related services and complement existing supports for caregivers in
northern British Columbia.
Formal Caregivers
Facets of Formal Caregiving
Formal caregivers shared stories about providing care, demonstratingjfocete of formal
caregiving. Strengths and challenges in the region related to patient care, communication
with professionals (i.e., nurses, doctors, and social workers) and families, education and
knowledge of dementia, and the role of relationships were discussed. Stories presented a
positive approach to patient care, safety, and creating moments of joy while working with the
individuals with dementia. One participant described an experience related to patient care
and safety, highlighting the significance of a close knit community and the need for
environmental adaptations to existing facilities. According to Harris (2010) environmental
considerations contribute to a patient's quality of care and participants in my study
highlighted a challenge with patient care and recommend that additional environmental
considerations (e.g., wall colour, lighting, organizational structure, and staffing patterns)
would provide not only a safer environment, but more holistic approach to an individual's
physical, social, and cultural care. Formal caregivers depict an approach to caring for
individuals with dementia as holistic and patient centered. In order to better meet the needs of

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patients with dementia, formal caregivers described ways they adapt and seek to modify their
approach, the physical environment, and incorporating social and cultural factors utilizing
pre-existing relationships. Collectively the stories and experiences shared by formal
caregivers represent a range of health care professionals' perspectives (i.e., nurses, licensed
practical nurses, and care aides).
Several researchers outline the benefits to different types, styles, and levels of formal
care available including: in home care, community or respite care, institutional care, and non­
profit community care (Harris, 2010; Jones & Miesen, 1993; Kemp et al., 2000; Montgomery
& Kosloski, 2009). In the current research, formal caregivers identified challenges such as a
lack of community resources and a limited number of professionals available. The known
benefits presented in the established literature regarding different types of services and
resources available, validates the concerns raised by formal caregivers. In addition, this
presents a challenge regarding capacity of service and the ability to provide services with
limited professional staff within the Northern Rockies District.
With respect to the experiences of formal caregivers and the facets offormal
caregiving, the number of individuals living with dementia is growing; thus expected is the
need for facility care and community services will soon exceed capacity across Canada
(Alzheimer Society Canada, 2010). According to the Alzheimer Society Canada (2010), the
number of Canadians over the age of sixty five living at home with dementia is expected to
increase from 60 to 69 percent. It will also place a substantial pressure on community based
supports leaving smaller more isolated centers without the necessary services and education
to provide optimum care to individuals living with dementia (Alzheimer Society Canada,
2010). Formal caregivers made reference to limited home support services, lack of facility
options, and their current hospital design in the Northern Rockies District as challenges to

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providing quality patient care. Based on these findings further examination of formal care
and service provision in the Northern Rockies District with respect to the areas of home
support, facility or housing options, and hospital services is needed.
Challenges arose with respect to communication between members of different health
care disciplines, especially between consultants, specialized services, and family members.
Formal caregivers expressed the need for all professional disciplines to have better
communication and to be 'on the same page' when it comes to providing care for individuals
living with dementia. According to Weber, Courtney, and Benham-Hutchins (2009),
communication among health professionals is critical to service delivery. Aston, Shi, Bullot,
Galway, and Crisp (2005) and Christ and Blacker (2005) also discuss the concept of
multidisciplinary communication to enhance the quality of service by formal caregivers in
their relationship with patients and their families. The model of communication suggested by
Aston et al., (2005) builds multidisciplinary communication with a focus on four areas:
predictability, knowledge and perspectives, relationships and support, and desired outcomes.
In expressing difficulty with communication among disciplines, study participants articulated
the need for education and increased knowledge of dementia as a means to overcome this
challenge. The model suggested by Aston et al. (2005) may be an area to explore further as
an improved model for multidisciplinary communication.
Formal caregivers discussed education and knowledge as a way to enhance
communication and improve the understanding of services needed for individuals living with
dementia. Caregivers referred to sources for educational opportunities including: Northern
Health's online education series, E-Learning, the Dementia Journey, and having access to the
Alzheimer Society staff and resources located in Dawson Creek. Formal caregivers
discussed the need for professional education sessions to enhance caregiving indicating that

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acquiring and obtaining knowledge about dementia assists with approach to care, and
contributes to building a connection with a patient. According to Frank-Stromborg, Ward,
Hughes, Brown, Coleman, Gatson-Grindel, and Miller-Murphy (2002) having specialized
knowledge and training improves the outcome of care; specifically enhanced education,
knowledge, and specialized training for formal caregivers resulted in enhanced service
provision, a better understanding of roles and approaches needed to provide care to an
individual living with a dementia.
From the formal caregivers' point of view, having a pre-existing relationship meant
they were able to establish a rapport with the client/patient based on previous known
experiences and interests within the community (e.g., knowing the individual had worked as
a tire repairman). Interestingly, this theme emerged through a discussion regarding the
staffing at the hospital and the fact that many of the caregivers have been working and
residing in the area for over twenty years and thus know most community members. Kemp
et al. (2009) find positive relationships between formal caregiver and care recipient families
can enhance the service provision. There is limited research regarding the impact of
relationships between formal caregivers and care recipients, although formal caregiver
participants emphasize the benefits of relationships within the community. Kemp et al.,
(2009) suggest one major factor influencing relationships between care providers and care
recipients is community, especially size and location. The unique connections between
formal caregivers in Northern Rockies District and community members could be linked to
size and location of the community and may facilitate the ability of formal care providers to
build relationships with patients. Participants in my study describe their roles as more than
just being formal service providers, but also as community members helping a family within
their community.

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Community
With respect to the role of community, strengths and challenges related to resources
and connectedness surfaced. As indicated previously, the small town factor and
connectedness via relationships allows formal caregivers to better understand the needs of
their patients and the families. In terms of challenges, the participants identified the limited
local resources. Formal caregivers recommended that improving community services (e.g.,
meals on wheels, respite, and home support) could potentially result in individuals with
dementia staying in their homes longer. Gottlieb and Johnson (2000) along with
Montgomery and Kosloski (2009) discuss the positive role played by access to needed
community based services and how they must be considered when providing care for
individuals living with dementia.
In addition to the community-based services already mentioned, access to specialized
geriatric services was identified as a challenge. Caregivers shared experiences of how the
community can present a "Catch 22" situation. Although a smaller, tight knit community can
strengthen relationships and supports at some levels, smaller community can pose challenges
with respect to accessing services, facility care and specialized geriatric care. As Hanlon and
Halseth (2005) explain, due to the remoteness of the towns in the Northern Rockies District,
it is "considered too small to support any of the psycho-geriatric services" (p.19).
Overall, key findings from the formal care providers focused on two main themes:
facets of formal caregiving and community. Stories shared by formal caregivers highlight
strengths and challenges faced in areas of patient care; communication between professional
disciplines; acquiring the education and knowledge about dementia; and accessing resources.
Through shared experiences, the findings shed light on formal caregivers' perspectives of
providing care to an individual with dementia in the Northern Rockies District and identified

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factors for consideration in both improving care and improving the experience of providing
care.
Informal Caregivers
Community and Networks
As with formal caregivers, informal caregiver participants emphasized a sense of
community rendering both positive and challenging experiences. Moulton (2000) discusses
the positive aspect of community and networks with her experience providing care to her
husband with Alzheimer's disease in a rural setting. Informal caregiver participants highlight
similar experiences as those Moulton shared providing care especially with regards to a
'sense of community' in the rural setting. All the participants made reference to accessing
both local and regional services, which included assistance through home care nursing; home
support; and local and regional facility care. With respect to the community's support, some
informal caregiver participants referred to community and its support network as strength,
whereas others felt living in a small community resulted in a potential lack of confidentiality
and anonymity. Typically, individuals will seek the needed support through familiar
networks (Chappell & Dujela, 2009). One participant also referred to support felt within the
community on behalf of the family member she was caring for. A caregiver's needs and
experiences, as well as their community and its support networks are unique, therefore, in
this study an inconsistency in the findings surfaced with respect to community and networks.
Communication
All informal caregivers discussed communication and provided examples of
communication with other family members (e.g., brothers, sisters, spouses, and their own
children) and with formal or professional services. With respect to family-based
communication, participants provided examples of how the information was shared among

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their family members. According to Harrigan and Koerin (2007) communication between
family members can be challenging due to factors associated with geographical distance
between family members; the relationship with loved ones prior to diagnosis; and the family
dynamics specific to each informal caregiver. In this research, communication strategies
between informal caregiver participants and family members depended on their unique
situation. Informal caregivers employed methods such as the use of technology in order to
enhance the communication between family members.
Three out of the four family caregivers interviewed experienced challenges with
communication related to professional services, diagnosis, and treatment of the individual
with dementia (i.e., doctor's appointments, specialist assessments, and home care nursing).
The communication style and role of the staff person may have influenced the caregivers'
perceptions of communication. In addition, the value placed on the importance of the
particular communication occurrence may have impacted participants' experience with
professional services. Christ and Blacker (2005) discuss the benefits to providing education
to family members of individuals with dementia including communication strategies with
health care professionals. Education for family members about effective communication
with health care professionals could enable family members and health care professionals to
better understand each other's perspectives and desired outcomes.
Dementia and Caregiving Resources
According to informal caregivers, resources which informed them of dementia and
caregiving emerged primarily through discussion of the diagnosis and the next steps. They
expressed how information and education helped them to better understand the disease and
their caregiving roles. Informal caregivers also found useful information through resources
such as doctor's offices, public health, and home care nursing staff. Typically, individuals

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will seek a particular resource or specific information that pertains to their situation or need
(Montgomery & Kosloski, 2009). Input from informal caregivers in my study suggests that
there is a need for more resources and educational opportunities available for informal
caregivers in northern BC and perhaps even all regions of BC.
Personal Experience of Informal Caregiving
Throughout their individual stories, participants discussed aspects of spirituality,
personal growth, and their emotional response to providing care. According to McLennan,
Rochow and Arthur (2001) spirituality and each participant's reference to their personal
experiences, beliefs, or phenomena appeared to be related to a specific meaning, value, or to
their own personal growth via the caregiving process. Three of the four participants spoke of
spirituality and provided examples of how spirituality impacted their experience of providing
care.
Participants used role, duty and lifestyle to describe their caregiving experience and
emphasized personal growth and satisfaction. According to Boerner et al. (2004) informal
caregivers are more likely to see their role as satisfying, or have a greater sense of purpose
from the experience when the relationship with the care recipient has been positive. Informal
caregivers shared stories about their caregiving role evolving into a lifestyle and how it
impacted their own life.
Informal caregivers shared a range of feelings throughout this study. Feelings of
frustration, guilt, and sadness, as well as feelings of acceptance, love, and joy were shared.
The emotional side of caregiving is acknowledged by several researchers highlighting the
benefits to expressing emotions as a way to enhance the caregiving experience (Boerner,
Schulz, & Horowitz, 2004; Chappell et al. 2008; Ellis, Miller & Given, 1989; Harris, 2010).
Caregivers described feelings of sadness when hearing the dementia diagnosis for the first

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time, as well as confusion and frustration as the disease progressed. Although caregivers
shared a range of emotions through their experience, they also described feelings of
acceptance and appreciation through love and the use of humour.
Similarities and Dissonance within the Findings
When comparing formal and informal caregiver findings similarities and dissonance
surfaced. Community, understanding of dementia, and emotions associated with caregiving
presented similarities and incongruence. The next section will present the similarities and
dissonance found in the three areas previously mentioned.
Community
Community is clearly a factor in both formal and informal caregiver's experiences.
Community was described by both formal and informal caregivers as feelings of
connectedness, support, and belonging; creating a 'sense of community'. According to the
Public Health Agency of Canada (2005) a sense of community emerges through the
community's connectedness with one another, shared by the support of geographic location,
and history. Caregivers in this study referred to community in respect to accessibility of
services and limited amount of resources within the community. Positive experience related
to connectedness within the community was shared by both formal and informal caregivers.
Relationships played a role in describing connectedness to a community, including the type
of relationship (i.e., friend or family member) the formal or informal caregiver had to the
individual living with dementia
Geographical location and local resources were discussed differently by formal and
informal caregivers. All caregivers in my study provided examples of accessing local
resources and regional services. Formal caregivers discussed a need for more local resources
because of the challenge with inconsistent specialized services in the community and lack of

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facility care, and community supports (e.g., home support, meals on wheels, and assisted
living housing). Informal caregivers discussed a need for local resources in order to support
them in areas of instrumental activities of daily living (IADL), home support services, early
diagnosis, education related to caregiving in order to keep their loved one at home and in the
community for longer. The term instrumental activities of daily living (IADL) is described
as activities related to an individual living independently in a community, not necessarily
related to fundamental functioning (e.g., management of finances, meal preparation, house
cleaning, grocery shopping, social interaction) (Castilla-Rilo, Lo'pez-Arrieta, BermejoPareja, Ruiz, Sa'nchez-Sa'nchez, & Trincado, 2007; Vancouver Island Health Authority,
2004).
Formal caregivers primarily discussed the benefit to having more local services
within the Northern Rockies District, whereas, informal caregivers primarily shared their
experiences with the existing services. Future research and evaluation of local and regional
resources in the Northern Rockies District is needed in order to identify areas of need or gaps
in service provision for caregivers and individuals with dementia.
Knowledge and Understanding of Dementia
Education and understanding of the disease are fundamental to caregiving (Alzheimer
Society BC, 2009). Information sharing surfaced as a necessity in order to provide care to an
individual living with dementia in this study. Both formal and informal caregivers
highlighted the importance of awareness and knowledge about dementia. Morgan, Innes, and
Kosteniuk (2011) discuss the need for caregivers to obtain the knowledge through
educational opportunities, emphasizing the need for such opportunities in rural health settings
similar to the Northern Rockies District (Morgan et al., 2011).

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Differences between the formal and informal caregiver participants surfaced
regarding the purpose of education and information sharing. Formal caregivers described the
purpose of education and information sharing as a way to bridge the gap in patient care and
communication with other health care professionals; primarily, specialized geriatric services.
However, the purpose of education and information sharing for an informal caregiver was to
assist in understanding the disease and to be a better caregiver. More research into the
purpose and type of information and resources obtained by formal and informal caregivers
would be beneficial in planning for local resources, health care services, and education
opportunities.
Emotions associated with Caregiving
Caregivers in this study described feelings associated with their experience. Formal
caregivers expressed emotions related to challenges they experienced with the existing health
care system; and in particular, lack of services to help them provide care. Their concerns are
supported in the current literature including the need for more community based services in
the local communities (Harris, 2010; Montgomery & Kosloski, 2009). Formal caregivers
also described feelings of pride, passion, and satisfaction with their professional role. On the
other hand, informal caregivers' emotions were primarily associated with personal
experience providing care, relationships with their loved ones, at the time of receiving the
diagnosis, and when utilizing formal services (Chappell et al., 2008).
The findings from this research highlight the need to include formal and informal
caregivers in the planning and allocation of local resources and regional services. The need
to increase awareness of dementia and its progression is critical. Formal and informal
caregivers described some difference in experiences with regards to the emotional side of

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caregiving. But all participants shared unique experiences specific to providing care in
northern BC.
Recommendations
As the participants in this study are the experts in their own region of northern BC,
each was asked for recommendations with respect to improving care and service provision in
their community. Recommendations from formal caregivers highlight ways to better support
formal care providers and to improve services in the region. Informal caregivers provided
recommendations to help support other informal caregivers, as well as recommendations to
help themselves. This next section highlights caregiver recommendations and how they
relate to the current literature.
Formal Caregivers
Care providers recommended improving dementia related services in the Northern
Rockies District, such as appropriate housing and structural modifications to existing
services. For example, participants described having the potential to keep individuals in the
community longer if appropriate housing and structural modifications to the hospital were
made, as well as specific adaptations to the existing adult day centre. One participant stated:
"The [clients] we have tried have been very resistant...[the adult day center] is very
institutional. It looks like you are dropping them off and putting them into
placement...because it's at the hospital."
Education, training, and an integrated multidisciplinary approach to formal caregiving
were other recommendations made to improve formal services within the Northern Rockies
District. The recommendation to provide more education for formal caregivers included
providing tools to help individuals plan ahead with the diagnosis of dementia and for their
families; along with having more information and tools about power of attorney and

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representation agreements. Education and communication are linked, as one participant put
it: "Education education! Training staff, education for the family and community...better
communication between [health care professionals and family]". According to Biem,
Hadijistavropoulas, Morgan, Beim, and Pong (2003) communication is essential to an
integrated, multidisciplinary approach. An integrated multidisciplinary approach to care
involves different professional disciplines with the aim to promote quality care for the
clients; at same time, the approach promotes communication, collaboration, and
understanding between professional disciplines.
The last recommendation by formal caregivers is to generate recruitment and
retention packages to draw more qualified and professional disciplines to the Northern
Rockies District. One participant stated: "We need to have more...education grant money for
northern people, forgivable loans if you stay in your community...just the incentive to keep
people here, trained people here."
Giving voice to formal caregivers in the Northern Rockies District will facilitate
empowerment, recognize, and utilize the local expertise as a way to address the challenges
facing northern communities (Hemingway, 2010). The formal caregiver participants are the
local expertise; their knowledge, experience, and recommendations are presented and have
the potential to influence policy and program development.
Informal Caregivers
Informal caregivers provided two sets of recommendations. The first set of
recommendations directed at other family caregivers included the need for self care, the need
to educate yourself and seek support, and to plan for the future. The second set of
recommendations included the need for supports in the workplace, access to non medical

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supports and support groups, and public education as ways to better support informal family
caregivers.
Self care is the first recommendation and is essential in keeping caregivers healthy
(Chappell et al., 2008). Self care is often described as taking care of one's body, mind, and
spirit. Participants emphasized taking time for yourself as a caregiver: "you have to have time
for yourself and "I think you have to take care of yourself first, cause if you can't take care
of yourself then your certainly can't take care of the parent or child or whoever." Overall,
self care was seen as essential to the wellbeing of caregivers.
The second recommendation, to educate yourself and seek support, is linked with self
care: "Reach out and try to find similar families in the same situation because you need that
support from outside your family, not just your family." Another participant stated: "I think
that I have pretty good family support, you know, so that's important". The Alzheimer
Society BC promotes support and education for informal caregivers as a strategy to maintain
caregiver health.
The third recommendation is to plan for the future. This is congruent as with the
progression of dementia symptoms, and each individual's situation will change as the disease
progresses. McCann-Berange (2000) discusses the need to organize legal and financial affairs
as a way to plan for the future and best meet the needs of both the individual living with
dementia and the informal caregiver. An informal caregiver stated: "Try to get organized for
what you may be in for, and what you're going to need for them."
Informal caregivers recommend support in the work place as a way to improve their
caregiving experience. One participant commented on their full time employment situation
and their caregiving role: "Working full time and you know, [with] everything else on your
plate... [support in the workplace] would make a big difference." Another participant

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shared: "We all work. There is not a good understanding [of caregiving] at all and that is a
huge [dilemma]... I could afford to quit work for six months, [but] a lot of people can't."
According to Ellenbogen, Meade, Jackson, and Barrett (2006) employment does impact
informal caregivers. Some informal caregivers make no employment adjustments, and
continue to work with no adjustments to their workplace, schedule, or responsibilities
(Ellenbogen et al., 2006). However, others who have the resources to make employment
adjustments and accommodations take unpaid leaves, decrease their hours, rearrange their
schedules or remain or become unemployed. At the present time, there is limited support
within workplaces, union contracts, and employment policy to help support informal
caregivers who are employed.
Access to non medical supports and support groups was another recommendation
about how to better support informal caregivers. Currently non medical supports (otherwise
referred to as instrumental activities of daily living-lADL) are not a mandated service
through the Health Authorities in BC. Therefore, there is reliance on community agencies,
volunteer community members, and private businesses to provide and assist with light
housework, laundry, mowing lawns, light handyman work, socialization, and meal
preparation in order to support individuals to remain in the community. One participant
shared: "Somebody doing the chores for you, you can't even pay a kid twenty bucks an hour
to mow your lawn...your house falls apart, laundry does not get done... all those external
services add more to the professional health care." Another participant stated: "It would be
nice to have someone take [individuals with dementia] to activities." As a result of limited
resources, informal caregivers and individuals with dementia without access to needed non
medical supports, potentially require hospitalization or more acute services earlier.

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Support groups for caregivers providing awareness, education, and training
workshops related to caregiving and dementia were also recommended. One participant
stated: "1 think that a support group ... even a number you can call., .something. At the time,
there was a crisis in our family and I didn't feel like talking to a local counselor." Another
participant commented: "Trying to network with like individuals and like families [is
important] because you are not alone." Support groups are not a new concept but require
organization, resources and dedication from either a group of individuals within the
community or a community agency.
The final recommendation to better support informal caregivers is through public
education; specifically education sessions on the role of caregiving and signs and symptoms
of dementia. One participant stated: "A workshop on caregiving at the community
college...more information on respite [services]." This recommendation by study
participants is fitting as Sussman and Regehr (2009) highlight the need to have and utilize
community-based educational services to support informal caregivers. In addition, the
support helps individuals stay in their communities and/or homes longer. Community
awareness is essential in improving services, support, and awareness of dementia and to help
keep people living well in their communities.
Summary: Discussion and Recommendations
Dementia and northern caregiving is an area where both formal and informal
caregivers have the knowledge and experience necessary to help guide policy, assist with
service provision, and influence the development of community based supports. My
recommendations from this research include the need to: improve access to information
about dementia and caregiver resources; provide education and training opportunities for
both formal and informal caregivers; improve communication between formal care services

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and informal caregivers; improve support for informal caregivers through changes to
government policy; and improve dementia related service provision in northern remote
regions in BC.
More specifically, I would recommend a community information session hosted by
the Alzheimer Society of BC within the region and to make information brochures more
available through the physician's office, and other local health related services. In addition, I
recommend ongoing education and training opportunities hosted by the Health Authority and
Alzheimer Society of BC within the Northern Rockies District either in person, via telehealth, or webinar. Governments need to revise policy regarding compassionate care benefits
in order to better support informal caregivers financially. Finally, the Ministry of Health
should fund a regional dementia care lead position responsible for the management and
coordination of dementia related services within the northern regions of BC.
The need for improvement in regards to dementia and caregiving is not a new agenda
item; strategies within each Canadian province have been discussed to varying degrees for
the past five years or more. Australia, Norway, the Netherlands, Scotland, and the United
Kingdom have plans that include health and social policy development; establishing more
home-based services; adapting care facilities to better meet the needs of resident with
dementia; education programs for people with dementia, health professionals, and the public;
and to invest in research (Alzheimer Society, 2010). Currently in Canada there is no national
policy outlining a dementia strategy, leaving the responsibility to each provincial government
to compile its own provincial strategy for individuals living with dementia and their
caregivers (Alzheimer's Society, 2010). The formal and informal caregiver participants have
provided recommendations specific for their region, and their responses underline the critical
need to develop a strategy for dementia and caregivers.

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The Rising Tide report (Alzheimer's Society, 2010) provides six elements that would
positively impact services for individuals with dementia and their caregivers: better access to
information related to dementia awareness, stigma, and resources to help with earlier
diagnosis; education for caregivers (both formal and informal) to ensure knowledge of
disease, treatment, and care strategies are appropriate, formal and informal caregivers'
support for training and services, case management and system navigation, services
organized along the lines of chronic disease prevention and management models, and
investment in research (Alzheimer Society, 2010). Five out the six elements from the Rising
Tide report were identified by formal and informal caregiver participants in this study via
their recommendations.
Giving participants the opportunity to share their experiences from this particular
region that has limited services, vast geographical distance to larger centres, and limited
supports, provides an opportunity to create a vivid understanding of their personal
experiences, and hear their recommendations about ways to better support formal and
informal caregivers. Policy and program development coupled with further research based
on the findings from formal and informal caregivers living in the Northern Rockies District
has the potential to strengthen services and help support caregivers in northern BC. Acting on
or undertaking further research about the recommendations from formal and informal
caregiver living in the Northern Rockies District has the potential to influence not only social
work practice, and health policy, but also funding allocation and staffing formulas necessary,
for improving service provision in northern BC regions.

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CHAPTER SIX
Wrapping up
This chapter will discuss the limitations of this study and potential areas for future
research. In addition, a brief discussion related to the potential influence on change to policy
and the implications for social work practice. This thesis will conclude with a summary of
my personal learning from this experience.
Limitations of the Study
Although this research offers diverse and valuable information related to the
experiences of formal and informal caregivers residing in the Northern Rockies District, it
has limitations. Formal caregiver participants self identified as female health care
professionals, with a background as Registered Nurses, Licensed Practical Nurses, and Care
Aides. The sample includes no male health care professionals, and there is no representation
from other health professionals (e.g., social work, occupational therapy, or physiotherapy) or
representation from persons of First Nation origin. Representation of informal caregivers
primarily consisted of adult children caring for a parent, with no representation from a spouse
caring for another spouse. However, there was First Nations representation.
My physical location and timeframe for data collection may have impacted the
research. Factors include the fact that: the focus group and semi-structured interviews took
place over a six day time period, which included a holiday weekend, and that the researcher
was able to allot only one interview per day. With my situation of being based out of Prince
George during the organization and scheduling of the focus group and semi-structured
interviews, the number of participants located for both the focus group and the semistructured interviews may have been impacted. Increasing the duration of data collection

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may have increased the possibility for more participation and further representation of
professional, gender and cultural diversity amongst the participants.
Overall, there is limited representation of First Nations participants amongst the
formal and informal caregivers in this study, a strong female influence, limited
multidisciplinary input, a limited cross section of informal caregivers, and a potential
challenge with the research timeframe and location. All presented factors may have
influenced the results of this study. Nonetheless, the quality of experiences presented by
both formal and informal caregivers helps provide a picture of dementia and northern
caregiving from the Northern Rockies District that can assist in improving care provision for
caregiver and care receivers alike.
Future Research
Given that this particular study was exploratory in nature, it provided possibilities for
future research. For example, future research in the area of health literacy and dementia has
the potential to aid in the area of resource and education development. Research into
dementia and spirituality, including end of life situations with a reflection on culture
components and multicultural diversity, has the potential to help develop policy related to
end of life care with diverse populations. Further examination of a multidisciplinary
communication model specific to dementia care has the potential to positively impact service
and program planning within Health Authorities across the province of BC.
There are three areas for future research that pertain more specifically to northern
remote settings. First, more research could explore formal and informal caregivers living in
northern settings within BC with a focus on diverse cultural representation, including
individuals of First Nations origin. Further studies could also explore and examine formal
and informal caregiving of individuals living with dementia in a northern rural setting as

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compared to those in a northern urban setting. This may provide insight and inform the
allocation of health care programs dollars towards services and supports for formal and
informal caregivers. Finally, an evaluation of the current formal services for individuals
living with dementia in northern remote and rural settings has the potential to identify the
strengths of existing services as well as areas in need of further development. This type of
research could help better meet the needs of formal caregivers, and lead to more appropriate
support for informal caregivers caring for an individual living with dementia.
According to a speech from the throne on October 2004, the federal government of
Canada is working with the provinces, territories, and stakeholders to increase supports for
family caregivers (www.hrsdc.gc.ca/eng/cs/comm/sd/caregivers.shtml). Formal and informal
caregiving is becoming a larger issue within the public policy issue arena. Future research
considerations need to reflect government initiatives, and must highlight the needs for
improved supports for both formal and informal caregivers and individuals living with
dementia.
Implications for Social Work Policy and Practice
The overall themes arising from this study are intertwined with a structural social
work approach and include concepts such as collectivism and making the personal political
(Mullaly, 2002). Social workers have the skill to work within an integrated,
multidisciplinary health team striving to ensure holistic and client centered care, while
simultaneously making connections to better understand the systematic implications for both
formal and informal caregivers. Collectively, participants emphasize a need for change, in
particular, with the health related services and local supports for caregivers. Study
participants highlighted a number of policy level issues such as the need for local access to
education, specialized geriatric services, and specific caregiving and dementia resources. In

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81

addition, participants recommended further program development in the area of dementia
related health services. Formal caregiver's in particular, identified the need for social work
professionals in order to provide a more holistic approach to care. Social work practitioners
and professional organizations have the opportunity to advocate for policy changes that
would address these concerns.
Social workers have the knowledge to connect personal experiences with the larger
collective experiences of caregiver's in order to promote systematic and social change
(Mullaly, 2002). In order to evoke social change consideration needs to given to northern
social work practice, linking the personal experiences of caregivers in northern BC, to a
critical analysis of the broader implications of current government policies and programs
affecting caregivers. In conclusion, this study has the potential to facilitate the empowerment
of both formal and informal caregivers and inform social work practice, policy and program
development affecting the supports for caregivers in northern BC.
Personal Learning
The conversations with formal and informal caregivers have impacted my life, and
my perceptions of northern caregiving. I reflect back on the stories shared with me during
my research as a way to add perspective and to ground me in my own practice. Participants
invited me into their reality for a brief moment, adding fuel to my passion for better service
delivery. In addition, Hunt (2010) highlights the perspectives and voices of research
participants, and the audience who will be recipients of the products of the research as a
crucial aspect to being a reflexive researcher. Furthermore, the impact on my personal
learning would not have been the same without the experiences and insightful
recommendations made by all participants of this research. All participants and their stories
have added to my existing passion for helping people.

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82

When I began the research process, I felt more confident and absolute about the
research process. When I completed the data collection, I thought to myself: 'Great, I'll be
done the in three months'. To my disbelief, it took longer than I expected. Hunt (2010)
discusses a concept of 'active waiting' and describes it as "the need for the researcher to
achieve a balance throughout a research project between moving forward and advancing the
research process, and on the other hand allowing adequate space and time for the full
development of each aspect of the research" (p.72). From this journey, I have learned to have
more patience with the research process, put aside personal agendas, and accept the things
that I cannot control. With this acceptance, the application of knowledge gained through a
review of literature, the research process, and mentorship from my thesis supervisor has
developed my confidence as a researcher. At the end of the focus group, one participant said
to me: "... I hope your impact goes somewhere." This statement resonates with and inspires
me to continue to give voice to populations that may go unheard. Furthermore, the
knowledge, perspective, and experience gained through my thesis research will encourage me
to participate in future research endeavors with renewed confidence. The community of Fort
Nelson holds a special place in my heart. The friendships, professional relationships, and the
community itself changed my perspective on service provision in this province, opened doors
for new opportunities, and personal growth.

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83

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Wister, A., Sixsmith, A., Adams, R., & Sinden, D. (2009). Fact book on aging in British
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Wuest, J., Ericson, P.K., Stern, P.N., & Irwin Jr, G.W. (2001). Connected and disconnected
support: The impact on the caregiving process in Alzheimer's Disease. Health Care
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Yaffe, M., Orzeck, P., & Barylak, L. (2008). Family physicians' perspectives on care of
dementia patients and family caregivers. Canadian Family Physician. 54(7), 10081015.
Yap, L., Seow, C., Henderson, L. M., & Goh, Y. (2005). Family caregivers and caregiving in
dementia. Clinical Gerontology, \5(1), 263-271. doi 10.1017/S0959259806001900
Zapf, M. K., (1993). Remote practice and culture shock: Social workers moving to isolated
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http://library.unbc.ca:2061/ehost/resultsadvanced?
Zapf, M. K. (2002). Geography and Canadian social work practice. In F. Turner (Ed.), Social
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Appendix A
Letter to Northern Health: Formal and Informal Caregivers

Julie Wade, MSW Student
3333 University Way, Prince George, B.C., V2N 4Z9
Cell phone: 250-617-6334 email: wade@unbc.ca
Date
Name of Agency
Address, City, Postal Code
Dear

,

As a graduate social work student at the University of Northern British Columbia I
am required to conduct research and develop a thesis based on the findings. I would like you
to consider encouraging both informal and formal caregivers receiving services from or
working in your organization to participate in this research.
The purpose of this research is to explore the experiences of formal (e.g., Registered
Nurse, Licensed Practical Nurse, Social Worker or other paid employee) and informal (e.g.,
spouse, family member, or friend) caregivers, caring for an individual with dementia, in
Northern Rockies District. It is hoped that their stories and insights will provide information
about caring for an individual with dementia in a northern remote setting. All participation is
completely voluntary and individuals are welcome to withdraw from the study at any time.
Once I have received your permission I will request that you display posters where
they will be visible to potential participants. The posters will explain the research project,
and request that caregivers who are interested in participating contact me at the cell phone
number or by email.
All participants will be assigned fictitious names to protect their identities, and
confidentiality will be maintained. The participant information sheet has been included with
this letter for you to look over before presenting this information to employees and clients. If
you have any additional questions or concerns, please feel free to contact me via phone or
email.
Your support is sincerely appreciated,

Julie Wade, MSW Student, UNBC
250 617-6334/ wade@unbc.ca

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Appendix B
Letter to Northern Rockies Seniors Society: Formal and Informal Caregivers
Julie Wade c/o Dawn Hemingway, School of Social Work
3333 University Way
Prince George, BC V2N 4Z9
Date
Northern Rockies Seniors Society
BSMT 5104 Airport Dr,
Fort Nelson, BC
VOC 1R0
Dear
,
As a graduate social work student at the University of Northern British Columbia I
am required to conduct research and develop a thesis based on the findings. As a former
resident of the Northern Rockies District, I am aware of the increasing numbers of people
aging in place in the community. I have a personal interest in the needs of older adults and
would like you to consider encouraging participants from your program to participate in this
research.
The purpose of this research is to explore the experiences of informal and formal
caregivers providing care for an individual with dementia, in the Northern Rockies District. It
is hoped that their stories and insights will provide information about caring for an individual
with dementia in a northern remote setting. In addition, informal and formal caregiver's
sharing their experiences, will help raise awareness regarding the right to age in place with
adequate and accessible resources for caregivers and individuals with dementia in the
Northern Rockies District.
Once I have received your approval, I will request that you display posters where they
will be visible to participants. I also would like to request the use of office space at 5104
Airport Drive, to conduct face to face interviews and a focus group (have not confirmed a
date). The poster will explain the research project, and request that informal and formal
caregivers who are interested in participating contact me at the cell phone number or by
email provided.
All participants will be assigned fictitious names to protect their identities,
confidentiality will be maintained, and all participation is completely voluntary. Individuals
participating in the research are welcome to withdraw from the study at any time. The
participant information sheets have been included with this letter for the board of directors
look over before presenting this information to patrons. If you have any additional questions
or concerns, please feel free to contact me via phone or email.
Your support is sincerely appreciated,
Julie Wade, MSW Student, UNBC,
250 617-6334/ wade@unbc.ca

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100

Appendix C
Project Information Sheet: Formal Caregivers
Graduate Student Thesis Researcher: Julie Wade, Masters of Social Work Student
c/o University of Northern BC School of Social Work,
3333 University Way, Prince George, B.C., V2N 4Z9
Email: wade@unbc.ca Cell phone: 250-617 6334
Thesis Title: Dementia and Northern Caregiving
Supervisor: Dawn Hemingway, MSW, MSc, RSW, Associate Professor School of Social
Work, UNBC
Purpose of research:
The purpose of this research is to explore the experiences of caregivers providing
formal care (e.g., Registered Nurse, Licensed Practical Nurse, Social Worker or other paid
employee) for an individual(s) with Alzheimer's disease or other related dementias, in the
Northern Rockies District. It is hoped that sharing your experiences, stories, and insights will
provide information about caring for an individual with dementia in a northern remote
setting. Formal caregivers who agree to participate in this study will be asked to share both
positive and challenging experiences while providing care in a northern remote setting. All
participation is completely voluntary and individuals are welcome to withdraw from the
study at any time.
Respondents will be asked to:
•

Contact the researcher at the cell number or email above to arrange a time and place
for the focus group;

•

Commit about one and a half to two hours of time for the focus group process;

•

Give consent (in writing) to take part in the focus group, and have the focus group
recorded by on a digital recorder;

•

Answer the researcher's demographic questions, and questions about individual
experiences of caring for an individual with dementia in Northern Rockies District;

•

Allow the researcher to use quotes from the focus group that do not identify you
personally.

Potential benefits and risks to participants:
Risks
There may be some possible risks to the participants of this study. These risks could
include: concerns about confidentiality regarding personal information; the above risks will
be addressed in the following ways:

Dementia and Northern Caregiving

101

•

Focus group interview will be digitally recorded with participants permission;

•

Only the researcher and her supervisory committee of three UNBC professors (who
are all obliged to respect your confidentiality) will have access to the information
provided in the focus group interview;

•

The digital recording of the focus group will be kept in a fire proof safe in the
researcher's residence, and the voice recording will be transcribed into computer files.
In an effort to preserve anonymity the digital tape file will be kept separately from the
identity file. The computer files will be protected by passwords and firewalls. The
computer files and transcripts will be destroyed no later than five years after this
student researcher has defended the proposed thesis;

•

Any potential identifying information will be removed or altered when input into the
computer; participants will be encouraged to identify a fictitious-names to protect
their identity, or the researcher will assign one for them;

•

There will be no identifying information included in the final study findings, however
personal experiences shared may be familiar to people you know; every effort will be
made to present and/or change information you provide such that it is not identifiable
as coming from you;

•

The final study will be published as a thesis and possibly published in relevant
journals and other related publications, or presented at conferences. No information
that could identify participant will be included in the final study, or subsequent
publications or presentations.

Benefits
There are many potential benefits to participating in this study. Participants will have
the opportunity to explore their positive and challenging experiences. This may provide
participants with a better understanding of their own needs as caregivers, and help them
express those needs. Through this study, participants will have the opportunity share their
experience with other formal caregivers caring for individuals with dementia in a northern
context. Participants will help this researcher, and future researchers, to better understand the
process of involvement with caregiving in a northern remote town in BC, and may impact
policy and practice changes.
Participants can request and receive a copy of the study from this researcher when it
is completed. Should participants require further information before, during, or after the
study they can contact the student researcher Julie Wade by email at wade@unbc.ca or cell
phone 250-617-6334, or my thesis supervisor, Dawn Hemingway, MSW, MSc, RSW by
email at hemingwa@unbc.ca or phone 250-960-5694. Any complaints about the research
project should be made to the Office of Research, University of Northern British Columbia
250-960-5650, or by email reb@unbc.ca

Dementia and Northern Caregiving

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Appendix D
Poster for advertising for Formal Caregivers

UNBC graduate student is looking for formal caregivers (e.g.,
Registered Nurse, Licensed Practical Nurse, Social Worker or
other paid employee) in Northern Rockies District, who are
willing to take part in a focus group.
This graduate student research is about the experience of caregivers caring for an
individual with Alzheimer's disease or other related dementia, in the Northern Rockies
District. The researcher is interested in talking to formal caregivers about their experiences
providing care.

What do you have to do?
Contact the student researcher either by email or phone using the contact information
provided below to discuss the focus group date and time.
How much time will it take?
The focus group will take about an hour and a half to two hours.
Where will the interview take place?
The focus group will take place at a safe location in the community. This location will be
decided on by the majority of the participants and the researcher.
Information shared for the purpose of this study will be kept confidential.

Contact Julie at cell number: 250-617-6334
email: wade@unbc.ca

Dementia and Northern Caregiving

103

Appendix E
Informed Consent Form: Formal Caregivers

I understand that I am agreeing to participate in a research study.

• Yes

• No

I have myself read, or the researcher has read the attached information sheet to

• Yes

• No

• Yes

• No

• Yes

• No

I understand the benefits and risks involved in participating in this study.

• Yes

• No

I understand that the researcher is obligated to maintain my confidentiality, and

• Yes

• No

• Yes

• No

• Yes

• No

• Yes

• No

• Yes

• No

me and I have received a copy.
I understand that the researcher will be digital recording the focus group
interview.
I have had the opportunity to ask questions and discuss the study with the
researcher.

that no personally identifying information will be used in the final thesis report.
I understand that only the student and her supervisor committee (who are all
obliged to respect your confidentiality) will have access to identifying
information about me, and will be using fictitious names to protect my identity.
I understand that if I disclose information about a concern for the safety of an
individual, that the researcher has a legal duty to report that information to Adult
Protection Services, located within Mental Health and Addiction at Northern
Health.
Do you wish to be contacted to review the focus group transcript and a copy of
the preliminary results?
If so, please leave contact information below:
I understand that my participation in this study is voluntary and I can
withdraw from the study at any time.
This study was explained to me by: Julie Wade, Master of Social Work Student
I agree to take part in this study:

Date:

Signature of Research Participant
Printed Name of Research Participant
I believe that the person signing this form understands what is involved in the study and
voluntarily agrees to participate.
Date:
Signature of Researcher

Dementia and Northern Caregiving

104

Appendix F
Project Information Sheet: Informal Caregivers
Graduate Student Thesis Researcher: Julie Wade, Masters of Social Work Student
c/o University of Northern BC School of Social Work,
3333 University Way, Prince George, B.C., V2N 4Z9
Email: wade@unbc.ca Cell phone: 250-617-6334
Thesis Title: Dementia and Northern Caregiving
Supervisor: Dawn Hemingway, MSW, MSc, RSW, Associate Professor School of Social
Work, UNBC
Purpose of research:
The purpose of this research is to explore the experiences of informal caregivers (e.g.,
spouse, family member, or friend) providing care for an individual with Alzheimer's disease
or other related dementias, in northern BC. It is hoped that sharing your experiences, stories,
and insights will provide information about caring for an individual with dementia in a
northern remote setting. Informal caregivers who agree to participate in this study will be
asked to share both positive and challenging experiences while providing care in a northern
remote setting. All participation is completely voluntary and individuals are welcome to
withdraw from the study at any time.
Respondents will be asked to:
•

Contact the researcher at the cell number or email above to arrange a time and place
for an interview;

•

Commit about one to one and a half hours of time for the interview process;

•

Answer the researcher's demographic questions, and questions about your experience
of caring for an individual with dementia in Northern Rockies District;

•

Give consent (in writing) to be interviewed, and have the interview recorded by hand
and on a digital recorder;

•

Allow the researcher to use quotes and demographic information from your interview
that do not identify you personally.

Potential benefits and risks to participants:
Risks
There may be some possible risks to the participants of this study. These risks could
include: concerns about confidentiality regarding personal information; possibility of
emotional upset due to the subject matter; possible disclosure of a senior who has been
harmed or neglected, would result in an immediate report to Adult Protection Services, part

Dementia and Northern Caregiving

105

of Mental Health and Addictions at Northern Health. The potential risks will be addressed in
the following ways:
• Researcher and participants will choose an interview location in which both parties
feel comfortable;
• Interviews will be digitally recorded with permission of the participants;
• Only the researcher and her supervisory committee of three UNBC professors (who
are all obliged to respect your confidentiality) will have access to the information
provided in the semi-structured interviews;
• The written and digital recordings of the interviews will be locked in a fire proof safe
in the researcher's residence, and the voice recordings will be transcribed into
computer files. In an effort to preserve anonymity the digital tape file will be kept
separately from the identity file. The computer files will be protected by passwords
and firewalls. The computer files and transcripts will be destroyed no later than five
years after this student researcher has defended the proposed thesis;
• Any potentially identifying information will be removed or altered when input into
the computer; participants will be assigned a fictitious-name to protect their identity;
• There will be no identifying information included in the final study findings; however
personal experiences shared may be familiar to people you know;
• The final study will be published as a thesis and potentially published in relevant
journals and other publications, or presented at conferences. No information that
could identify participants will be included in the final study. Every effort will be
made to present and/or change information you provide such that it is not
identifiable as coming from you;
• Participants can decline to answer any questions that they do not feel comfortable
with, can decline to complete the interview, and can ask that any information they
have provided be removed from the study at any time during the interview process;
• At any time a participant is emotionally distressed they will be provided with a
referral to appropriate services that can provide counselling or support through the
following: Community Counselling: 250-774-8105.
• If a research participant discloses information about a senior who has been harmed or
neglected, the researcher will explain that she has to share the information with
Elderly Services, and encourage the participant to call and report the information
themselves. If the participant does not report the information, the researcher will call
and report the information.

Dementia and Northern Caregiving

106

Benefits
There are many potential benefits to participating in this study. Participants will have
the opportunity to explore their experiences with informal care provision, and consider what
worked for them and what did not work. This may provide participants with a better
understanding of their own needs as caregivers, and help them express those needs. Through
this study, participants will have the opportunity share their experience of caring for
individuals with dementia in a northern context. Participants will help this researcher, and
future researchers, to better understand caregiving for an individual living with dementia, in a
northern remote town in British Columbia, possibly resulting in positive policy or service
changes.
Participants can request and receive a copy of the study from this researcher when it
is completed. Should participants require further information before, during, or after the
study they can contact the student researcher Julie Wade by email at wade@unbc.ca or cell
phone 250-617-6334, or my thesis supervisor, Dawn Hemingway, MSW, MSc, RSW by
email at hemingwa@unbc.ca or phone 250-960-5694. Any complaints about the research
project should be made to the Office of Research, University of Northern British Columbia
250-960-5650, or by email reb@unbc.ca

Dementia and Northern Caregiving

107

Appendix G
Poster Advertising for Informal Caregivers

UNBC graduate student is looking for informal caregivers
(e.g., spouses, family members, or friends) who are
currently or have previously provided care to an
individual with Alzheimer's disease or other related
dementias in the Northern Rockies District and who are
willing to be interviewed.
This graduate student research is about the experience of caregivers caring for an
individual with Alzheimer's disease or other related dementias. The researcher is interested
in talking to caregivers about their experiences providing care for an individual living with
dementia in Northern Rockies District.

What do you have to do?
Contact the student researcher either by email or phone using the contact information
provided below to arrange an interview.
How much time will it take?
Each interview will take about an hour to an hour and a half.
Where will the interview take place?
The interview will take place at a safe location in the community. This location will be
decided on by the participant and the researcher.
Information shared for the purpose of this study will be kept confidential.

Contact Julie at cell number: 250-617-6334
email: wade@unbc.ca

Dementia and Northern Caregiving

108

Appendix H
Informed Consent Form: Informal Caregivers
I understand that I am agreeing to participate in a research study.

• Yes

• No

I have myself read, or the researcher has read the attached information sheet to me

• Yes

• No

• Yes

• No

• Yes

• No

I understand the benefits and risks involved in participating in this study.

• Yes

• No

I understand that the researcher is obligated to maintain my confidentiality, and

• Yes

• No

• Yes

• No

• Yes

• No

• Yes

• No

• Yes

• No

and I have received a copy.
I understand that the researcher will record some information by hand on a form,
and that the interviews will be voice recorded.
1 have had the opportunity to ask questions and discuss the study with the
researcher.

that no personally identifying information will be used in the final thesis report.
I understand that only the student and her supervisor committee (who are all
obliged to respect your confidentiality) will have access to identifying information
about me, and will be using fictitious names to protect my identity.
I understand that if I disclose information about a concern for the safety of an
individual, that the researcher has a legal duty to report that information to Adult
Protection Services, located in Mental Health in Addiction with Northern Health.
Do you wish to be contacted to review the focus group transcript and a copy of the
preliminary results?
If so, please leave contact information below:

I understand that my participation in this study is voluntary and I can withdraw
from the study at any time.
This study was explained to me by: Julie Wade, Master of Social Work Student
I agree to take part in this study:

Signature of Research Participant

Date:

Printed Name of Research Participant

1 believe that the person signing this form understands what is involved in the study and voluntarily
agrees to participate.
Date:
Signature of Researcher

Dementia and Northern Caregiving

Appendix I
Demographic Interview Questions: Formal Caregivers
1) What is your age?
• 19-25 yrs

• 56-65 yrs

• 26-35 yrs

• 66-75 yrs

• 36-45 yrs

• over 75

• 46-55 yrs
2) What is the highest level of education you have completed?
• Elementary School
• Middle school/Junior High School
• High School Diploma
• Some post secondary
•

Towards what degree, certificate, diploma?

• Graduated post secondary institution
•

What degree, certificate, diploma?

3) What is your current occupation?
• Social Worker
• Support Worker
•Care-Aide
• Licensed Practical Nurse (LPN)
• Registered Nurse (RN)
• Registered Psychiatric Nurse (RPN)
• Other
4) What is your ethnicity?

(please specify)

109

Dementia and Northern Caregiving

• First Nations
• Metis
• Inuit
• Asian
• Caucasian
• Other

(please specify)

5) What is your annual household income?
• less than $15,000
• $15,000-$24,999
• $25,000 - $39,999
• $40,000 - $59,999
• $60,000 or more
6) Are you currently employed?
• yes
• no
7) If you are currently employed, what is your employment status?
• Full-time
• Part-time
• Casual
• Shift work
• Other
8)

(please specify)

What area of the Northern Rockies District do you live in?

110

Dementia and Northern Caregiving

Appendix J
Demographic Interview Questions: Informal Caregivers
9) What is your age?
• 19-25yrs

• 56-65 yrs

• 26-35 yrs

• 66-75 yrs

• 36-45 yrs

• over 75

• 46-55 yrs
10) What is the highest level of education you have completed?
• Elementary School
• Middle school/Junior High School
• High School Diploma
• Some post secondary
•

Towards what degree, certificate, diploma?

• Graduated post secondary institution
•

What degree, certificate, diploma?

11) What is your relationship status to the individual you are providing care for?
• Married

•Living Common-Law

• Separated

• Child

• Divorced

• Relative

• Widowed

• Friend

• Other

(please specify)

12) What is your ethnicity?
• Asian

• First Nations
• Metis

• Caucasian

• Inuit
• Other

(please specify)

111

Dementia and Northern Caregiving

13) What is your annual household income?
• less than $15,000
• $15,000-$24,999
• $25,000 - $39,999
• $40,000 - $59,999
• $60,000 or more
14) Are you currently employed?
• yes
• no
15) If you are currently employed, what is your employment status?
• Full-time
• Part-time
• Casual
• Shift work
• Other

(please specify)

16) What area of the Northern Rockies District do you live in?

Dementia and Northern Caregiving

113

Appendix K
Focus Group Questions: Formal Caregivers
Tell me about your positive experiences providing care to persons with dementia in
Northern Rockies District?
a. What makes it a positive experience?
Tell me about the challenges to providing care to persons with dementia in Northern
Rockies District?
a. What are the strategies used to overcome the challenges in providing care?
What recommendations do you have regarding dementia care and caregiving services
in this community?

Dementia and Northern Caregiving

114

Appendix L
Semi-Structured Interview Questions: Informal Caregivers
1. Tell me about when your loved one was first diagnosed with dementia?
a. What was it like?
b. What steps did you take after you learned of the dementia diagnosis?
2. Tell me about your relationship with the individual who has/had dementia?
3. Tell me about your positive experience(s) providing care for a loved one with
dementia?
a. What makes it a positive experience?
4. Tell me about some of your challenges providing care for a loved one with dementia?
a. What strategies did/do you use to overcome the challenges, if any?
5. Have you had to make sacrifices to provide care for your loved one with dementia?
a. If so, what are the sacrifices you have had to make?
b. If no, how do you continue meeting your own needs?
6. What services have you accessed to help support you as a caregiver?
7. What recommendations would you make to other caregivers?
8. What are your top 3 suggestions to help support you as a caregiver?
9. Is there anything else you wish to tell me about your experience with caring for a
loved one with dementia?