NARRATIVE INFLUENCES ON NORTHERN BC WOMEN’S EXPERIENCES OF
CARING FOR A SPOUSE WITH DEMENTIA
by
Karen Koning
B. A., Trinity Western University, 2010
B.S.W., University of Northern British Columbia, 2013

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

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
December 2017
© Karen Koning, 2017

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Abstract
This thesis explores the ways in which older women use reminiscence as a coping
strategy while caring for a spouse with dementia. A sample of six women living in Prince
George, British Columbia (BC) participated in one to two hour semi-structured interviews.
Participants were asked about their caregiving experiences, their reminiscence experiences, and
how reminiscing has influenced their ability to cope with caregiving. All participants reported
engaging in reminiscence to some extent and that reminiscing had a positive effect on their
ability to cope with caregiving. Participants reminisced simply to remember positive experiences
and reminisced purposefully to make sense of their circumstances, make decisions, or solidify a
sense of identity. While further research is needed to determine how social workers and other
professionals can encourage positive forms of reminiscence, it appears that caregivers are
already making use of reminiscence as a coping tool.

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Table of Contents
Abstract .................................................................................................................................................... 2
Table of Contents .................................................................................................................................. 3
List of Tables .......................................................................................................................................... 5
Acknowledgements .............................................................................................................................. 6
Chapter One: Introduction................................................................................................................. 8
Situating Myself Within the Research ........................................................................................ 9
Chapter Two: Literature Review .................................................................................................. 12
Definitions ................................................................................................................................. 12
Dementia Caregiving ................................................................................................................. 14
Dementia ..................................................................................................................................................................... 14
Dementia Caregiving ............................................................................................................................................. 14
Caregiving and Gender/Spousal Roles .......................................................................................................... 15
Interventions for Caregivers in Distress ....................................................................................................... 18

Narrative Therapies ................................................................................................................... 20
Narrative Therapy........................................................................................................................................................ 20
Reminiscence Therapy ............................................................................................................................................... 21
Narrative Gerontology ............................................................................................................................................... 24

Putting it All Together: Where This Research Fits ................................................................... 26
Chapter Three: Methodology ..................................................................................................... 27
Research Methodology ......................................................................................................................................................... 27
Participant Recruitment ..................................................................................................................................................... 28
Data Collection ........................................................................................................................................................................ 29
Data Analysis ............................................................................................................................................................................ 30
Trustworthiness and Transferability ............................................................................................................................. 32
Ethical Considerations .......................................................................................................................................................... 35

Chapter Four: Research Findings ............................................................................................. 37
Demographic Information................................................................................................................................................... 37
Codes and Themes .................................................................................................................................................................. 38
The Experience of Caregiving ............................................................................................................................................ 40

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The Role of Caregiver ............................................................................................................................................ 40
The Challenges and Struggles of Caregiving................................................................................................ 44
Womanhood, Caregiving and Domestic Abuse .......................................................................................................... 47
The Uniqueness of Caregiving as a Woman ................................................................................................. 47
Caregiving and Domestic Violence .................................................................................................................. 48
Finding Help and Making Meaning .................................................................................................................................. 51
Reminiscence: Remembering and Reflecting ............................................................................................. 52
Help From Others.................................................................................................................................................... 56
General Strategies ................................................................................................................................................... 62

Chapter Five: Discussion and Conclusion ................................................................................. 64
Contribution to the Research ............................................................................................................................................. 64
Finding Comfort in Good Memories ................................................................................................................ 65
Reminiscing to Make Sense of Circumstances ............................................................................................ 67
Integrative Reminiscence, domestic violence and trauma ................................................................... 68
Reminiscing to solidify identity ........................................................................................................................ 70
Limitations ................................................................................................................................................................................. 72
Recommendations for Further Research ..................................................................................................................... 74
Implications for Practice ...................................................................................................................................................... 75
For Health Care Providers ................................................................................................................................... 76
For Social Workers ................................................................................................................................................ 77
Conclusion .................................................................................................................................................................................. 78

References .................................................................................................................................... 80
Appendix A: Participant Information Letter ........................................................................... 86
Appendix B: Participant Consent Form.................................................................................... 89
Appendix C: Participant Recruitment Poster .......................................................................... 90
Appendix D: Demographic Information Form ......................................................................... 91
Appendix E: Interview Guide..................................................................................................... 92
Appendix F: Community Resource List .................................................................................... 94
Appendix G: Research Ethics Board Certificates ................................................................... 95

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List of Tables
Table 1: Demographic Information ............................................................................................... 38
Table 2: Themes ............................................................................................................................ 39
Table 3: Explanatory Phrases ........................................................................................................ 63

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Acknowledgements
First and foremost I would like to thank those who chose to participate in this study. Each
of the women I interviewed invited me into their stories in a special way. I am exceedingly
grateful that they trusted me with their stories and invited me into their homes. I have done my
best to honour those stories in what I have written here.
I also owe a great deal of thanks to my thesis supervisor Professor Dawn Hemingway of
the School of Social Work at the University of Northern British Columbia. Her guidance through
the thesis process and support along the way was invaluable. Dr. Joanna Pierce (UNBC School
of Social Work) also went above and beyond in supporting me throughout my degree. In
particular, her instruction and encouragement while I worked in the Family Support Program
helped me grow as a professional and learn to work with a broader array of clients. Finally, Dr.
Lela Zimmer (UNBC School of Nursing) provided valuable feedback and helped me to see my
research from a cross-disciplinary perspective. I appreciate her thoughtful feedback and
encouragement throughout the process.
In addition to my committee’s feedback, my good friend Glenda Brommeland also
provided feedback on my written work from the perspective of a woman who has cared for a
spouse with dementia in the past. I am sincerely thankful for her help in that area.
I would also like to thank my family and friends for their support through all of the
inevitable frustrating and exciting moments of the thesis processes. In particular, I would like to
thank my office mates who traded stories of theses in vastly different disciplines and still always
managed to find common ground.
Last but certainly not least; I would like to thank Dr. Monica Hilder (Professor of
English, Trinity Western University) for introducing me to the idea that literature and story can

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influence the way we understand our lives. I would also like to thank Dr. Kimberly Franklin of
the School of Education at Trinity Western University for her belief in me when I didn't believe
in myself. I will never forget the day she suggested that graduate school was in my future. I
didn’t believe her then, but she was right as she almost always is!

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Chapter One: Introduction
Caring for a partner with dementia is a tremendous undertaking. As the disease
progresses, the caregiving partner (in most cases a woman) takes on an increasing number of
tasks. Often spouses assist with personal and medical care in addition to taking on household
chores that were previously completed by the partner with dementia. The resulting stress has
been associated with increased rates of depression and other mental health concerns (Butler,
Turner, Kaye, Ruffin, & Downey, 2008). Recent data indicates that caregivers are more likely to
experience distress if they are caring for a spouse and are at even greater risk if they live in the
same home as their spouse (Mackenzie, 2017). Research in narrative therapy, reminiscence
therapy, and most recently narrative gerontology, has revealed that individuals under stress
benefit from thinking and talking about their life stories and that older adults may be especially
predisposed to engage in and benefit from narrative reflection. However, the vast majority of this
research involves clients with dementia or those living in residential care (Randall & McKim,
2004).
This study specifically investigated how dementia caregivers interact with their personal
stories in relation to their roles as caregivers for their partners. The stated research question was:
How do older women’s life stories influence their experiences and perceptions of caring for a
spouse with dementia? Since this population is cognitively intact, the study examined the way
older women naturally think about their personal stories rather than employing structured
narrative or reminiscence therapy. Participants were invited to participate in semi-structured
interviews during which connections between their life stories and their role as caregivers were
explored. Their responses illuminate the ways in which women perceive and cope with caring for
a partner with dementia through the lens of their life stories.

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Situating Myself Within the Research
As Patton (2015) and Berger (2013) note, it is important for researchers to be aware of
their own perspectives throughout the research process. They explain that reflexivity can help
mitigate any possible bias introduced by the researcher’s personal beliefs, experiences, or
characteristics. A reflexive researcher will examine these areas regularly and determine whether
changes are needed to minimize bias or undue influence on the research. In contrast, Berger
(2013) also describes how her personal knowledge and experience led her to discover things she
might otherwise have missed. Before beginning this research, I reflected on the many areas
where my knowledge or experience could be either helpful or detrimental to the research process
and planned how to address each potential challenge.
First, I acknowledged that I have substantial experience working with older adults,
including personal experiences, volunteer work, and professional practice. In a professional
capacity, I have worked in Long-Term Care and Convalescent Care (temporary residential care).
My primary role in these settings has been advocacy. This experience helped me to ask
meaningful questions and understand the settings that participants described. However, it was
important to work reflexively to prevent the assumption that participants had similar experiences
and opinions to my own. This was done through journaling and a recursive research process.
This is described in further detail in Chapter 3.
I also came to the subject of narrative therapy from a unique perspective because I have
an academic background in English Literature. Studying literature taught me that viewing real
life as a story can provide valuable perspective. I learned that instead of seeing negative events in
isolation, they could be interpreted in light of how they might create or demonstrate personal
growth. Difficult situations also had the potential to open up new possibilities (or storylines).

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This gave narrative work a deeply personal meaning for me.
Additionally, I recognized that I am different from my participants in many ways. Since I
am much younger than my participants, I was aware that they might feel the need to protect me
from negative responses or to be overly-helpful. Also as a young, white, middle-class, educated
woman, I knew that my life might differ from participants in other ways. That meant I would
need to be open to learning about and from these differences.
Each of these experiences added to my perspective. As I began my formal research, I felt
both empathy and a sense of responsibility to find tools that help older women see themselves in
new and empowering ways. My personal experiences gave me a template for the ways that
stories can help accomplish these goals. However, I was aware that my strong feelings about this
concept could act as a blind spot.
I decided to use several one-on-one semi-structured interviews as my primary method of
investigation, which meant that my personal biases had the potential to influence participants’
responses. However, it also allowed me to interact directly with my participants and ask follow
up questions to ensure that I understood their responses. In order to balance the challenges and
benefits of the interview process, I was particularly vigilant about bias when I developed the
interview guide. I deliberately built a certain amount of doubt and openness into each question to
ensure that my initial questions did not communicate an expectation of a particular response.
(See Appendix E). This was important because I am a younger researcher and I was aware that
participants might find it difficult to give negative responses particularly if they were not
specifically requested. I expected that some of my participants would not view narrative the
same way that I did. While I knew that it was impossible to completely avoid my personal
biases, I hoped that careful wording of the interview questions would help me to limit the degree

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to which I communicated my own biases to participants.
My personal experiences with this population, my topic, and my personal characteristics
were a double-edged sword in this study. They motivated me toward useful results and
meaningful conclusions as well as being a source for potential pitfalls. However, with careful
reflection and preparation, I believe I have avoided these pitfalls and reaped the benefits of my
experiences just as Berger (2013) describes in her research.

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Chapter Two: Literature Review
Definitions
The following key terms are used throughout this thesis:
a) Reminiscence – The process of thinking or talking about past experiences (Sherman, 1991).
b) Integrative Reminiscence – The process of reminiscence for the purpose of finding a “sense of
self-worth, coherence, and reconciliation” between the past and present (Wong &Watt, 1991, p.
273).
c) Reminiscence Therapy – A therapeutic modality in which a client tells a social worker or
counsellor stories from their life experience with the purpose of finding or reinforcing a sense of
meaning in life. Reminiscence therapy is used primarily with older adults and can take place oneon-one or in a group setting (Barker, 2014).
d) Narrative Theory – “…any theory of consciousness stating that beliefs arise as part of an
explanatory narrative about oneself and society” (VandenBos, 2007, p. 609).
e) Narrative Therapy – “treatment for individuals, couples, or families that helps clients
reinterpret and rewrite their life events into true but more life-enhancing narratives or stories”
(VandenBos, 2007, p. 609). This typically involves ongoing therapy and written homework
assignments (Barker, 2014).
f) Narrative Gerontology – A theoretical framework for studying aging and related issues
through a narrative lens. Narrative gerontology seeks to understand the “ways in which stories
function in our lives, as well as how we ourselves function as stories” (Kenyon & Randall, 2001,
p. 3-4).
g) Coping skills – Strategies or behaviours individuals use to effectively respond to stressful
situations. The term “coping strategies” can be used interchangeably (Barker, 2014).

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h) Older Adults – In Canada, an older adult is most frequently defined as a person 65 years of
age or older. This definition will be used for the purposes of this study in order to allow for
consistency with other research (N. Chappell, McDonald, & Stones, 2008). The term “older
people” is used interchangeably with “older adults” throughout this document.
i) Family Caregiver – Family members of a person with dementia who provide some level of
care for the person with dementia. Caregiving occurs on a spectrum and includes caregivers who
provide help with activities of daily living as well as those who support and advocate for family
members in long-term care. The terms “caregiver” and “dementia caregiver” have also been used
interchangeably throughout this thesis.
j) Partner – A person who is connected to another through marriage, cohabitation, or long-term
relationship (Oxford English Dictionary, 2016).
A note of the use of the terms “spouse,” “partner,” “husband,” and “wife”: The term “partner”
was chosen when writing about previous research and research methods as it is more inclusive
than the word “spouse,” which implies traditional marriage. However, the term “spouse” was
used during initial interactions with participants since that language was likely to be more
familiar to them. Participants quickly expressed their preference to use the words “husband” and
“wife” in addition to “spouse” and “partner” when talking about their partners. Therefore these
terms were incorporated into the language used when reporting and discussing the study’s
findings.
k) Domestic Violence – The violence or abuse that happens “within a marriage, common-law or
dating relationship” including the abuse of ex-partners (Department of Justice Canada, 2017).
l) Long-Term Care – A residential facility providing 24-hour nursing care for patients who are
no longer able to live at home. Services provided in long-term care include medical care,

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medication management, meals, assistance with activities of daily living, and recreation
opportunities (Northern Health, 2016b). The terms “residential care,” “care facility,” and
“nursing home” are also used to describe this type of care because participants used a variety of
terms to discuss institutional care.
Dementia Caregiving
Dementia. Dementia is an umbrella term for a set of diseases characterized by continual
cognitive decline. The most common types of dementia include Alzheimer’s disease, vascular
dementia, Lewy Body dementia, and frontotemporal dementia (Cunningham et al., 2015).
Diagnosing dementia can be difficult and time-consuming and is often a stressful process for
individuals with dementia and their families. By the time symptoms of dementia are significant
enough to merit medical intervention, the person with dementia has often already begun to need
assistance from family members to compensate for cognitive problems (Cunningham et al.,
2015).
Dementia caregiving. The person or persons who provide day-to-day support for a
family member with dementia are referred to in the literature as “caregivers,” “dementia
caregivers” or “family caregivers.” For the purposes of this research these terms will be used
interchangeably. Caring for a family member with dementia is a tremendous undertaking.
Dementia caregivers may assist family members with dementia while living in the same home,
through frequent visits or remotely from a different community. The person with dementia may
be living in the community (alone or with their caregiver), in assisted living, or in a long-term
care facility. Many caregivers provide care through a continuum of settings as the disease
progresses (Montgomery & Kosloski, 2009).
Providing care for a person who is experiencing progressive cognitive decline can be

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extremely stressful. In fact, multiple studies have shown that family caregivers experience higher
rates of depression than the general population (S. Butler, Turner, Kaye, Ruffin, & Downey,
2008). Such statistics have led to a research emphasis on “caregiver burden,” a term used to
describe the perception that caregiving generally has a negative effect on caregivers (S. Butler et
al., 2008). However, more recent research has established that many caregivers view caregiving
as satisfying and meaningful work. In fact, caregivers see themselves as important advocates in
their loved ones’ care (Clissett, Porock, Harwood, & Gladman, 2013). There is some evidence
that both depression and caregiver burden are more closely associated with factors such as social
support, health, personality, age and social expectations than with the work involved in
caregiving (S. Butler et al., 2008; N. L. Chappell & Dujela, 2009; Navaie-Waliser et al., 2002).
A common thread in dementia caregiving stories is change. Dementia is a progressive
disease and patients require progressively more assistance to function in daily life. While
caregivers are faced with an increasing number of caregiving tasks, they also experience ongoing
changes in their relationship with the person with dementia. As the disease progresses caregivers
assist with more personal tasks like personal hygiene. Simultaneously, the social and emotional
aspects of the relationship are changing. The person with dementia is less and less able to
contribute to meaningful conversations and provide emotional support. This drastic yet often
slow change in the relationship can evoke powerful emotions for caregivers. However, their
experience of caregiving and its impact on their wellbeing may well depend on their ability
accept and cope with the change (Montgomery & Kosloski, 2009; Sanders & Corley, 2003).
Caregiving and gender/spousal roles. Nowhere is relationship change more intense for
caregivers than when a caring for a partner or spouse. Many older couples have been together for
decades and have established roles in their relationships. Their partnerships become a part of

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their identities both individually and as couples (Carpenter & Mak, 2007; Hayes, Boylstein, &
Zimmerman, 2009). Men and women caring for a partner with dementia must adapt to their
changing roles in the relationship. On the most basic level, these caregivers gradually pick up
tasks that their partners are no longer able to complete. At first, these may be relatively
straightforward tasks that the person with dementia can no longer do. For example, the caregiver
may begin scheduling medical appointments and paying bills. The caregiving partner may not
label these tasks as caregiving or identify them as particularly difficult (Hayes et al., 2009).
However, apart from the energy and time needed to complete specific tasks, there is an
emotional component of caregiving that begins even before the tasks seem difficult. It can be
hard to acknowledge that a partner cannot complete tasks that have always been their domain. If
the partner with dementia is unable to fulfill aspects of their usual role in the relationship, there
may be a sense of loss with each task the caregiver takes on (Hayes et al., 2009). Furthermore,
the caregiver may feel a responsibility to protect their partner’s identity within the relationship.
This type of caregiving work is sometimes called “preservative care” (Hemingway, MacCourt,
Pierce, & Strudsholm, 2014; Jansson, Nordberg, & Grafström, 2001).
“Preservative care” refers to any aspect of caregiving that is intended to maintain the
identity of the person with dementia. Related tasks vary and can include assisting the person to
complete tasks that have always been a part of their role in the home or grooming the person so
that they look as similar as possible to the way they looked before diagnosis. Often preservative
caregiving has a gendered overlay in which wives help their husbands to maintain masculine
roles and physical characteristics, while husbands help their wives to maintain feminine roles and
appearances (Calasanti & Bowen, 2006).
Maintaining the gendered identity of a partner (who is frequently of the opposite gender)

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is only one way that men and women’s experiences with caregiving differ. Initially, women may
take on caregiving tasks more naturally, particularly when tasks are a continuation of regular
household responsibilities or are quite similar to caring for children. However, since many older
couples have traditionally divided tasks by gender, female caregivers may need to learn tasks
like yard maintenance and managing finances for the first time. While men may find traditionally
feminine tasks equally difficult, they are more likely to ask for outside help than women
(Eriksson, Sandberg, & Hellström, 2012). Women tend to feel a sense of responsibility to care
for their husbands independently and a sense of failure if they are unable to do so. In contrast,
men are more comfortable with asking for and sometimes even paying for help. This may be due
to cultural expectations that women, who have previously cared for children, should also be able
to care for an ill partner (Eriksson et al., 2012).
Furthermore, women tend to struggle more acutely with the loss of emotional intimacy as
the disease progresses and their partner is less able to communicate on an emotional level.
Because women tend to associate caregiving with mothering, they are more likely to view a
partner with dementia as childlike. Therefore, women may sooner feel they have lost their
partner (or at least the person they used to be) and feel alone in coping without their partner’s
support (Hayes et al., 2009).
Other factors can make caring for a partner even more challenging. For example, lesbian,
gay, bisexual, and transgender (LGBT) couples may face a unique set of challenges if their
relationship is not legitimized by health care providers. These caregivers may spend limited
emotional resources explaining their relationships and advocating for their rights rather than
providing direct care (Carpenter & Mak, 2007)
In addition, approximately 2% of older women experience physical abuse from their

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partner and 32% experience emotional abuse. Older women are more likely to stay in abusive
relationships, more likely to be financially dependent on their partner, and more likely to keep
abuse secret. When there is a history of domestic violence, women may feel a moral or social
obligation to care for their abuser even if they are still at risk. They may also be more likely to
experience emotional and psychological distress related to caregiving (Calasanti & Bowen, 2006;
Roberto, McPherson, & Brossoie, 2014).
There is evidence to suggest that domestic violence frequently continues and even
increases when the abusive partner becomes seriously ill (Montminy, 2005). Domestic violence
can have long-term effects on older women including ongoing medical and mental health
problems (Roberto, McPherson, & Brossoie, 2014). If they do choose to seek help, many women
will struggle to find appropriate support because services for victims of domestic violence are
predominantly geared toward young women. To make matters worse, services for seniors are
often unprepared to cope with issues related to domestic violence (Roberto, McPherson, &
Brossoie, 2014).
Interventions for caregivers in distress. In British Columbia, most government services
that support individuals with dementia and their caregivers are provided through the health care
system. These interventions are mainly practical or medical in nature and focus on providing
direct care for the person with dementia. Services include home support, respite care, assisted
living, and residential care in addition to regular medical care (Northern Health, 2016a).
However the number of hours of home support provided to BC seniors has decreased in recent
years and the cost for those services has risen (Mackenzie, 2017). In many communities, local
organizations provide practical support including, Meals on Wheels, housekeeping, and
volunteer visitors (Alzheimer Society of Canada, 2016). The Alzheimer Society takes a different

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approach. They provide many of their services directly to caregivers including individual
support, caregiver support groups, and information sessions for caregivers (Alzheimer Society of
Canada, 2015).
Narrative Interventions. Although they are not formally provided in BC, narrative
therapies in general (and Reminiscence therapy in particular) have been shown to ease
depression in clients with dementia. Reminiscence has been used most frequently in institutional
settings where clients with dementia are assisted to reminisce as part of social and wellness
programs. However, this opportunity has rarely been extended to the caregivers. A limited
number of studies have involved caregivers participating in reminiscence activities alongside
their family members with dementia (Fletcher & Eckber, 2014; Lepp, Ringsberg, Holm, &
Sellersjo, 2003; Kellet, Moyle, McAllister, King, & Gallagher, 2009; Quinlan & Duggleby,
2009).
In addition, several studies have explored the use of life-story review with couples in
which one person had dementia. Haight et al. (2003) asked couples to create life-story books
using words, pictures, and other items identified as significant by the participants. Similarly,
Fletcher and Eckber (2014) used visual art to help couples tell their stories. Kellet et al.’s (2009)
research involved paid and family caregivers in creating biographies of the person with
dementia. Two research teams also employed drama in the storytelling process (Lepp et al.,
2003; Quinlan & Duggleby, 2009). In each of these studies, caregivers experienced a decrease in
feelings of burden and increased feelings of hope. They were also more likely to perceive the
person-with-dementia’s quality of life as positive. Regardless of the storytelling modality,
positive psychosocial outcomes were reported for all participants including caregivers. However,
there are no published studies in which caregivers discussed or created artifacts related to their

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life stories independently from their partners.
Narrative Therapies
Research into reminiscence as a therapeutic intervention can generally be divided into
three fields: narrative therapy, reminiscence therapy, and narrative gerontology. Research in
narrative therapy typically focuses on specific therapeutic methods to be used in individual
counselling. The older adult population is rarely addressed in narrative therapy. In contrast,
reminiscence therapy research focuses exclusively on the older adult population and typically
uses more flexible methods to encourage reminiscence. However, the majority of reminiscence
research involves older adults with dementia or cognitive impairment. Finally, narrative
gerontology addresses the theories surrounding narrative work with older adults more broadly
and provides space for both theoretical and practical research into the effects of reminiscence on
older adults. Together these areas of research frame our current understanding of reminiscence in
relation to older adults.
Narrative therapy. Michael White and David Epston’s (1990) development of Narrative
Therapy in the 1980s and 90s began a conversation about the way we view our lives as stories
and use stories to find meaning in our lives. Narrative Therapy is a type of formal talk therapy in
which the client and therapist tell and retell stories from the client’s life in order to find themes,
identify positive coping strategies, and reframe problems to help the client approach them
differently. Narrative therapy encourages clients to tell and retell their stories in order to gain
perspective and find new meanings in the events and problems of their lives. This typically
means spending a large amount of time with a therapist telling and re-telling stories (White &
Epston, 1990).
Narrative therapy has been used with various populations and has been demonstrated as

21
effective in treating depression and other mental health problems. It is most often used with
young to middle aged adults and has been adapted for use with couples, families, and groups.
However, there is little research investigating whether traditional Narrative Therapy is helpful
for older adults or if they are able to access it with any consistency (Bohlmeijer & Westerhof,
2011).
There are few studies involving narrative therapy and older adults. The majority of
researchers who do study older people adapt therapeutic techniques to better match the age or
situation of the clients involved. For example, Böttche, Kuwert, and Knaevelsrud (2012),
describe Integrative Testimonial Therapy (ITT), which is a form of short-term writing therapy
for older adults with Post-Traumatic Stress Disorder. Other adaptations are much more similar to
reminiscence therapy and they are discussed later in this thesis.
Overall, there has been very little research on the use of narrative therapy with older
adults. However, narrative therapy as described by White and Epston (1990), is often a long and
expensive process. There is some evidence that narrative therapy feels frustrating and repetitive
rather than helpful for some seniors (Bohlmeijer & Westerhof, 2011). In particular, older
participants sometimes expressed frustration with the process of telling and retelling stories.
They felt they were being asked to retell the same story again and again rather than making
therapeutic progress (2011). It appears that the traditional methods used in narrative therapy may
not be the best fit for this population. Therefore, exploration of other story-based therapies seems
to be a logical step.
Reminiscence therapy. Reminiscence therapy is more organic in nature than with
narrative therapy. When Robert Butler first discussed the concept of reminiscence in 1963, his
work was in response to the common view at the time that reminiscence in old age was a

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negative psychiatric symptom. Butler (1963) saw reminiscence as a natural part of growing older
and a way of solidifying a sense of identity. In fact, he saw reminiscence as an essential part of
emotional healing for older adults. Reminiscence therapy grew out of Butler’s work. In essence,
it is the practice of encouraging older adults to engage in positive reminiscence (R. Butler, 1963).
Researchers began investigating the efficacy of reminiscence therapies soon after Butler’s
(1963) initial paper. The first studies were published between 1969 and 1981. These initial
studies were conducted in institutional settings and demonstrated that participants in
reminiscence groups experienced an increased sense of wellbeing. In the intervening three
decades, many studies have found reminiscence therapy to be associated with improved selfesteem and wellbeing as well as decreased symptoms of depression (Korte, Bohlmeijer, & Smit,
2009). However, outside of the research context, reminiscence therapy is most often used with
individuals who have dementia and are residing in institutional settings.
The limited use of reminiscence therapy in practice is troubling because older adults
experience higher rates of depression and anxiety than younger people and reminiscence therapy
has the potential to alleviate those symptoms (Canadian Coalition for Seniors’ Mental Health,
2006). This population is notably less comfortable with traditional interventions such as
cognitive behavioural therapy and is less likely to access and benefit from such therapies. In
contrast, reminiscence therapies parallel the way many older adults naturally reflect on their
lives. This makes reminiscence therapies more relatable to older adults. In turn, they are more
likely to participate in and benefit from therapy (Korte et al., 2009).
Butler (1963) describes reminiscence as beginning with the simple everyday action of
reflecting on past experience. In its most basic sense, it is the time a person spends thinking
about their experiences in life. Even this reminiscence can serve varied purposes and either

23
positively or negatively affect mood and wellbeing. Webster (1994) identified four types of
reminiscence: identity developing, instrumental (problem-solving), bitterness revival, and
boredom reduction. The identity developing type uses reminiscence to clarify a sense of self and
solidify personal characteristics. Instrumental reminiscence involves using memories as tools to
help solve problems by remembering coping skills used in the past. Bitterness revival refers to
ruminating on negative past experiences. Finally, boredom reduction consists of remembering
and romanticizing past experiences as a way to escape the present. Both instrumental and
identity developing reminiscence have positive psychological effects as they focus on useful
ways to incorporate memories into present situations. Conversely, bitterness revival and
boredom reduction are associated with a decreased sense of wellbeing (Korte et al., 2009).
Wong and Watt (1991) developed a similar typology to describe various types of
reminiscence. They identified six types of reminiscence 1) integrative reminiscence, 2)
instrumental reminiscence, 3) transmissive reminiscence, 4) escapist reminiscence, 5) obsessive
reminiscence, and 6) narrative reminiscence. Integrative reminiscence refers to looking back
over one’s life in an effort to better understand how events relate and see personal growth over
time. The instrumental type involves looking back with the purpose of using past experience to
problem-solve or reflect on past achievements in an effort to establish confidence in coping with
present challenges. Transmissive reminiscence means sharing memories and wisdom with others
while escapist reminiscence occurs only as a way to avoid the present. Obsessive reminiscence
refers to the maladaptive tendency to obsess over negative memories. Finally, narrative
reminiscence identifies any memories that seemed only to provide information to the person
listening. This was the least understood type. In Wong and Watt’s (1991) typology, integrative
and instrumental reminiscence were considered to be the most therapeutic forms of

24
reminiscence.
Reminiscence therapies operate along a continuum. In group settings where participants
have been diagnosed with dementia, reminiscence may be as simple as sharing positive
memories with other group members. In this case, the only goal may be for individuals to
experience positive emotions while the activity is in progress. Depending on the progression of
dementia, clients may not be expected to recall reminiscence sessions after they are finished. A
much more complex form of reminiscence involves the creation of a life story book (either in
written or artistic format) created over several weeks. This process is typically overseen by a
therapist and, in the case of a client with dementia, will involve information from family and
friends.
Narrative gerontology. In contrast to narrative and reminiscence therapies, narrative
gerontology is a theoretical framework rather than a specific therapeutic tool. Narrative
gerontology seeks to study aging and related issues through a narrative lens and understand the
“ways in which stories function in our lives, as well as how we ourselves function as stories”
(Kenyon & Randall, 2001, p. 3-4). Therefore the theory begins with the assumption that story is
a natural part of how we make meaning of our lives as we age. This leaves room for a much
more organic way of exploring narrative as a path toward healing.
Narrative gerontology is a relatively new theoretical approach. Therefore, there is less
research to draw on than with similar theories of aging. However, because narrative gerontology
deals specifically with the natural relationship between aging and reminiscence, much of the
literature is particularly relevant to this study.
From a theoretical perspective, narrative gerontology begins with the premise that we
understand the events in our lives similarly to the way that we understand stories. We engage

25
with our stories in many ways since we are simultaneously author, character, and critic of our
personal stories. Because our stories are so important to us personally, we imbue them with a
great deal of meaning. Even without being consciously aware of the process, we see “plot, genre,
metaphor, symbolism, and theme” in our experiences (Randall & McKim, 2004, p. 239). While it
seems implausible at first that ordinary people interpret their stories in such a literary way, the
reality of this process is often much more subliminal, and simple. It is impossible to have any
experience in life without assigning some sort of meaning to it. Narrative gerontologists, use the
literary metaphor to explain how this happens (Randall & McKim, 2004).
Narrative gerontology also understands that the story of our lives is in one sense a fictional
one. It is the story of how we choose to remember and interpret past events as much as it is a
story of facts. That makes it possible to reinterpret or better understand our experiences in ways
that are more helpful or empowering. This aspect of narrative gerontology closely overlaps with
narrative therapy (Kenyon, 2003; Randall & McKim, 2004). Narrative gerontology suggests that
older people who actively engage in finding meaning in their life stories are better able to cope
with the challenges of aging (Kenyon & Randall, 2001; Randall & McKim, 2004). Storytelling is
the way we “create and discover” who we are (Kenyon, 2003, p. 30). As stories, our memories
influence the way we understand ourselves, how we interpret the present, and how we imagine
our future (Randall & McKim, 2004).
Another key understanding of narrative gerontology is that we do not tell our stories in
isolation. We create our stories in the context of those around us. In that sense, we are “coauthors” (Kenyon, 2003, p. 31). Co-authoring can be a positive experience when friends and
family members encourage us to think about our stories in a more generous and hopeful way.
However, it can also be a negative experience if others encourage us to find negative meanings

26
in our experiences. Therefore a social worker or therapist can sometimes become a co-author in
addition to family, friends, and other influences. A professional co-author can help an older
adult to see new meanings and perspectives as they re-tell their story. However, life stories are
highly personal and precious. Not everyone wants to engage in rewriting or reinterpreting that
story and many people engage in the process without needing assistance (Kenyon, 2003).
Putting it All Together: Where This Research Fits
One of the goals of this research was to make contributions to the current literature in
both narrative gerontology and dementia caregiving. This study explored how reminiscence
occurs naturally in older adults and recorded the insights of older adults regarding how
reminiscence influences their daily lives. Furthermore, reminiscence had not yet been studied
specifically with dementia caregivers. Therefore this study provides new information about the
way dementia caregivers cope as well as the role of reminiscence in that coping. Finally, the
location of this study was unique since the majority of related research has been done in large
urban centres. This project provides the unique perspectives of Northern BC caregivers.

27
Chapter Three: Methodology
Research Methodology
This research explored the ways in which older women’s stories relate to their roles as
caregivers using a qualitative approach. A qualitative exploratory approach was chosen to allow
for an in-depth exploration of the ways in which women use reminiscence to understand and
cope with their roles as caregivers. The purpose of qualitative exploratory research is to learn
about participants’ experiences and lay the groundwork for future research. Therefore, a small
sample size is typically used and participants are asked broad questions that leave room for the
researcher and the participants to explore areas that may not have been expected in the planning
stages. While these are important parts of any qualitative study, exploratory research emphasizes
the need to allow for new discoveries that may fall outside of the expected research direction.
Furthermore, taking an exploratory approach means acknowledging that the current study is
unlikely to establish concrete practice recommendations or solutions to problems. Rather, the
goal is to share participants’ experiences and open to door to further research (Patton, 2015).
Two additional research approaches were also selected to reflect the purposes of the
study and guide the research process: narrative gerontology and feminist theory. The primary
theoretical orientation of this study was that of narrative gerontology. The goal of narrative
gerontology is to examine how both our memories and our interpretations of them influence our
lives. The purpose of this study was more specific but similar: to explore how older women
caring for a spouse with dementia are influenced by a lifetime of memories. Therefore, the
design reflects a close examination of previous research and theoretical work in narrative
gerontology (Kenyon & Randall, 2001).
A feminist approach to research was also incorporated into the design. The project did

28
not attempt to address all aspects of feminist theory or research methodology, but rather
incorporated aspects of the feminist perspective into a multifaceted approach. Two aspects of
feminist research seemed particularly relevant to the design process. First, the feminist goal of
representing women’s personal stories as unique and meaningful was important in this research.
In addition, since the study explored the relationship between a woman and her partner, the
influence of patriarchy, domestic violence, and traditional gender roles were carefully examined
(Wickramasinghe, 2010).
Participant Recruitment
Participants were recruited from the Prince George, British Columbia (BC) area using
advertisements placed in locations where family caregivers were likely to receive support.
Posters were placed (with permission) at the Alzheimer Society, the Prince George Council of
Seniors, Gateway Lodge, and at the University Hospital of Northern British Columbia
(UNHBC). See Appendix C for a copy of this poster. A criterion sampling method was used to
select six participants who were women aged 65 or older and were caring for a spouse or partner
with dementia. A small sample was purposefully chosen in order to allow in-depth conversations
with each participant. Since this research was exploratory in nature, it was more important to
obtain in-depth information from each participant than to interview a large number of
participants (Patton, 2015). Detailed information about these participants’ experiences provides a
starting point for further research that may involve larger samples.
The study was open to caregivers of any sexual orientation or marital status so long as
they were in a long-standing relationship. For the purposes of this study, a longstanding
relationship was defined as one in which partners have lived together for more than two years.
This is congruent with current British Columbia law regarding common law relationships (Legal

29
Services Society, 2016). Since individuals with dementia are often unable to remain at home in
the latter stages of their disease, participants could be living together or separately from their
spouse at the time of their participation. Participants’ partners were required to be identified as
having dementia; however, the participant’s self-report of diagnosis was considered sufficient.
Verification via a physician was not required because the study focused on the caregivers’
perceptions and experiences.
Data Collection
The main method of data collection was semi-structured individual interviews using an
interview guide. A copy of the interview guide can be found in Appendix E. The researcher
engaged participants in individual semi-structured interviews of one to two hours in length. Each
interview took place at the participant’s home or another location that was comfortable for the
participant and agreed upon by both the researcher and participant. Interviews were audio
recorded and transcribed verbatim by the researcher. The researcher also prepared field notes.
Participants were asked to describe their role as caregivers, how they felt about caregiving,
whether they reflected on their current role in the context of their life story, and whether they felt
past experiences influenced how they coped with the physical and emotional tasks of caregiving.
There were several advantages to this type of data collection. Preparing an interview
guide in advance allowed the researcher to think critically about the questions to be asked and
how each question would help to answer the research question. The interview guide prepared for
this study also included notes about how to guide participants through the process and informed
them of the types of questions that would be asked next. While these advantages are also present
in a standardized interview, the flexibility of a semi-structured interview guide was also
important. It allowed the researcher to speak with participants in a more conversational manner,

30
which helped them to feel comfortable with the research process.
This is in keeping with the tradition of narrative gerontology, which seeks to understand
how seniors naturally reflect on their lives while attempting to help them feel more comfortable
in research and therapy settings. The comfort level of participants was particularly important
because participants were part of a vulnerable population. Older people are generally considered
to be a vulnerable group in the context of research. In this study, the power dynamic between
researcher and participant and the potential for emotional fragility (due to the stress of
caregiving) were of particular concern. Therefore maintaining the comfort level of participants
was extremely important both in the planning and data collection phases.
In addition, flexibility in data collection was key to the exploratory nature of the research.
It allowed the researcher to ask for additional information about responses that appeared to be
particularly important to the research question. This format also provided additional
opportunities for participants to discuss relevant information or experiences not explicitly
requested by the researcher (Patton, 2015).
In addition to the interview, participants were asked to complete a short demographic
form to obtain a more detailed profile of study participants and understand the differences and
similarities between them (see Appendix D for a copy of the form). The form asked participants
to give basic demographic information such as age, ethnicity, and gender as well as the number
of years spent caregiving and whether or not they lived with their spouse. This ensured that
comparisons could be made from a demographic perspective.
Data Analysis
Once the data was collected and interviews were transcribed, thematic analysis began.
Since the subject matter and type of data did not lend themselves to a particular type of analysis

31
or research tradition such as grounded theory or phenomenology, Braun and Clarke’s (2006)
approach to thematic analysis was chosen. It was flexible enough to address both the theoretical
underpinnings of the research and the varied types of interview data obtained in the study. The
method takes an inductive approach to analysis, which allows the researcher to analyze data
while avoiding preconceived ideas about the themes and ideas present in the data (Braun &
Clark, 2006; Patton, 2015). The central goal of Braun and Clarke’s approach is to identify
themes or patterns present in the data. Patterns are understood to be concepts relevant to the
research question that are repeated within an interview transcript or between multiple transcripts.
The term “theme” has the same meaning, but acknowledges that concepts do not necessarily
have to be repeated to speak meaningfully to the research question (2006). Braun and Clarke’s
methodology (like other forms of qualitative analysis) allows themes and patterns be drawn from
the data itself rather than the researcher. This aspect of thematic analysis is particularly important
because it reflects the study’s feminist lens by allowing the voices of participants to remain
central to the analysis process rather than the researcher’s perspective. It was particularly
important, given the exploratory nature of this study that every effort was made to prevent the
researcher’s expectations from distorting the results. Furthermore, because thematic analysis
addresses the explicit content of what participants say as well as the latent meaning implied by
their words, it was possible to access content on a deeper level than may have been possible with
other types of analysis (Patton. 2015).
Braun and Clarke clearly delineated the process for analysis which made their article an
ideal guide for thorough analysis. They identify 6 phases of analysis: “1) familiarizing yourself
with your data 2) generating initial codes, 3) searching for themes, 4) reviewing themes 5)
defining and naming themes, and 6) producing the report” (Braun & Clarke, 2006, p. 87). They

32
explain that while these phases should generally be carried out in sequence, they often overlap.
Therefore, researchers should move freely between phases as new discoveries are made.
The researcher followed this processes step by step to analyze each transcript individually
and then analyze the set of transcripts as a whole. Consequently, it was possible to identify
patterns and themes common to all participants and those that provided unique perspectives on
the research question. Care was taken to organize coded data according to the broader themes
they represented so that comparisons could be drawn between participants. The organized data
was then carefully reviewed to determine the commonalities and differences among the
participants as well as what conclusions could be drawn regarding the research question. Once
the analysis was complete, the researcher developed a written summary of the results. Each
theme was examined in detail using participant quotations to illustrate what was learned. This
summary can be found in Chapter Four. Finally, four specific answers to the research question is
discussed in Chapter Five.
Trustworthiness and Transferability
When conducting any type of research it is important to ensure that results are
trustworthy. This is particularly important in qualitative research because the focus is on
individual experiences and stories rather than numerical, testable, repeatable facts (Patton, 2015).
The first and most important strategy in this regard is study design. Both the methods of data
collection and the type of analysis should be carefully designed to minimize any distortion of the
results. In this type of research, it is most important to limit the influence of the researcher on the
results during data collection or analysis. In other words, the researcher should avoid influencing
participants’ responses by asking leading or closed questions.
As discussed above, the researcher is aware of her personal biases and took steps to limit

33
those biases while designing the study, preparing the interview guide, and interviewing
participants. During the analysis process, the researcher also took care to work methodically and
continually reassess whether the analysis accurately reflected participants’ stories. As
recommended by Braun and Clarke (2006), the analysis was carried out recursively. The
researcher repeatedly moved back and forth between the stages of analysis and made notes that
might apply to previous or future steps, which were incorporated later on. The researcher also
kept an analysis journal from the first interview through the writing of the report. This journal
was used to record insights, make connections between transcripts, develop themes, and explore
the relationship between the data and previous research. A particularly useful portion of this
journal was a running list of codes with descriptions of what each code included. The list helped
in making thoughtful changes to the meanings of codes and taking note of when a transcript
addressed a coded topic in a new way.
Once all six transcripts had been analyzed, the researcher returned to each transcript to
adjust the coding and ensure accuracy. The researcher also frequently referred back to the
original transcripts when working with collated data and writing the final report to check that the
participants’ comments were not misinterpreted out of context. This movement between phases
of analysis allowed the researcher to draw conclusions about the data set as a whole while
continually confirming that those conclusions matched what the individual participants had said.
The researcher also took care to examine other possible interpretations of the results. This
ensured that themes were not missed because they contradicted the expected results.
In addition, both theory and analyst triangulation were employed (Patton, 2015). As is
explained in more detail earlier in this thesis, the study utilized narrative gerontology, narrative
theory, and feminist theory in addition to consulting the research on dementia caregiving. Each

34
of these resources provided a distinct perspective on the experiences of women caregivers.
Taking each of the three theories in turn ensured that multiple explanations for themes were
considered. In addition, comparing research findings to the literature on dementia caregiving
helped to solidify the analysis.
Analyst triangulation was also addressed by conducting a parallel examination of one
transcript with the researcher’s faculty supervisor. Both the researcher and supervisor reviewed
the same transcript, with the supervisor providing her thoughts as another point of reference.
This allowed for feedback from a more experienced data analyst on one transcript as well as
providing an opportunity to potentially identify any skewing of analysis caused by researcher
bias (Patton, 2015). Finally, the researcher discussed the results with a woman who has had
similar caregiving experiences to the study participants, but who did not participate in an
interview. This helped to affirm that the summary of themes aligns with the experiences of this
population.
Since this study is exploratory in nature and had a particularly small sample size, a high
degree of transferability across practice situations was not expected. The participants shared
many characteristics since they all were women living in Prince George, were 65 years of age or
older, and were caring for a spouse with dementia. It is possible that their experiences were in
many ways particular to this geographical and social context. However, since the study was
exploratory and did not intend to establish practice guidelines or therapeutic methods,
transferability was not of high priority. Rather, it was hoped that the project would provide a
window into the unique coping skills of these women and encourage further research, including
research in other geographic areas. This research also sought to provide immediate information
for those practicing in Prince George. Given that the study explored natural coping methods

35
rather than a therapeutic method, it gives practitioners insight into the ways some of their clients
discuss their coping experiences without needing to be broadly transferable (Patton, 2015).
Ethical Considerations
While every effort was made to limit the risks to participants, there is always a level of risk
when researching sensitive topics like dementia caregiving. There were three distinct types of
risk involved in this study: psychological or emotional risk, social risk, and legal risk. The
researcher identified each of these risks and took steps to mitigate each of them.
Since the research question dealt with difficult subject matter, there was a risk that
participants would become uncomfortable, upset, or otherwise emotionally distressed either
during or after the interview. In order to limit the possibility of emotional or psychological
distress, the researcher informed participants that they need only answer questions they wished to
answer and that they could terminate the interview at any time. Participants were reminded of
this option if they appeared to be distressed during the interview. Furthermore, the researcher
engaged with participants in a sensitive way to avoid causing undue emotional distress. The
interview guide was carefully worded to reflect this intent. Finally, all participants were provided
with a list of mental health resources available to them should they feel the need to follow up
with a mental health professional.
The researcher understood that participants might choose to share information in the context
of interviews that they considered to be of a private and personal nature. Should this information
become public, it may negatively impact participant’s social and familial relationships.
Therefore, several precautions were taken to ensure participants’ personal information remained
private. First and foremost, participants’ information was stored privately and securely. All
computer files were stored on the researcher’s password protected H: drive at UNBC with a

36
separate password required to open research data. Hardcopy files were stored in a locked filing
cabinet in the researcher’s private home. Consent forms were stored separately in a locked filing
cabinet at UNBC in my faculty supervisor’s locked office. Participants were also asked to choose
a pseudonym, which was used in all research documents aside from the consent form. Finally, all
data will be destroyed a maximum of five years after the defense of this thesis. Computer files
will be deleted and paper files will be shredded. The five-year time frame is expected to provide
sufficient time for any publication and dissemination of the results.
The researcher also considered the potential that participants might disclose information,
which the researcher, as a registered social worker, would be legally required to disclose to the
appropriate authorities. For example, a participant may have disclosed that their spouse has been
a victim of elder abuse. While such a disclosure did not occur, information about these
limitations on confidentiality was explained to all participants both orally and in the information
letter (see Appendix A p. 52).

37
Chapter Four: Research Findings
In total six women participated in the study. In order to preserve the anonymity of
participants while still conveying the personal nature of their stories, each woman chose a
pseudonym to be used when reporting research findings. The chosen names in order of
participation were: Quilter, Wendy, Alida, Jane, Trena, and Jarnell.
Two participants also requested that their stories be combined with others in the final report
to maintain their anonymity. As the analysis process evolved, it became clear that none of the
participants’ stories could be told in sequence because they were unique enough to identify the
participants to readers. Therefore, the participants’ stories are not presented consecutively in this
chapter. Instead, the responses presented in this chapter are organized by theme.
Demographic Information
The six participants ranged in age from 66-83 years of age. They each identified as
caregivers for male partners who have dementia. The participants’ spouses ranged in age from
73-86 years of age. Five of the six participants (Wendy, Jane, Alida, Trena, and Jarnell) stated
that they now live separately from their spouse because he lived in a long-term care facility. One
participant (Quilter) lived together with her spouse in their family home. Of the five participants
who lived separately from their spouses, four lived alone and one lived with her daughter and
son-in-law. Jane’s situation was somewhat different as her husband lived at home until recently.
He entered a long-term care facility for respite care. While in the facility he was diagnosed with
terminal cancer. It was then decided that he would remain in the facility for palliative care.
All participants self-identified as married and used the terms “husband” and “wife” to
describe each other. Some participants later indicated that they were required to complete an
involuntary separation for financial reasons after their spouse entered a care facility. The length

38
of time that participants had been caring for their husbands varied widely. The participant who
had been caregiving for the longest time caregiving was Quilter at 20 years and the person who
had been caregiving the shortest time was Alida at 2 years.
There was also substantial variation in the level of education between participants. Each
participant described a different level of education (Grade 8, Grade 10 with Business College,
High School, an Accounting Diploma, and a Registered Nursing Degree respectively). Each of
the participants described their current employment status as “retired” although one participant
referenced volunteer work as a regular part of her life. All six participants described themselves
as Canadian and none expressed identification with a second ethnic group.
A more detailed breakdown of the demographic information collected can be found the
table below.
Table 1. Demographic Information
Age Spouse’s
Age
Quilter

83

86

Time
Live
Caregiving Together/
Separate
20 years
Together

Spouse
Lives

Education

Wendy

66

73

18 years

Separate

In
Facility

High
School

Alida

75

81

2 years

Separate

In
Facility

Jane

73

73

17 years

Separate

Trena

74

77

13 years

Separate

Jarnell

77

80

6.5 years

Separate

In
Facility
In
Facility
In
Facility

Grade 10
+ Business
College
Registered
Nurse
High
School
Grade 8

Participant
Lives With

At
Home

Accounting Spouse
Diploma
Daughter
and Son in
Law
Self
Self
Self
Self

Codes and Themes
As described in Chapter Three, interview transcripts were initially coded inductively.

39
Therefore, codes (categories) were developed based on what participants expressed as most
important. Then, those codes were used to label participants’ statements within interview
transcripts. That meant labeling participants’ comments into categories that reflected what they
felt was most important. Codes were also used to highlight places where different participants
shared similar experiences or discussed similar topics. The coded data were then organized under
three themes, which came organically from the data. These themes were: 1) Challenges and
Struggles of Caregiving, 2) Women’s Issues, and 3) Finding Help and Making Meaning. These
themes were further broken down into eight sub-themes to allow for more detailed analysis.
The themes and subthemes used in the analysis process are illustrated in Table 2 below.
Table 2. Themes
Themes

Subthemes

#1 – The Challenges and Struggles of
Caregiving

a) Role of Caregiver

#2 – Women’s Issues

a) Gender Roles

b) Challenges of Caregiving

b) Sexism
c) Domestic Violence
#3 – Finding Help and Making Meaning

a) Reminiscence
b) Help from Others
c) Other Coping Strategies

Developing codes directly from the data added to the trustworthiness of the analysis
process by ensuring that the researcher began with the participants’ stories rather than with
expectations based on previous research. Furthermore, the researcher avoided misinterpreting
participants’ statements by identifying codes and themes in relation to the importance

40
participants placed on each topic rather than by attempting to fit them into predetermined codes.
Since participants were asked first about their experiences generally and then about reminiscence
specifically, much of the data did not explicitly answer the research question. However, this
information was important to the participants and gave background about their lives. Therefore,
this data was coded and reported as well. Special attention was paid to the subtheme of
“reminiscence.” Data coded under reminiscence was closely examined in relation to the research
question. In addition, this theme was of particular importance when arriving at the four findings
presented in Chapter Five.
The Experience of Caregiving
In the first portion of each interview, participants were asked to describe how they
became a caregiver for their spouse, what their daily life was like as a caregiver, and how they
felt about caregiving. The purpose of these questions was to understand as clearly as possible the
caregiving experiences of each participant. Since the study focused on coping strategies used by
caregivers, it was important to gain an understanding of the specific challenges caregivers were
required to cope with. Furthermore, it was important to me as a researcher to give participants
the opportunity to tell their stories. This information was gathered under the theme “The
Challenges and Struggles of Caregiving.” This theme encompassed participants’ comments
about their roles as caregivers, what they found difficult about caregiving, and what was positive
or rewarding about caregiving.
The role of caregiver. At its most basic level caregiving is a collection of tasks; a daily
to do list that repeats ad infinitum often to the point of exhaustion. However, participants
described their experiences as far more complex. They identified the most difficult aspects of
caregiving to be the more complicated tasks. Higher-level tasks like advocacy, complex

41
decision-making, and understanding the disease process were challenging on an intellectual and
emotional level, whereas simpler tasks like assisting with dressing were perceived as less
difficult.
When asked how their role as a caregiver began, participants said that they first noticed
changes in their spouse and attempted to help in those areas. For example, Alida noticed that her
husband had trouble dressing. She said that “he needed a bit of help doing up his buttons, fixing
his tie. He’d go out to meetings and I’d have to fix him up like that.” Jane and Wendy both
talked about needing to be constantly aware of their husbands’ whereabouts since they tended to
wander. Wendy described this aspect of caregiving by saying:
I had to be constantly on alert… because he was a wanderer… he would wander
off. He did on a couple of occasions and I’d catch him, you know, before he got
too far away. So, I was constantly on call.
Jane also took steps to keep her husband safe; she said “I got him a uh cellphone and I got GPS
so that I could track him,” but that it was still “so scary!” Quilter’s husband had significant
physical disabilities, so she talked about assisting with at-home physiotherapy and helping to
position her spouse in his wheelchair.
Participants whose husbands had moved into a care facility described a change in their
caregiving responsibilities at that time. Quilter, Jane, Trena, and Jarnell talked about the stress of
taking over the family finances just as the expense of long-term care was added. Jarnell, in
particular, stated that her husband had not allowed her to be involved in their finances until he
moved into care. She discovered that she was not able to pay for her living expenses in addition
to the care facility fees and had to “get out and find out where I could get help so I could
survive.”

42
Caregivers also needed to decide how frequently they would visit their spouse in the care
facility. Alida, Wendy, Trena, and Jarnell all described regular visits to their spouses in longterm care. Alida and Jarnell both explained that they began by visiting daily and then realized
that they needed to take breaks from visiting in order to stay healthy. For both, this realization
came when they became ill and were unable to visit for an extended period of time. Alida said,
“I’ve been going every day except when I was sick and now I’m taking Thursdays off pretty
much…. You need a day off.” Although these participants acknowledged that they needed to
take breaks, they still felt a sense of responsibility to spend as much time with their husbands as
possible. Jane explained that she spent a great deal of time with her husband at the time of the
interview because she knew they have very little time left together. She felt strongly that he
should spend most of his time with someone familiar, so she took most of her breaks when she
knew that a family member or close friend could spend time with him. However, her children
were only able to visit on the weekend. She said that “just having 2 days in a row isn’t what you
need,” and that having regular breaks throughout the week would be more helpful. Trena
described visiting as difficult because she experienced abuse from her husband before he was
diagnosed with dementia. She explained that she felt obligated to visit, but structured her visits to
ensure they were as easy as possible emotionally. She visited twice a week at a time when she
knew there would be an activity going on and there would be opportunities to talk with other
families around. When she visited she stayed no longer than 30 minutes because she found it too
difficult to spend any more time there.
Deciding when to visit a spouse was just one of many decisions participants described.
Other decisions included moving to an accessible home or renovating, deciding on the best type
of medical treatment or medication, financial decisions, determining when their partner should

43
stop driving, deciding whether and when their spouse should move into a care facility, and
deciding whether or not to leave an abusive partner while they were suffering from dementia.
Among these decisions, the one choice that was common to all participants was whether
their spouse should move into long-term care. This decision-making process was a significant
moment for each participant. Participants described that moment in their lives in great detail
explaining the conversations they had with health care providers and the emotions they felt
surrounding the decision.
Quilter recalled feeling strongly that her husband should never move to a care facility and
was the only participant whose spouse still lived at home at the time of the interview. She
remembered working in a facility when she was a teenager and decided that no one in her family
would ever live in a similar setting. She said, “I couldn’t- I couldn’t bear the way they treated the
patients. I mean they left them in their… poo. They left them in their pee. They treated them as
inanimate objects. It was just terrible!” Jane also explained that she did not want her husband to
live in a care facility and renovated their home to make it accessible no matter his level of
physical disability. However, she recognized that she was unable to provide all of the care he
needed, so her husband entered a residential care facility first for respite care and then for
palliative care. She acknowledged that this was the best choice for both of them because he
needed more medical care and wandering episodes were “repeating night after night” and she
“really needed to get some sleep.” However, she was extremely disappointed that he needed to
move even though she “did all those things so that- to keep him here”.
Both Alida and Wendy described the decision for their spouse to enter care as difficult
but ultimately necessary as their spouses’ care needs increased. In contrast, both Trena and
Jarnell expressed relief when their husbands entered long-term care. They each described

44
domestic abuse that began before their spouses were diagnosed with dementia and became
increasingly difficult to cope with as dementia progressed. Jarnell, in particular, said that she
became “even more afraid of him” as he became more confused and aggressive. This continued
until his health care team decided he should move to a care facility. This decision was made to
prevent him from hurting her or himself.
Quilter, Alida, and Jane all became advocates for their spouses both before and after they
entered care. That meant advocating for medical or residential care in the best setting, ensuring
appropriate medications were given, and teaching others about the way dementia affected their
spouse. While acting as an advocate was a meaningful way to support their spouses, it was also
time-consuming. For instance, Jane identified advocacy as an important part of her role, but also
expressed exhaustion as well saying that “sometimes I think I’m never… that I’m always
teaching…” and that there was a never-ending list of people to teach in each new setting.
While all six participants felt the role of caregiver was extremely challenging, several
participants found there were positive aspects of being a caregiver as well. Some felt it was
important to acknowledge that their spouse had helped them in difficult times. They felt that they
were now returning the support they had received. Another theme was the “pride and selfconfidence” found in being a successful caregiver and not quitting. Others focused on the
positive moments they still enjoyed with their husbands while providing care.
The challenges and struggles of caregiving. In addition to the many tasks involved in
caregiving, participants also described several ways that caregiving presented an emotional
challenge. As expected, the first set of challenges came with the onset of dementia in the
participant’s spouse. It began with grieving changes in their spouse and coping with the worry
and shock brought on by those changes. The second set of challenges developed later on as the

45
partner’s dementia progressed. Caregivers explained that, as their spouses became more
confused and required additional care, they became lonelier and also felt a greater desire to
become independent from their role as caregivers. The final emotional hurdle came when
participants began thinking about what their lives would be like after their husbands passed
away.
Each of the participants had difficulty watching the changes in their spouse caused by
dementia. Jane, Wendy, Alida, and Quilter each described the pain of watching their spouse
change dramatically from the person they once were. They carefully explained that their
husbands were once intelligent and capable. They described their spouses as “well educated,”
“sharp,” “vibrant,” “ active,” “handy,” and “independent.” Watching their spouses lose their
independence and abilities was painful. Quilter and Wendy said that the suddenness of these
changes made them even more difficult to handle. Jane said that her husband’s disease
progressed slowly at first and then his health deteriorated suddenly. She described the change
saying “we sort of went along like this for so long and then… he’s hit bottom.” This suddenness
(regardless of when it was experienced) only added to the emotional impact of the disease
progression.
Most of the participants indicated that they consistently worried about the changes in
their husbands. The predominant worry was safety, particularly if their spouse was medically
fragile or prone to wandering. Another worry was the development of what participants
described as “aggression” related to dementia (also known as the Behavioural and Psychological
Symptoms of Dementia or BPSD). Other worries included the possibility of their spouse getting
into trouble at work due to their memory loss, and mistakes being made by facility staff. Time
spent worrying added to the emotional weight of caregiving.

46
The next struggle identified was much less concrete. Participants described a tension
between loneliness because of the loss of a relationship with their spouse and a need to become
more independent from their role as caregiver. For example, Quilter said that caring for her
husband was a “lonely existence” and said, “I’ve never been alone, and I don’t how I would
react without him.” She also explained that caregiving was a “really hard adjustment” because “I
had a really active social life, so I’ve had to give up a lot of that.” In addition to this internal
tension, participants also found that friendships became challenging. Jane said that when she told
her friends about her husband’s dementia, many of them seemed to disappear from their lives.
She explained that being a 24/7 caregiver meant that she did not have the energy she needed to
make those connections herself. She said:
…it’s too much like entertaining. I just didn’t have the energy to do it! You know? So, it
isn’t all other people disappearing, it’s something I could…. I was aware of that – I
couldn’t- there was a few people who would wander in and sit in the yard with him and
that would be great.
These spontaneous visits were their only connection to their old friends because she was not able
to initiate more formal visits.
For Trena and Jarnell the transition was somewhat different. They explained that they
were afraid of their husbands when they lived at home, so the transition to facility care came as a
relief. However, they were now faced with decisions about their daily lives that they had not
previously been allowed to make. They were now able to choose whether to spend time with
their spouse, how to handle finances, and how to spend their social time. Both described an
apprehensiveness about making decisions that their husbands would have disapproved of along
with a sense of pride in their newfound independence.

47
The final emotional struggle the participants described was considering what their future
might look like after their spouses passed away. Only two of the participants discussed this
aspect of their experience: Alida, and Jane. Alida wondered how she might fill her time when she
no longer visited her spouse at the long-term care facility. She wondered aloud “I don’t know,
like I said, what I’ll do after. I might- I might go to a seniors uh seniors centre I’m not sure….”
She said that she would need to “make a new life for [her]self” after her husband passed away.
Jane’s perspective was somewhat different because she was aware that her husband would most
likely pass away within the next month. She indicated that she is “just trying to live in the
moment” and making the end of her husband’s life “as good as we can.” She envisioned leaving
their home and garden similar to the way it was when her husband lived at home because she has
so many memories of the way he enjoyed their home.
Womanhood, Caregiving and Domestic Violence
This section explores participants’ thoughts about caregiving as women. Participants’
statements on this topic were collated under the theme “Women’s Issues.” This theme captured
all statements by participants that discussed the impact of sexism, feminism or gender roles and
expectations. In general, participants felt that being a woman made the experience of caregiving
different and, in some ways, more difficult than that of other caregivers.
The uniqueness of caregiving as a woman. Participants reported that caregiving for a
spouse with dementia was quite different from caregiving for a parent or friend. Wendy
particularly noticed the difference between her caregiving experience and that of the children
caring for their parents in her support group. She remembered explaining to them that her
situation is quite different because “you go home to your husband and your children and your
life. When I go home, I go home to nothing. That’s my life and it’s gone. So, it’s like being a

48
widow with a body.” Other participants indicated that the most difficult changes have been
changes in their relationship as a couple. For example some participants said that they missed
sleeping in the same bed with their spouse and being able to make difficult decisions as a couple.
Participants also described being treated differently in the context of caregiving because
they were women. For example, Jane was denied a credit card in her own name when her
husband was no longer able to use his card independently. She explained that even though her
pension was exactly the same as her husband’s she still did not qualify. She said that they,
evened out our CPP so we’d both get the same size of a cheque. So he wasn’t kind
of primary, but they would not give me a credit card in my own name… just, just
makes you think of women things you know? Anyway… but I still have a credit
card. They never make any money on me. I don’t pay them any interest.
(laughing)”
Caregiving and domestic violence. As mentioned previously, two participants in this
study disclosed that their partners had abused them both before and after they were diagnosed
with dementia. Trena and Jarnell both indicated that there had been long-term abuse in their
relationship, which had not ended until their husbands were admitted to long-term care. They
each explained at length the impact that domestic violence has had on their caregiving
experiences and on their ability to cope with their husbands’ diagnoses of dementia. I have
purposefully chosen to summarize their comments on this issue without drawing clear
distinctions between their stories. I have done so in order to prevent either participant from being
identified by the particular details of their life story. However, I have provided a few descriptive
quotations from each of their interviews which do not contain identifying information and yet
provided valuable insight into their experiences.

49
Trena and Jarnell had difficulty identifying when they first became caregivers. They
indicated that their spouses were extremely resistant to receiving care and therefore, caregiving
meant careful planning to ensure safety and prevent violence. One strategy involved finding the
spouse with dementia things to do outside of the home in order to create a safe space for a short
time. Jarnell said “I’d even get him little things to do so he’d go away from the house so I could
live.” Another strategy was to involve a social worker in transporting the participant’s spouse to
an adult day program when he was unwilling to drive with his spouse. Both women explained
that at times it was possible to complete tasks that their partner was no longer able to do by
waiting until he was away from the house and then completing those tasks in secret. However,
direct caregiving was not usually accepted. Trena said, her husband had an attitude of “nobody’s
gonna tell him what to do. Um… and so he never would take instructions or care.” In most cases,
it was nearly impossible to provide the level of care their partners needed because most offers of
help were refused.
Another concern for these participants was feeling trapped in a relationship or way of
interacting with their spouse that was not what they would have chosen if their spouse had been
healthy. For example, both participants felt uncomfortable with visits to the care facility where
others would not understand the history of their relationship with their spouse. One participant
mentioned that she felt required to provide a certain amount of care and felt an obligation to visit
even though she did not feel a positive emotional connection to her husband. She described her
current role as “going to see him and doing what is my necessary part of- of the care um as
required by the facility… that’s my responsibility.” The diagnoses of dementia also influenced
participants’ decision-making surrounding whether to continue living with their abusive partner.
One participant said that she had left her husband for a short time and rented her own apartment,

50
but felt obligated to return home when he became more confused “because of the things that he
got into.” She felt she “had to go back home… and sell our trailer cause he couldn’t be
responsible for that kind of thing She explained that she then moved back in with her husband in
order to care for him and manage their joint finances.
The transition to residential care was quite different for the participants who had
experienced abuse. Both stated that their predominant emotion when their spouse moved into
long-term care was relief. One said, “well, there was so much to learn, but I was free! (crying)
Free of this man that I was so scared of….” Both participants also described feeling guilty about
not being able to care for her husband at home longer than they had. One said she felt guilty
about being able to “walk away” when she first left her husband at the facility.
Decisions about moving to residential care were also experienced differently for Jarnell
and Trena. The decisions were largely made by health care providers. In one case the
participant’s spouse was admitted to hospital involuntarily under the Mental Health Act. She
explained that “he came home here and the police came and picked him up from here. I was not
here when they picked him up. They called me and I came home after he had been taken away.
The participant’s spouse was later admitted to long-term care because the police felt that she
would not be safe if her husband returned home. She described conversations with police,
hospital staff, and her family doctor. She explained what her husband’s behaviours had been like
at home and her fears about his future behaviour. She stated that the decision to admit her spouse
to hospital was made by the police who had kept her safe until he could be transported there.
Later she had a conversation with her doctor about her husband’s abusive behaviour at home.
The doctor advised that the only way to keep them both safe was for the participant’s spouse to
move directly from hospital into long-term care.

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Another area in which Trena and Jarnell’s experience differed from the other participants
was in the way they understood and accepted their roles as caregivers. Other participants saw
caregiving as a way to give back to a spouse who had supported them over the years. However,
this narrative didn’t fit for Jarnell and Trena. Trena explained that an “emotional connection
was… basically for the most part non-existent before he went in [to the care facility].” Both
stated that their husbands had engaged in abusive behaviour that made life difficult and fearfilled for many years. A diagnosis could not be viewed as another challenge to be faced as a
couple. Instead, dementia became an additional catalyst for erratic and abusive behaviour. One
participant stated that her husband became “more aggressive and that [she] was even more afraid
of him and the children were afraid of him too.” The fear and emotional disconnection meant
that Jarnell and Trena needed to find other ways to understand and cope with their
circumstances.
Finding Help and Making Meaning
The main purpose of this study was to better understand how caregivers used
reminiscence to cope with the challenges of caregiving. That meant asking each of the
participants about how they coped with the experience of caregiving. In order to gain a broad
understanding of how reminiscence might be used with other coping strategies, I began by
asking participants about their coping methods in general before asking directly about their use
of reminiscence. Participants identified many methods of coping that were helpful to each of
them. The coping strategies described fall into three main categories: reminiscence, help from
others, and general strategies. Data on each of these topics was collected under the theme of
“Finding Help and Making Meaning.”

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Reminiscence: remembering and reflecting. While all participants stated that they
engaged in reminiscence to some degree, there appeared to be a qualitative difference between
kinds of reminiscence. Sometimes participants reminisced simply for the purpose of looking
back on positive memories. They explained that reminiscence helped them to remember that
even though things are difficult now, they had good times with their spouse in the past. For the
purpose of this thesis, I have named this “simple reminiscence.” Some participants also
described a second type of reminiscence, which I have called “integrative reminiscence.” In
these moments participants described thinking back over their lives as a whole in an effort to
make sense of it. The goal of this type of reminiscence was either to find a possible reason why
events had occurred (meaning-making) or to assess their personal growth (identity development).
While all participants engaged in both types of reminiscence to some degree, each participant
tended toward one type of reminiscence more than the other.
Jane, Alida, and Quilter’s descriptions of reminiscence focused on remembering for the
purpose of enjoyment. When asked when she thought about positive memories, Quilter said, “I
just pull them up because they’re nice memories.” Jane described thinking of her memories most
often when she was with her spouse and wanted to think of happy things to talk about that he
might still remember. She said that “sometimes I call on them [memories] and sometimes they
just pop up.” Alida stated that she expected to spend more time reminiscing “when he passes,
you know, you’ll think about them more. Cause right now, he’s beside me most days.” All three
of these women felt that they had primarily positive memories with their partners and did not feel
a strong pull to think deeply about their memories.
Wendy also told the story of a happy marriage and many happy memories that she
enjoyed looking back on. She explained that she looks back on the good times “when things are

53
going wrong” and thinks, “oh no, you know, it was- it was good.” She said that thinking about
those memories gave her comfort when things were difficult. She said that it gave her “comfort
to go and spend time with him or thing about… the good times.” However, she also talked about
looking back on a difficult childhood in which her alcoholic parents did not provide adequate
support. She left home at age 15. She reflected back on that time in her life as difficult but also
drew connections between the skills she learned as a child and her ability to cope with her
current situation. Wendy credited the resiliency and determination she learned as a child with
successfully caring for her partner through 18 years of undiagnosed dementia. The reminiscence
processes she described reflects both simple and integrative reminiscence.
As discussed earlier in this chapter, Jarnell and Trena both told stories of difficult abusive
marriages in which they had little agency. Their experiences of reminiscence are also quite
similar to each other. They both recalled few positive memories of their relationships with their
partners.
Trena explained that one of her most positive memories with her husband involved a trip
they made across the country. Her memories of that trip were conflicted. She said that she often
thought back on that trip in an effort to understand what happened. She explained:
I’ll often think of the things that we did and did not do… on that trip… And I look back
and go (sigh) I should have maybe put my foot down and say, no, this is what I would
like to do. But I never did because I knew if I said what I wanted to do, it wasn’t going to
happen anyway.
She also wondered whether her husband actually enjoyed the trip himself. She explained that
they made all the decisions about that trip based on his desires and even made special stops to
visit his friends. However, she noticed that he never discussed the trip afterward or commented

54
on whether it was enjoyable.
Trena talked about reminiscence as something she does purposefully in an effort to make
sense of her experiences. She said that she had recently reconnected with her sister and that they
have spent time talking about their childhood experiences. She explained that these
conversations largely revolved around exploring how their past experiences are “influencing…
probably our life as we know it now.” She said that she could now look back on her life more
“objectively” and understand the reasons why certain things happened. She expressed the belief
that “if a person understands… the whys and wherefores of what has happened, it… gives you an
understanding… and you begin to feel good about your own personal growth.” For Trena, this
type of reminiscence was positive and helped her to gain a sense of accomplishment and self
confidence.
Jarnell talked at length about one particular memory: working at the Bay. She identified
this particular memory as one she has looked back on frequently over the years. She said that
when she felt low because of the abusive behaviour of her husband she would remember that job.
She said,
I always looked back to the Bay. I knew I was a good person and that… and I knew I
could do something. So, thank God that- that I did have that job that always told me
you… are not a nothing. You are somebody and you can do something (crying). Yeah…
that was my proof.
She also said that she has talked about her experiences with her siblings. She told me that they
said they are amazed at how she has been able to cope with difficult experiences over the years.
She said that they are proud of the way she has been able to learn to manage her finances and
other aspects of her life that her husband controlled when he lived at home.

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Jarnell repeatedly described reminiscence as a way to “prove” to herself that she is a
capable person who has been able to cope with many challenges in life. However, she also
acknowledged that there are many memories that she had difficulty understanding. For example,
when she looked back at the way her husband abused her, she described conflicted emotions. She
said that she did not “blame it totally on him,” but blamed “a lot of it on the way he was brought
up as a child.” She also mentioned the way her husband always bought “the best” things for her
and the children, which did not make sense alongside his abusive behaviour.
While both Trena and Jarnell were able to spend time reminiscing with their siblings,
other participants had trouble finding similar opportunities. Wendy told me that she does not
have “people to reminisce with” because her daughter found it too difficult to talk about
memories of her father. Wendy moved to Prince George when her husband moved into a longterm care facility there and her new friends did not know her husband when he was well. She
explained that she would like to have someone who remembers her husband to reminisce with,
said that instead “I keep my memories to myself.” Jane said that she enjoyed reminiscing with
others, but that many of their old friends have passed away or live far away now. She did most of
her reminiscing with her spouse or children.
When asked about memories that help them to cope with caregiving, Quilter and Alida
both spoke to positive memories of their partners over the years. Quilter talked about trips she
took with her husband and the way he parented their children. Alida spoke of memorable
anniversary celebrations and their move to Prince George to from Montreal during the 1980
Québec Referendum. While Jane described similarly positive memories throughout our
conversation, she identified her nurse’s training as the memory that helps her to feel confident as
a caregiver. She described finishing nursing school “after my kids were all in school” because at

56
that time you were “not allowed to be married while you’re a nursing student. So, she was
forced to leave nursing school when she married her husband and start again later in life. This
accomplishment was a significant memory for her.
For Wendy and Jarnell the memories that helped them to feel able to cope with
caregiving were memories of caregiving itself. Each of them felt a sense of pride and
accomplishment at successfully caring for their spouse at home until they entered residential
care. Wendy was proud that she “hung in there” even when caregiving was extremely difficult.
She said “I actually think that being a caregiver for the length of time I did on my own gave me a
lot of um… pride and self-confidence.” Jarnell talked about “being strong enough” to take care
of her husband even when it was difficult and expressed a sense of pride in having “survived.”
Conversely, Trena talked about making similarly “tough decisions” in her past, but did not share
the details of these decisions. She felt that the difficult experiences in her past developed a sense
of personal strength, but that she was still learning about how those memories influenced her
over the years.
Help from others. Asking for help from others was one coping strategy common to all
participants. All six participants requested help from others at some stage in their caregiving
journey. In some instances that meant asking for emotional support and other times it meant
asking for practical help or professional care. Participants talked about asking for help from
family, friends and professional caregivers. These requests were met with many types of help. At
times, participants received exactly the help that they needed. On other occasions, they were
unable to find the right support and had to make do with what was available.
The first line of support for most participants was family. All six participants received
some degree of support from their family members. Quilter’s daughter and sister stayed with her

57
at difficult transition points. For example her daughter came to visit when her husband was first
diagnosed and helped to remember information given by medical staff. She said that she was “so
glad” that her daughter was with her “because I don’t know what I would have done without
here. She remembered things that I didn’t even.” Later, her sister stayed for two months when
Quilter’s spouse came home from the hospital after a severe stroke. She is a retired nurse, so she
assisted with practical aspects of caregiving and helped Quilter to decide on the amount of home
support services she needed.
Jane’s children helped with emotional support. For example, Jane described calling her
son after receiving a difficult phone call from her spouse’s care facility. She also told me that her
son and daughter in law spent time with her husband so that she could take breaks. Similarly,
Alida said that she speaks with her son every night to let him know she’s okay and regularly
visits with family who live nearby. Wendy’s children live farther away and had a difficult time
understanding their father’s illness at first. Later on, she received emotional support from her
son. She explained that most often she talks about her partner with her son because “my daughter
doesn’t like to talk about it. She was very close to her dad.”
Jarnell and Trena both described receiving emotional support from their siblings, which
was described at greater length earlier in this chapter. Trena does not have children, so that is not
an avenue of support for her. However, Jarnell talked about having supportive relationships with
some of her children and particularly enjoyed spending time with her grandson. She recalled one
particular exchange where she said to him “...do you know that Grandma don’t have any friends?
He said yes, you do! And he jumped up on [her] lap and he hugged [her], he said you have me!”
Jarnell’s anecdote alludes to the way in which participants found support from friends
particularly difficult to access. Jane’s struggle to maintain friendships was discussed earlier in

58
this chapter. She also said that her closest friends now are also wives whose spouses have
dementia. She explained that they have set up an informal support group, “I call us the
Alzheimer’s wives. We meet every two weeks and just get together in somebody’s home and talk
and support each other and call each other and we go out with our guys.” Jane found it helpful to
spend time with a group of friends who had similar stories to hers and knew her husband as well.
Quilter and Jarnell also mentioned that their friends contacted them to provide support. However,
Wendy, Alida and Trena did not mention friendships as a source of support in their caregiving
roles.
For all participants, the majority of the practical support they received was provided by
professional caregivers in some capacity. Alida, Jane, Wendy, Jarnell, and Trena’s partners were
all living in long-term care facilities at the time of their interviews. Therefore, the care facility
provided medical care, medication management, meals, assistance with activities of daily living,
and recreation opportunities (Northern Health, 2016b). Quilter’s husband lived with her at home.
He received home support help with hygiene, dressing, and bathing three times each day. His
doctor met with Quilter in the office or makes home visits. Their evening meals were also
provided by a delivery service.
All six participants were grateful for the support they received from professional
caregivers. Those whose spouses lived in residential care all felt that their spouses were living in
a good place. Alida said, “If he has to go to a place, I think he’s in a good place” and Wendy said
that once her husband was transferred to a facility that he currently lives in, “my attitude
changed, because his care was excellent there.” However, each had different experiences with
professional caregivers. Some were happy with the care their spouses received, but others felt
that professional care could be better organized, and some had recommendations for how

59
professional care could better meet the needs of patients and caregivers.
Quilter and Wendy were the only two participants who discussed accessing home support
services. Quilter was happy with the home support services her husband received through a
private company. She explained that her husband initially received publicly funded home support
through Northern Health because the first weeks after he was discharged from the hospital were
free. She was surprised that, due to her level of income, continuing with funded home support
would have cost more than switching to a private service. However, she had also become
frustrated with the health authority’s home support program because they sent different care
aides each day. She felt the change in care providers had a negative effect on her husband and
said that she noticed a positive change in him when she switched care providers. Wendy had a
much different experience. Until recently, she lived in a rural community less than 100
kilometers from Prince George. She said that because she lived outside of the city, there was
…no help available for caregivers. There’s limited help if you live in the city, but
if you live outside the city, you don’t have any help. You’re on your own and
it’s… it’s a tough- it’s a tough go. And there was no help available to me.
Nothing. So, it was me 24/7 and it does take its’ toll.
When talking about their role as caregivers, participants described the period when their
spouses moved into residential care as a key memory. For example, Alida talked about meeting
with staff at the hospital and then being interviewed by a psychiatrist. When the assessment was
finished she was told that her husband had Lewy Body dementia (a diagnosis she had never
heard of). She was told that he would not be able to return home because she would no longer be
able to care for him. Although Quilter’s husband did not move to residential care, she recalled
discussions with her spouse’s health care team in which they informed her that he should move

60
into a care facility. Her description of this memory is similar to that of the other five participants.
One of the main struggles participants had with professional care providers was a lack of
information. Jane, Alida, Quilter, and Wendy each said that understanding their partner’s
diagnosis, prognosis, and the health care options available was essential to their ability to cope.
However, this information was not always readily available. Participants described the initial
diagnosis as a time when their spouses’ new behaviours started to make sense. In particular,
Wendy said that she suspected that something was wrong, but could not understand why her
husband had suddenly become so difficult. She said that she often became angry or frustrated
with him, but that her reactions changed when he was finally diagnosed with dementia. She
described the years before his diagnosis by saying that “it was just constant turmoil, it was
constant chaos – constant chaos!” However, even when a diagnosis was made, sufficient
information about the diagnosis was not always given. Jane said that she spent a lot of time
researching to find the information she needed to understand her husband’s disease and how to
take care of him. Wendy was told that her husband had dementia, but she “didn’t really
understand what dementia was and thought it was just memory loss.” The other symptoms of
dementia were a surprise. Quilter said that she still did not know how her husband’s dementia
was expected to progress and did not know who to ask.
Wendy also described conversations with hospital staff when her husband transitioned to
long-term care. In one such conversation, a social worker told her that she needed to apply for
involuntary separation from her husband when he moved, but did not explain what that meant.
Wendy said that she was distressed by the idea of legally separating from her husband who she
loved very much. With no other information, she refused to do it. She said that this was just one
example of they way staff interacted with her during the move. She explained,

61
…when you get thrown into the situation of having to put your spouse into care… there’s
a lack of information. Uh… people push you. The caregivers are just pushed aside and
um… they’re just, um basically the caregivers are ignored.
Other participants also felt that they needed to advocate strongly for their spouses’ unique needs.
They felt it was important to ensure that decisions about facility placement were made in a way
that reflected their husbands’ needs rather than those of the health authority or facility.
In contrast, Trena, Jarnell, and Quilter each described specific moments when health care
staff went above and beyond to provide excellent care. Trena said that a social worker “took [her
husband] to the day centre every day… nobody was gonna tell him what to do or where to go.
She was extremely helpful… [and] went way beyond the call of duty” because she was aware of
the abuse in their relationship. Jarnell said that one social worker in particular spent a great deal
of time talking to her and she was grateful to finally feel heard. She also said that her doctor took
the time to listen to her concerns about physical abuse from her husband and advised her to leave
for her own safety. Quilter and Jarnell also expressed thankfulness for family doctors who went
above and beyond to ensure their husbands were well cared for.
Based on their experiences, participants suggested several ways that professional
caregivers could improve their interactions with caregivers. They recommended that
professionals show greater respect for caregivers’ knowledge and provide appropriate
information about the disease process and care options. One participant suggested providing a
resource sheet with contact information for community agencies as well as asking about financial
security where appropriate. Yet another recommendation was to incorporate more volunteers in
order to provide a high degree of care for those living in residential facilities.

62
General strategies. In addition to the strategies described above, caregivers used a
variety of coping strategies depending on their personal needs. The strategies participants
mentioned included prayer, attending support groups, knitting, researching dementia and
dementia care methods, and finding humour in their daily lives.
One strategy common to all participants was somewhat more ambiguous. Each
participant used words or phrases that explained (to a certain degree) their beliefs about their
situation and their determination to cope with the difficult aspects of caregiving. For example,
several participants thought of caregiving as a way of giving back to a spouse who had helped
them in other aspects of their lives. This sentiment is expressed clearly in Alida’s statement: “He
supported me…. So I definitely can support him.” This and similar phrases seemed to be helpful
to participants in their process of accepting and coping with being a caregiver. A list of similar
phrases used by participants can be found in Table 3 on the following page.

63
Table 3. Explanatory Phrases
Explanatory Phrases
I had to

Over time it gets easier

It was just a part of life

I was just determined

You take the good with the bad

You don't give up

I’ve had to make a big adjustment

I hold onto the memories

I’d rather have him than not have him
Just took some adjustment

You have to accept the facts… that takes
time
It’s life changing

Very difficult to get used to

Life goes in stages

I don’t let it bother me because I understand it

You try to be as strong as you can

You just have to accept it

You’ve got to be thankful for what you’ve
already done
It’s like a journey

It’s just a fact of life
You just keep going
It all became very normal to me

He supported me… so I definitely can
support him
An extension of all the other caregiving

Once I got a diagnosis, it was just a matter of well,
it’s gotta be done
Nobody else is gonna step up to the plate

It will take time

Least I could do was give a little back

Well, getting married is an endurance
contest
Just trying to live in the moment

I’m not going to abandon this man. He wouldn’t
abandon me!
We were gonna make it!
Just something I had to do

I love being a caregiver

This is what I needed to do for me now
You know what? I need to have a life too.

Participants described using a wide variety of coping skills throughout their nearly 77
years of combined caregiving experience. While each caregiver employed a unique set of coping
strategies, all six spent time reminiscing and requested help from professional caregivers, family
or friends, among other strategies. They also described several ways in which caregivers like
themselves may be better supported in the future. The next chapter will explore how this might
be done and what further research may be needed.

64
Chapter Five: Discussion and Conclusions
While caregiving has the potential to affect caregivers negatively, coping ability can act
as a mitigating factor (Montgomery & Koslosk, 2009). As discussed in Chapter Two, there is
evidence that both narrative therapies and the act of reminiscence in and of itself have
therapeutic value for older adults. Therefore, as a coping strategy, reminiscence has the potential
to be protective for caregivers. The stated purpose of this study was to answer the question “How
do older women’s life stories influence their experiences and perceptions of caring for a spouse
with dementia?” The goal was to better understand how older women use reminiscence in their
day-to-day lives to cope with the challenges of caregiving. Each of the participants indicated that
they engaged in reminiscence regularly. Their experiences with reminiscence were outlined in
Chapter Four. Analysis of data (and the theme of “Finding Hope and Making Meaning” in
particular) led to a more detailed understanding of the role reminiscence played in the
participants’ lives. In addition, several findings were uncovered that add to the current literature
on reminiscence and narrative gerontology.
Contribution to the Research
As described in the previous chapter, participants were asked about their caregiving
experiences more generally before being asked about their experiences with reminiscence in
particular. Their descriptions closely mirrored previous research regarding caregiver experiences
and emotions. As a whole, participants found caregiving to be an extremely difficult task, but
one that came with some rewards. They described a wide range of coping strategies that were
used at various times in light of their individual coping styles and the challenges they faced while
caregiving. However, all six participants reported engaging in reminiscence in some form on a
regular basis.

65
Participant’s experiences with reminiscence were coded under the sub-theme of
“reminiscence”. This theme, in particular, was analyzed in detail in an attempt to answer the
stated research question. The analysis, presented in the preceding chapter, suggests four specific
findings (or answers to the research question): 1) caregivers find comfort in simply remembering
the good times; 2) they sometimes actively use reminiscence as a tool for making sense of their
circumstances; 3) women who have experienced abuse or other extremely traumatic
circumstances may use reminiscence to “make sense of things” more often; and 4) women may
use reminiscence as a way of establishing or solidifying their identities. All four findings were
carefully compared with the literature.
Finding comfort in good memories. Each of the six participants described reminiscing
about positive experiences. They talked about looking back on the good times in their lives as a
pleasurable experience. Some participants said that at times they would find themselves thinking
about certain memories almost without trying. There did not appear to be a particular purpose to
this type of reminiscence that the participants were aware of; however, they described it as
enjoyable. In the previous chapter, this was called this activity “simple reminiscence” (to
differentiate it) because the description given by participants did not seem to match formally
defined types of reminiscence and participants seemed to experience it almost effortlessly.
For example, Quilter talked about memories coming to her when she is lying in bed at
night, which was a time that she previously spent talking with her husband. She explained that it
simply felt good to think about those memories. Somewhat differently, Wendy said that she
sometimes deliberately remembered the good times because she wanted to remember better
periods in her marriage before her husband was ill. Similarly, Alida thought of this kind of
reminiscence as a way to remember her husband as he used to be. Participants did not feel the

66
need to have a reason or a goal for this kind of remembering other than that it felt good to think
back on times they remember positively.
Wong and Watts (1991) and Webster (1994) both set out criteria for categorizing
reminiscence activities. However, this type of reminiscence does not fit into any of their
categories. What participants described is not escapist or boredom reduction reminiscence
because these types of reminiscence exaggerate the positive aspects of the past and inaccurately
describe memories as much better than they actually were to escape difficult circumstances
(Korte et. al., 2009). Narrative reminiscence appears to be the closest fit. Wong and Watt (1991)
described narrative reminiscence as simply describing past events to an interested listener. They
were not able to ascertain the purpose of this type of reminiscence. However, participants in this
study describe simple reminiscence as a solitary activity. They described it as something they did
for their own enjoyment rather than to relay facts or to entertain someone else. Some participants
also characterized the process as comforting in difficult times. This suggests that Wong and
Watt’s definition of narrative reminiscence could be too narrow. Perhaps it could be redefined as
an enjoyable and comforting reflection on past experiences engaged in for the pleasure of the
person reminiscing and anyone they may be reminiscing with.
It is worth noting that this type of reminiscence closely resembles the type advocated by
reminiscence therapy. In reminiscence therapy, individuals are encouraged to describe past
experiences (usually positive ones) in a group setting. Analyzing memories is not the goal.
Rather, the goal is simply to spend a period of time reflecting on positive parts of the past.
Reminiscence therapy has been shown to have a positive impact on mental health for participants
with and without cognitive impairment. This suggests that the simple reminiscence described by
participants in this study may have a similar effect. However, further research would be required

67
to determine whether reminiscence done in private has a similar or different impact on mental
health when compared with Reminiscence Therapy facilitated in a group setting.
Reminiscing to make sense of circumstances. Several participants also described
reminiscing in a more purposeful way. They reported deliberately thinking back on past
experiences in order to understand their life as a whole or to make sense of their present
circumstances. They talked about how looking back at past experiences put their role as
caregivers into perspective and helped them to see their present circumstances in the context of
the rest of their lives. The term “integrative reminiscence” was used to describe this type of
remembering because it is similar to the integrative reminiscence described by Wong and Watt
(1991).
For some participants, integrative reminiscence meant reflecting on the way their past
experience prepared them to be successful caregivers. For example, Jane said that she has always
been a caregiver for someone in her life. She reflected on how her training and experience as a
nurse prepared her to better care for her husband. For others this type of reminiscence meant
reflecting on how caregiving is an extension of an ongoing relationship with their spouse. For
instance, Alida remembered times in her life when her spouse supported her through challenges.
She explained that remembering those moments helped her to see caregiving as supporting her
husband in the same way that he supported her.
This type of reminiscence is similar to what Wong and Watt (1991) called “integrative
reminiscence.” They explain integrative reminiscence as the process of reviewing life events and
life as a whole in order to gain “a sense of self-worth” and to accept both positive and negative
memories as part of a cohesive life story. They also assert that integrative reminiscence can
result in a sense of “personal meaning” and a feeling of “life satisfaction.” Wong and Watt

68
distinguish integrative reminiscence from instrumental reminiscence. They identify instrumental
reminiscence as the process of reflecting on memories in which one met goals and solved
problems to aid in coping. Wong and Watt (1991) also suggest that instrumental reminiscence
can lead to a sense of accomplishment or mastery because it involves looking back at successes
and applying those skills in the present. While this type of reminiscence was called “integrative
reminiscence” for the purposes of this study, it appears that participants are describing times of
integrative reminiscence which frequently include instrumental reminiscence rather than
engaging in each type of reminiscence separately. If this is true of the broader population, a
definition that combines the two terms may more accurately describe this type of reminiscence
experience.
It is also worth noting that this type of reminiscence closely resembles what is described
as therapeutic reminiscence in the context of both Narrative Therapy and Narrative Gerontology.
None of the participants in the study said that they had participated in any type of reminiscencebased therapy. However, they were each using reminiscence as a coping strategy to varying
degrees. Only two participants explicitly stated that they used their memories as a tool for
understanding their past experiences and current circumstances, yet each said that they benefited
from reminiscing to some extent. This clearly mirrors the belief of theorists in Narrative
Gerontology that older adults naturally reminisce as a way of finding meaning and purpose in
their life stories.
Integrative reminiscence domestic violence, and trauma. A surprising discovery
regarding integrative reminiscence was that participants who had experienced domestic violence
described reminiscing in an integrative way more often and more deliberately than other
participants. They talked about spending time reviewing past experiences in a way that led to a

69
sense of accomplishment both in surviving abuse and in other areas of their lives. Another
participant who had not experienced domestic abuse, but stated that she grew up with alcoholic
parents, described a similar relationship with reminiscence.
For example, both Trena and Jarnell talked about seeking out siblings to reminisce with
and described spending time in together trying to make sense of their life experiences. Trena
explained that she talked with her sister about how her past experiences have shaped her current
life and asked questions like “what made us do this?” and “why do we think this way.” She said
that this type of reflection has helped her recognize her personal growth over the years. Jarnell
talked at length about the differences between her home life with an abusive partner and her
work life where she was a respected employee. She said that reflecting on these experiences both
on her own and with family has led her to conclude that she is a good and capable person.
Wendy, who experienced a very difficult childhood and later spent 18 years caring for
her husband before he was diagnosed with dementia, described her experience with reminiscence
similarly. She reflected back on her childhood years as a difficult time in her life that taught her
many of the skills and self-reliance she later needed to cope with caregiving. Unlike Trena and
Jarnell, she did not describe engaging in this type of reminiscence with another person, but said
that she wished she had someone to reminisce with.
The data here suggests a tendency of victims of domestic violence or trauma towards
integrative reminiscence. However, this difference in reminiscence behaviour has not yet been
studied or documented in the literature. While this study has a small sample size and only two
participants disclosed experiencing domestic violence, the marked difference does merit further
inquiry based on its congruity with previous research.
Previous research shows that telling the “story” of domestic violence in a safe space is

70
beneficial for older survivors in particular (McGarry & Simpson, 2011; Mears, 2003; Roberto,
McPherson, & Brossoie, 2014). However, there are extremely few safe spaces where victims of
domestic violence, who also happen to be older women, feel safe and accepted (McGarry &
Simpson, 2011). Therefore, if older survivors are finding ways and spaces to reflect on their
experiences and share their stories in ways that are healing and meaningful, it is important for
social workers and health care providers to learn from these individuals.
There is some indication in the literature that many elderly victims of domestic violence
are more likely to struggle with mental health in general and a cohesive sense of identity in
particular (McGarry & Simpson, 2011). The type of reminiscence Trena and Jarnell found most
helpful involved reflecting back over their lives as a whole and establishing a sense of self that
was separate from the sense of worthlessness and helplessness instilled by their abusive partners.
The process of reminiscing after their spouses moved to long-term care appears to have been
helpful in developing a more accurate assessment of their positive attributes and skills. They
were each able to see how those traits existed and developed before, during, and after the abuse.
Reminiscing to solidify identity. In addition to better understanding their skills and
abilities, some of the participants appeared to find reminiscence helpful in discovering or
solidifying their sense of identity. They talked about how looking back over their lives helped
them to see a history of challenges met and decisions made that fit into the values and
characteristics they see in themselves. Spending time reminiscing helped to make these patterns
clear.
For example, Trena talked about how she has frequently needed to make “tough
decisions” in her life and that looking back has helped her to see herself as a person who is
capable of making tough decisions both in the present and the future. Quilter described a history

71
in which she provided physical therapy for her family and protected them from long-term
institutional care at all costs. This is something she continued to do while caring for her husband.
Wendy described herself as an optimistic and self-reliant person. She reflected that that those
traits began in childhood and have served her well in many difficult situations including moving
away from home at 15 years of age.
These descriptions match the presuppositions of narrative gerontology in that
participants described being able to look back and see a cohesive story in their life experiences.
This also aligns with Webster’s (1994) definition of identity developing reminiscence.
Participants conveyed a sense of contiguity in “who I am as a person” throughout the ups and
downs of life. There was also recognition of the influence life events could have on one’s
identity. For instance, Quilter described a negative experience in a nursing home as a teenager,
which shaped her view of long-term care facilities for the rest of her life. There appears to be
reciprocal relationship between seeing oneself as a consistent person who has weathered the ups
and downs of life and seeing the way that life shapes personal characteristics and beliefs. This is
what narrative gerontology describes as being both a character in and an author of your own
story (Randall & McKim, 2004).
The ability to reflect on one’s life story this way may be particularly beneficial for older
women who have experienced domestic violence and other forms of trauma. Research suggests
that older women who have experienced domestic violence struggle with the concept of personal
identity (McGarry & Simpson, 2011). As caregivers, they may also have difficulty accessing
certain coping techniques described by participants in this study. For example, they may have
damaged relationships with family members and be reluctant to go to them for support. They
may also struggle to fit into support group settings with women who have not experienced

72
domestic abuse. Therefore, identifying and encouraging alternative coping strategies is
particularly important for this population (McGarry & Simpson, 2011).
From Robert Butler’s initial discussion of reminiscence in 1963 through the more modern
theorists in Narrative Gerontology (such as Randall and Kenyon), researchers have found that
identifying and developing a cohesive sense of self through reminiscence is beneficial to mental
health in old age. Various narrative therapies have been demonstrated as effective in preventing
and sometimes even treating depression and other mental health conditions. Therefore, it is
promising that participants used reminiscence in this way (to varying extents) without
intervention. While this study involved a small sample size, it presents the possibility that
women in similar circumstances could be encouraged to engage in similarly beneficial
reminiscence.
Limitations
While this study appears to provide a useful addition to the literature, there are several
ways in which the design of the study limits the transferability of these findings to other
contexts. First, the study was designed through a qualitative lens and thus seeks to obtain
detailed, in-depth accounts of participants’ personal experiences. Therefore the sample size was
quite small allowing the researcher to spend an extended amount of time interviewing each
participant. Consequently, the sample size was not sufficient to draw conclusions about all (or
even most) caregivers as might be expected in quantitative research. However, the small size
provided more detailed answers to the research question. Therefore, the data collected is detailed
enough to provide a starting place for research with larger sample sizes and different
populations.
In addition, all participants were selected from the city of Prince George, British

73
Columbia. This meant that participants had many shared experiences. Therefore, the results may
not be as easily transferable to caregivers in other communities. However, the study’s location is
unique when compared to other research in narrative gerontology and provides a specific picture
of the way narrative gerontology applies to caregivers in Prince George.
While all potential participants who met the selection criteria were invited to participate,
the selected participants shared many of the same characteristics. All six participants were
Caucasian women in long-term heterosexual marriages. Each of the participants described
themselves as Canadian and said that they had lived in or near Prince George, British Columbia
for many years. Furthermore, all of the participants described their spouses as having advanced
dementia; therefore, most were living in long-term care.
Furthermore, each participant in this study was interviewed only once, so the data
collected provides a snapshot into each client’s experience at only one place and time. While
further interviews might have given a clearer picture of caregivers’ experiences across time, a
single interview per participant better fit the goals and constraints of this study. An important
goal when designing the study was reducing emotional risk to participants by limiting interviews
to the time necessary to answer the research question. Second, given the small sample size, any
attrition between the first and follow-up interviews may have significantly affected results. Each
participant represents one sixth of the sample. Therefore, if any of the participants were unable to
complete the second interview, it would be difficult to make meaningful comparisons between
the two sets of interview data. Finally, the time constraints of this particular project (i.e.,
graduate student research) precluded multiple, sequential interviews.
Finally, since previous research on the topic is limited, this study was exploratory in
nature. Therefore the researcher developed the study design and interview guide independent of

74
any prior examples. There is a possibility the design used was not the most effective way to
study the topic. However, given the lack of similar research, an exploratory design was merited.
Recommendations for Future Research
Due in part to the limited and exploratory nature of this study, the findings raise several
possibilities for future research. Most importantly, more research is needed in the area of
reminiscence and domestic violence. While the results of this study indicate that the use of
reminiscence with older adults who have experienced domestic abuse are promising, these
results are based on the experiences of just two women. Therefore it is possible that other
characteristics that are common to these two women have led them to have similar experiences
with reminiscence. Therefore a research study specifically examining the reminiscence
behaviours and needs of older women who have experienced abuse could provide valuable
insight.
Similarly, more research is needed to identify which populations are most likely to
benefit from assistance with reminiscence. Multiple forms of reminiscence and narrative
therapies have been developed and studied. However, it is not yet clear which populations of
older adults need or would benefit from therapeutic intervention and which populations are more
likely to engage in beneficial reminiscence without intervention. This type of research is
important because it would allow social workers and other mental health professionals to focus
resources more efficiently.
The results presented here highlight the value of integrative reminiscence in particular.
However, the most common narrative therapy used with older adults is Reminiscence Therapy.
Reminiscence therapy gives older adults the opportunity to think back over their lives in a
structured way; integrative reminiscence is not the goal. Simple reminiscence can be comforting

75
and may be the only form of reminiscence available to patients with dementia. However, it may
be beneficial to encourage integrative reminiscence for more cognitively able older adults.
Future research could examine the best method and setting for encouraging this type of
reminiscence. For example, it would be valuable to know whether integrative reminiscence is
most likely when individuals reminisce independently, in a group setting or in individual
counselling. Furthermore, it would be important to know if any particular population should be
excluded from group or individual reminiscence activities due to past trauma or contraindicatory
mental health issues.
Finally, since this study involved only women, the results do not provide information
about potential differences in reminiscence experiences between women and men. Because
previous research has shown that men and women cope differently with caregiving, it is possible
that the results would be different with a sample of male caregivers. Future research could
explore the ways in which men and women reminisce differently. For example, health care
providers would benefit from knowing whether men are comfortable with group reminiscence
therapy and whether they are more or less likely to benefit from narrative therapies than women.
Implications for Practice
Although this research is exploratory and there is much more research to be done, there
are ways that social workers and health care providers, in general, can apply these findings in
their everyday practice. This study adds to the consensus that older adults spend time
reminiscing in productive ways even without intervention. Therefore, the simplest way to apply
these findings to practice is to allow caregivers (and older adults in general) time and space to
reminisce.

76
For healthcare providers. Front line health care providers (e.g., doctors, nurses, and
physiotherapists, etc.) regularly spend time gathering information from caregivers when patients
with dementia are unable to give an accurate medical history. These conversations often involve
asking caregivers to describe changes in their spouses over time. During these conversations,
caregivers may naturally start to reminisce about their relationship with their spouse and the
memories they have of their life together. Health care providers can expect these conversational
detours and allow them to occur. Knowing that reminiscing can be a helpful coping strategy for
caregivers, professionals in these contexts can simply allow caregivers to reminisce in a safe
context. Allowing reminiscence in the context of a medical conversation would mean allowing
more time than would be necessary if information gathering was the only goal of the
conversation. Listening actively and empathetically would also be a priority.
Health care providers should also be prepared to hear about both positive and negative
memories. Listening to a caregiver tell about her memories of trips with her husband before he
became ill may seem simple on the surface. However, that memory may come with difficult
emotions as the caregiver tries to fit the news of a move to long-term care into a story they
thought would end with years of happy retirement. There may also be times when the memories
themselves are extremely difficult. For instance, a caregiver may disclose a memory of domestic
abuse for the first time if they feel safe with the person they are speaking to. In these situations
more skill is required to provide an appropriate response and refer the client (or patient) to any
necessary services. Depending on the discipline of the health care provider, this may require
additional training and debriefing.
Health care providers can also encourage caregivers to spend time reminiscing. This may
work best in the context of a residential care facility where caregivers spend time visiting their

77
partners. In this context, staff that have good rapport with an individual caregiver may ask about
a couple’s life together. This could serve both as a way of better understanding the person with
dementia and as a way to encourage reminiscence for the caregiver. However, in this context the
suggestion and conversation should be causal and come from a place of curiosity. Alternatively
facilities could involve caregivers in reminiscence activities with their partners. For example,
activities like creating memory books or boxes and sharing positive memories in a group setting
has been demonstrated to positively affect the mental health of patients with dementia. Facilities
could encourage caregivers to attend these activities with their spouses. However, it is important
to ensure that all opportunities to participate in group activities and share memories are voluntary
and that none of the participants feel pressured or uncomfortable.
For social workers. Social workers may have some of the same opportunities as other
health care providers. For example, they may be asked to collect life history information. This
information is often used to help staff communicate better with patients who may not have the
cognitive ability to tell their stories and express their interests or preferences. They may also
have the opportunity for longer conversations with caregivers when completing intake
assessments in medical or community agency contexts. In these situations, social workers can
provide space for clients to share and reflect on past experiences. Social workers are uniquely
equipped to provide a safe space for clients to share difficult memories. This may mean that
clients share memories more often because they feel secure to share with an empathetic and
confidential listener. Social workers are also able to refer clients to appropriate services if they
need ongoing mental health support.
There may also be opportunities for social workers to encourage reminiscence in group
settings. For instance they may already facilitate a support group for caregivers. In group

78
settings, social workers can allow caregivers to share their memories without feeling that their
stories are out of place. If group members come from similar demographics, sharing memories
can be a way to find common ground and develop supportive relationships. The social worker
may also choose to ask questions that help group members share their stories. In this context,
active listening from the social worker and other group members could help clients think about
their memories in new ways.
Finally, in a one-on-one or counselling context, encouraging integrative reminiscence
may fit quite naturally. For example, a common counseling technique involves asking the client
to look for exceptions. The goal of this technique is to challenge the way a client thinks about a
certain aspect of their life by asking them to find an example does not fit (Erford, Eaves, Bryant,
& Young, 2010). In this situation, the counsellor is typically asking the client to share a memory
in which they were able cope with a similar situation to the one they are now facing. In effect
this technique is a way of teaching the client how to use reminiscing as a positive tool. If a client
is already sharing a memory, the social worker may respond in ways that encourage integrative
reminiscence as a natural part of the therapeutic process. For example, they might comment that
the client showed a great deal of strength and determination to cope with the situation in the way
they are describing. By pointing out the client’s strengths in this way, they are introducing a new
way of thinking about the memory the client has just described. While many individual
counselling techniques already deal with reminiscence material, understanding the significance
of reminiscing can help social workers take advantage of moments when clients share their
stories.
Conclusion
This thesis has explored several ways in which older female caregivers use reminiscence

79
as a coping strategy. The findings presented here both confirm and add to previous research that
suggests older adults can benefit from reminiscing independently and with others. Several ways
that health care providers and social workers can encourage positive reminiscence strategies with
their clients have also been identified. In addition, the researcher has recommended ways in
which future research in this area could expand our understanding of how older people engage
with reminiscence and how social workers can facilitate beneficial reminiscence strategies.

80
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Appendix A: Participant Information Letter

Information Letter
July 1, 2016
Project Title: Narrative Influences on Women’s Dementia Caregiving Experiences
Who is conducting the study?
Karen Koning, a Master’s of Social Work student at the University of Northern British Columbia
(UNBC), is conducting this study. This research project will be part of her Master’s thesis.
Student Researcher: Karen Koning – MSW Student
University of Northern British Columbia
Prince George, BC V2N 4Z9
(604) 250-6581 or koning@unbc.ca
Faculty Supervisor: Dawn Hemingway – Associate Professor
University of Northern British Columbia
Prince George, BC V2N 4Z9
(250) 960-5694 or dawn.hemingway@unbc.ca
Why are we doing this study?
You are being invited to take part in this research study because you are an older women (65 or
older) taking care of a spouse with dementia. We are asking people like you to help us
understand how older women cope with caregiving.
Participation in this study is entirely voluntary and you are free not to answer any questions that
make you feel uncomfortable. You are also free to withdraw from this study at any time. If you
do, any information you have already given to us will be destroyed unless you ask us to keep it.
What happens if you say “Yes, I want to be in the study?”
If you say 'Yes’, here is what will happen:
• You will meet with the Karen Koning for 1-2 hours in a place you feel comfortable (eg.
your home or another place agreeable to you).
• First, you will be given you a form with simple questions to answer (like “What is your
age?”).

87

•
•

Next, you will talk with Karen Koning for 1hour about what it’s like to have a spouse
with dementia
Your conversation with the Karen will be audio-recorded so that she can remember what
you talked about. Karen Koning and her supervisor (Professor Dawn Hemingway) are the
only people who will have access to the recording.

Is there any way that participating in this study could harm you?
We do not think there is anything in this study that could harm you. Some of the questions we
ask may seem sensitive or personal. You do not have to answer any question if you do not want
to.
If talking to the researcher is upsetting, you might want to talk to someone about it. We will give
you a list of phone numbers to call just in case.
What are the benefits of participating?
You might find it helpful to talk about how you support your spouse and the things you are doing
to cope with the difficult parts of being a caregiver.
How will your privacy be protected?
Your name and any other information that might reveal your identity will not be used except on
your consent form. You will be asked to make up a pseudonym (a false name) to be used instead
of your real name. Your real name will not be used on any research papers or computer files.
All paper files will be kept in a locked filing cabinet in Karen Koning’s home office. Computer
files will be stored on a password protected on a secure computer drive. This consent form will
be kept separately (because it uses your real name) in a locked filing cabinet in Dawn
Hemingway’s locked office at UNBC. The only people who will see these files are Karen
Koning and Dawn Hemingway.
A maximum of 5 years after Karen has successfully completed her thesis, all computer files will
be deleted and all paper files will be shredded.
Please be aware that we cannot protect your privacy if:
• You tell us that you are going to hurt yourself
• You tell us that you have or are going to hurt someone else.
If this happens we are required to report this information to the appropriate authorities.

88

Study Results
The results of this study will be reported in Karen Koning’s graduate thesis and a copy will be
available in the UNBC library. The study may also be published in journal articles and books. If
you provide your contact information we will send you a short summary of what we learned
from the study and information about how to find the thesis in the library.
Will you be paid for your time/taking part in this research study?
We will not pay you for the time you take to be in this study.
Who can you contact if you have questions about the study?
If you have any questions about the study, please contact Karen Koning (Student Researcher) at
604-250-6581 or koning@unbc.ca.
You may also contact Dawn Hemingway (Faculty Supervisor) at 250-960-5694 or
dawn.hemingway@unbc.ca.
Who can you contact if you have complaints or concerns about the study?
If you have any concerns or complaints about your rights as a research participant and/or your
experiences while participating in this study, contact the UNBC Office of Research at 250-9606735 or by e-mail at reb@unbc.ca.

Thank you for your interest in this study!
If you have questions about any of the information above, please ask.
If you want to participate, please fill in and sign the form on the next page.

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Appendix B: Participant Consent Form

CONSENT FORM
Taking part in this study is entirely up to you. You have the right to refuse to participate in this
study. If you decide to take part, you may choose to pull out of the study at any time without
giving a reason and doing so will not impact you negatively in any way.

I have read the information in the information letter about this research project and/or it

Yes

No

Yes

No

Yes

No

I have been given a copy of this form.

Yes

No

I agree to be audio-recorded.

Yes

No

I would like a summary of the study results send to me at the following e-mail or

Yes

No

has been described to me.
I have had the opportunity to ask questions about my involvement and to receive any
additional details I asked for.
I understand that if I agree to participate in this project, I may withdraw from the project
at any time up until the report completion, with no consequences of any kind.

mailing address:

__________________________________________
__________________________________________
__________________________________________
Your signature indicates that you consent to participate in this study and that you have received a
copy of this consent form for your own records.

_______________________________
Signature of Participant

______________________________
Date

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Appendix C: Participant Recruitment

Are you caring for a
spouse with Dementia?
We are looking for research participants!
What is the study about?
We want to learn more about what it’s like to take care of a spouse with dementia
and how caregivers deal with stress.

Who can participate?
We are looking for women 65 or older who are caring for a spouse or partner with
dementia.

Why participate?
To help social workers and other health care providers understand how to help
caregivers like you.

If you decide to participate you will:
• Meet with the researcher (in your home or another place agreeable to you )
for about 1-2 hours
• Fill in a short questionnaire
• Talk with the researcher about what your life is like as a caregiver

For more information call Karen Koning (Master of
Social Work Student) at 778-415-9508 (local call)

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

Karen Koning
MSW Student

778-415-9508

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Appendix D: Demographic Information Form

Demographic Information Form
Please answer the following questions. All your answers will be kept confidential. If you
do not want to answer a question please simply skip it.
What is your age?
What is your gender?
What is your partner’s age?
What is your partner’s gender?
How long have you been caring for your spouse with dementia?
Do you live with your partner or separately?
If you live separately, where does your partner live (eg. care facility,
assisted living)?
If your partner lives in a care facility, how long have they lived there?
What is your marital status?
(e.g., Married, Separated, Common-law, Divorced, Single, Other)
What is your ethnicity (eg. Canadian, First Nations, Métis East
Indian, Chinese, Ukrainian etc.)?
What is your highest level of education completed?
(e.g., Elementary School, High School, College, Bachelor’s Degree,
Master’s Degree, Doctorate Degree, Other)
What is your employment status?
(e.g., Retired, Part-Time, Full Time)

Who lives in your home (eg. you, your spouse/partner, children, grandchildren etc.)?

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Appendix E: Interview Guide

Interview Guide

First I want to talk about how you became a caregiver and what being a caregiver is like
1. Tell me the story of how you became a caregiver for your partner.
a. When did you first start to think of yourself as a caregiver?
2. Tell me about your everyday life caring for your partner with dementia.
a. What parts of your life, if any, have changed since you became a
caregiver?
3. How do you feel about being a caregiver?
a. Do you sometimes feel differently?
4. If you sometimes have negative feelings about caregiving, what makes things
better?
a. Is there anything you do that helps?
b. Is there anything you think about or “tell yourself” that helps?

My next questions are about your memories. I want to ask you about your memories
and which memories make you feel good.
5. Tell me about any memories you have that help you feel good about yourself as
a person or as a caregiver.
a. What is it about those memories that make you feel good?
6. Tell me about any memories you have that help you feel positive about your
ability to cope with the emotions of caregiving?
a. Tell me about them.
b. How do those memories help?
7. Tell me about any memories you have that help you feel good about your
relationship with your spouse?
a. Tell me about them.
b. What is it about those memories that make you feel good?
8. When do you think about these helpful memories we have been talking about?

93

9. Sometime people think about specific memories on purpose to help them feel
better. If you that is true for you, can you tell me about a time when you did that?
a. How did that make you feel?

10. Are there any other memories that help you feel better?
a. Tell me about them.
b. How do they help?
11. Is there anything else you would like to tell me before we finish?

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Appendix F: Community Resource list

Community Resource List
Alzheimer’s Society of BC (Prince George Office)
Phone: 250-564-7533 Toll-free: 1-866-564-7533
Dementia Helpline: 1-800-936-6033 (9am – 4pm Province Wide Toll Free)
Location:
202 - 575 Quebec Street
Prince George, B.C. V2L 1W6

Northern Health – Mental Health and Addictions
Phone: 250-565-2668
Location:
#201 – 1705 3rd Avenue
Prince George, B.C. V2L 3G7

Northern BC 24-Hour Crisis Line: 1-888-562-1214 (Toll Free)

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Appendix G: Research Ethics Board Certificates

RESEARCH ETHICS BOARD
MEMORANDUM
To:
CC:

Karen Koning
Dawn Hemingway

From:

Henry Harder, Chair
Research Ethics Board

Date:

October 20, 2016

Re:

E2016.0815.060.00
Narrative Influences on Northern BC Women’s Experiences of Caring for a
Spouse with Dementia

Thank you for submitting revisions to the Research Ethics Board (REB) regarding the abovenoted proposal. Your revisions have been approved.
We are pleased to issue approval for the above named study for a period of 12 months from the
date of this letter. Continuation beyond that date will require further review and renewal of REB
approval. Any changes or amendments to the protocol or consent form must be approved by the
REB.
Good luck with your research.
Sincerely,

Dr. Henry Harder
Chair, Research Ethics Board

96

RESEARCH ETHICS BOARD
MEMORANDUM
To:
CC:

Karen Koning
Dawn Hemingway

From:

Henry Harder, Chair
Research Ethics Board

Date:

January 17, 2017

Re:

E2016.0815.060.00(a)
Narrative Influences on Northern BC Women’s Experiences of Caring for a
Spouse with Dementia

Thank you for submitting amendments to the above-noted proposal to the Research Ethics
Board (REB).
The amendments have been approved until the date as provided in the original protocol
approval for this project (i.e. October 19, 2017). Continuation beyond that date will require
further review and renewal of REB approval. Any further changes or amendments to the
protocol or consent form must be approved by the REB.
Good luck with your research.
Sincerely,

Dr. Henry Harder
Chair, Research Ethics Board