© 2015 julie lynn watson -...
TRANSCRIPT
AN EVALUATION OF A MEMORY ENHANCEMENT PROGRAM FOR PEOPLE WITH
MILD COGNITIVE IMPAIRMENTS ON FAMILY CAREGIVER OUTCOMES
By
JULIE LYNN WATSON
A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
UNIVERSITY OF FLORIDA
2015
© 2015 Julie Lynn Watson
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ACKNOWLEDGMENTS
I would like to thank my husband, Derek Coghlan, for his support over the past 4 years.
This would not have been at all possible without him. It is my hope that I set an example for my
two sons, Jack and Finn, to push themselves to keep learning and growing, even into adulthood.
I was lucky enough to have the support of my family as well, which meant so much to me
through the ups and downs of this process. This includes my mother, Elizabeth (Krugle)
Watson, who somehow instilled in me that I could do anything; and my father, Edward Watson,
my eternal cheerleader. My aunt, Jodi (Krugle) Yuhas, grandmother, Lucy (Pizoli) Krugle,
brother, Richard Watson, and sister Elisa Watson (Smith) were all instrumental in helping me get
through this arduous journey. There are too many supportive friends to list, but I hope to return
the favors bestowed on my by all of them.
I would also like to thank my dissertation chair, Dr. Mary Ellen Young. Her guidance,
understanding, and support were instrumental. Without her mentorship I would not have made it
to this point. I am truly grateful for the time you spent with me and will always treasure you as a
mentor and friend.
Thank you to my dissertation committee, Dr. Juliette Christie, Dr. Barbara Lutz, and Dr.
Dorian Rose. Each of you helped me to grow in different ways. Your questions and feedback
have meant so much to me. I thank each of you for sharing your knowledge and insight. The
Memory Enhancement Program staff, participants, and caregivers were generous with their
support and willingness to contribute their stories for this research. Finally, thank you to Lorie
Richards for encouraging me to pursue this degree in the first place and giving me the confidence
to try.
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TABLE OF CONTENTS
page
ACKNOWLEDGMENTS ...............................................................................................................3
LIST OF TABLES ...........................................................................................................................6
LIST OF FIGURES .........................................................................................................................7
LIST OF ABBREVIATIONS ..........................................................................................................8
ABSTRACT ...................................................................................................................................10
CHAPTER
1 INTRODUCTION ..................................................................................................................12
MCI Caregiving: A Public Health Issue .................................................................................13 Memory Enhancement Program .............................................................................................15
Purpose ...................................................................................................................................17 Methodology ...........................................................................................................................18 Reflexivity Statement .............................................................................................................18
2 LITERATURE REVIEW .......................................................................................................21
Mild Cognitive Impairment Diagnosis ...................................................................................22
MCI Functional Limitations ...................................................................................................24 MCI Interventions ...................................................................................................................26
Summary .................................................................................................................................29 MCI Caregivers ......................................................................................................................29
Health ..............................................................................................................................30 Caregiver Experience ......................................................................................................30
Caregiver Interventions ...................................................................................................31 Summary ..........................................................................................................................32
Stress Process Model ..............................................................................................................32 Conclusion ..............................................................................................................................36
3 METHODS .............................................................................................................................37
Design and Theoretical Framework ........................................................................................37 Sampling .................................................................................................................................37
Data Collection .......................................................................................................................40 Measures .................................................................................................................................42 Data Analysis ..........................................................................................................................46 Scientific Rigor .......................................................................................................................47
4 FINDINGS ..............................................................................................................................49
5
Study Participants ...................................................................................................................50
Caregiver Experience with the MEP ......................................................................................51 Participation Framework .................................................................................................52 Finding and Attending the Program ................................................................................53
Impact of the Program on Caregivers ..............................................................................54 Caregiver benefits ....................................................................................................55 Care recipient benefit. ..............................................................................................58
Program Feedback ...........................................................................................................61 Stress Process Model ..............................................................................................................65
Background and Context .................................................................................................66 Primary and Secondary Stressors ....................................................................................67 Mediating Conditions ......................................................................................................71 Outcomes .........................................................................................................................73
Summary .................................................................................................................................74
5 DISCUSSION .........................................................................................................................76
Participation Framework ........................................................................................................77 Application of the Stress Process Model ................................................................................80
Background and Context .................................................................................................81 Primary and Secondary Stressors ....................................................................................82 Mediating Conditions ......................................................................................................85
MEP as a Mediating Condition .......................................................................................86 Outcomes .........................................................................................................................88
Limitations ..............................................................................................................................89 Research Recommendations ...................................................................................................90
Participation Continuum ..................................................................................................91 Stress Process Model .......................................................................................................91
Survey Instruments ..........................................................................................................92 Recommendations for Cognitive Intervention Programs .......................................................92 Public Health Implications .....................................................................................................93
Conclusion ..............................................................................................................................95
APPENDIX
A CAREGIVER INFORMED CONSENT FORM ....................................................................96
B PARTICIPANT INFORMED CONSENT FORM ...............................................................106
C SURVEYS ............................................................................................................................115
LIST OF REFERENCES .............................................................................................................125
BIOGRAPHICAL SKETCH .......................................................................................................134
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LIST OF TABLES
Table page
3-1 Interview guide ..................................................................................................................43
4-1 Caregiver and care recipient demographics .......................................................................51
7
LIST OF FIGURES
Figure page
3-1 Sampling process ...............................................................................................................39
4-1 Components of proposed framework .................................................................................52
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LIST OF ABBREVIATIONS
AA Alzheimer’s Association
AD Alzheimer’s Disease
ADL Activities of daily living
aMCI Amnesic mild cognitive impairment
APA American Psychological Association
BADL Basic activities of daily living
CESD Center for Epidemiologic Studies Depression Scale
CESD-R Center for Epidemiologic Studies Depression Scale-Revised
COA Council on Aging
CSI Caregiver Strain Index
DEMA Daily Enhancement of Meaningful Activity
DSM-5 Diagnostic Statistical Manual-5
FDA Food and Drug Administration
IADL Instrumental activities of daily living
LBD Lewy body dementia
MCI Mild cognitive impairment
MCSI Modified Caregiver Strain Index
MEP Memory enhancement program
MMSE Mini Mental Skills Evaluation
mNCD Mild neurocognitive disorder
MoCA Montreal Cognitive Assessment
naMCI Non-amnesitic mild cognitive impairment
NIA-AA National Institute on Aging-Alzheimer’s Association
OT Occupational therapist
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QOL-AD Quality of Life-Alzheimer’s Disease
SF-36 Short Form 36
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Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy
AN EVALUATION OF A MEMORY ENHANCEMENT PROGRAM FOR PEOPLE WITH
MILD COGNITIVE IMPAIRMENTS ON FAMILY CAREGIVER OUTCOMES
By
Julie Lynn Watson
December 2015
Chair: Mary Ellen Young
Major: Public Health
Caregivers of people with mild cognitive impairments (MCI) experience stress and strain
that can have a significant impact on their health. There is little research on how cognitive
intervention programs for people with mild cognitive impairments may impact the caregiver.
The purpose of this study is to evaluate how a community-based cognitive intervention program
for a person with mild cognitive impairments impacts their family caregiver. Semi-structured
interviews were conducted with 12 caregivers of people with mild cognitive impairments.
Interviews were analyzed using a grounded theory approach. Analysis of interviews brought to
light a framework that helps explain participation in the Memory Enhancement Program. The
participation framework consists of a continuum that begins prior to participation in the program.
Interviews suggested that caregivers chose to begin participation when the perceived
benefits of the program outweighed perceived barriers, and participation continued as long as the
perceived benefits outweighed the hassle factors associated with participation. And finally,
participation ended when the care recipient’s symptoms had progressed or the barriers to
participation became too great and outweighed the perceived benefits. Analysis of interview
responses also support the use of the stress process model with MCI caregivers. All components
of the model were represented in the data. However, the fit of the MEP as a background and
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contextual variable was not congruent with the data. A modified placement of the MEP as a
mediating condition is recommended. Findings from this study offer insight on how to support
family caregivers and overcome barriers to participation in community-based cognitive
intervention programs. The modification of the stress process model to accommodate a unique
program offers insight into how these programs impact the stress process of MCI caregivers.
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CHAPTER 1
INTRODUCTION
Mild cognitive impairment (MCI) is more prevalent in the United States than dementia,
and the prevalence is expected to increase as the population ages (Plassman et al., 2008). It is
estimated that up to 20% of older adults are affected by MCI, almost three times the number
affected by dementia (Langa & Levine, 2014; Lu & Haase, 2009; Ward, Arrighi, Michels, &
Cedarbaum, 2012). MCI has been defined as a condition with mild but noticeable changes in
cognitive abilities (Alzheimer's Association [AA], 2014). It has also been defined as “a clinical
stage on the continuum of cognitive decline between what is considered normal aging and
dementia” (Langa & Levine, 2014, p. 2552).
Although not all people with MCI progress to dementia, most cases of MCI eventually
progress to Alzheimer’s and other types of dementia, at the rate of 12% per year, higher than in
the general population (Petersen, 2004; Plassman et al., 2008). In 2014, costs for health, long-
term care, and hospice for people with dementia will top $226 billion (AA, 2015). Alzheimer’s
type dementia alone is the fifth leading cause of death in people aged 65 and older (Murphy, Xu,
& Kochanek, 2013). Before death, a person with AD-dementia and other types of dementia may
live through many years of disability and morbidity, and many of them start this journey with
MCI.
People with MCI have difficulty with activities like decision making, household
management, social relationships, and other instrumental activities of daily living (IADL), such
as medication management, transportation, and meal preparation. They are often supported in
these activities by family caregivers (Blieszner & Roberto, 2010; Seeher, Low, Reppermund, &
Brodaty, 2013). Family caregivers, usually family or friends, are people who provide unpaid
assistance to another individual. Currently, 15 million people provide unpaid care to those with
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some form of dementia (AA, 2014). In 2013, unpaid family caregivers provided an estimated
17.7 billion hours of care, valued at over $220 billion, a higher amount than direct care costs
(AA, 2014). The care that these caregivers provide is essential for keeping the health and care
related costs for people with dementia manageable in the future, highlighting the significance of
this issue.
MCI Caregiving: A Public Health Issue
Although in general, caregivers report some positive feelings related to caregiving
activities, they also report high levels of stress and depression (Thies & Bleiler, 2013). The
stress and strain family caregivers experience contributes to decreased physical health, increased
health care costs, and even death. This means family caregiver health becomes a recognized
public health issue with implications not just for the family caregiver, but for the care recipient
too (Perkins et al., 2013; Talley & Crews, 2007; Thies & Bleiler, 2013). While there is an
abundance of research on health outcomes for caregivers of patients with other diagnoses, such
as dementia (Moon & Dilworth-Anderson, 2014; Richardson, Lee, Berg-Weger, & Grossberg,
2013) and stroke (King, Hartke, & Houle, 2010; Tooth, McKenna, Barnett, Prescott, & Murphy,
2005), research is less comprehensive on health outcomes for MCI caregivers.
Depression and the burden of care have been the most investigated outcomes related to
caregiver health. Depression rates among MCI caregivers have been found to be higher than
those among the rest of population, but below that of Alzheimer’s caregivers. It is estimated that
5-23% of MCI caregivers are affected by depression (Blieszner & Roberto, 2010; Garand, Dew,
Eazor, DeKosky, & Reynolds, 2005; Seeher et al., 2013; Springate & Tremont, 2012). Clinically
significant levels of burden are often reported by MCI caregivers. It is estimated that 20-36% are
affected (Hayashi et al., 2013; Paradise et al., 2014; Springate & Tremont, 2012). Garand et al.
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(2005) found that even after controlling for certain risk factors, subjective reports of burden and
anxiety were correlated with symptoms of depression and increased lifestyle constraints.
The social impact was investigated in a literature review on the impact of early diagnosis
for dementia caregivers by de Vugt & Verhey (2013) which found an increased risk of social
isolation among MCI caregivers. In a cross sectional study, Lu et al. (2007) found that social
isolation was correlated with depression among MCI caregivers. In a separate phenomenological
study of spousal MCI caregivers, changes in social activity and social isolation were common
themes (Lu & Haase, 2009).
The physiological impact on caregivers was investigated in studies by Savla et al. (2013)
and Savla, Roberto, Blieszner, Cox, and Gwazdauskas (2011). These studies found that MCI
spousal caregiver daily objective stressors were associated with elevated cortisol levels
compared to normal levels and they presented with a flatter slope of cortisol levels over the
course of the day, meaning that cortisol levels remained higher than normal throughout the day
(Savla et al., 2013, 2011). Increased cortisol levels, along with depressive symptoms, increase
the risk of stress-related diseases with resulting morbidity and mortality implications (Pinquart &
Sorensen, 2007; Savla et al., 2013; Vitaliano, Zhang, & Scanlan, 2003).
There are unique challenges for MCI caregivers due to the potential longevity of their
caregiving career (Ryan et al., 2010). The term career, used in this context, refers to a person’s
history of being an unpaid family caregiver. Research on caregivers of people with Alzheimer’s
disease (AD) and other types of dementia has limited relevance for caregivers of people with
MCI, who have different concerns and needs (Blieszner & Roberto, 2010). They are caregivers
who have time to prepare for the future, making them ideal targets for preventative measures
(Ryan et al., 2010). According to Ryan (2010), MCI caregivers are already experiencing a need
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for increased services comparable to that of Alzheimer’s caregivers, but there is limited evidence
on interventions and outcomes for caregivers of people with MCI (Austrom & Lu, 2009).
Initiating treatment and care management early in the MCI phase has the potential to improve the
health and well-being of both the patients and caregivers. This could also possibly decrease
healthcare costs, with some evidence that this early period is a “critical window” of opportunity
(Austrom & Lu, 2009, p. 392).
It is important to note that medication interventions have not been found effective in
managing MCI symptoms (Langa & Levine, 2014; Li et al., 2011). However, interventions
focusing on memory strategy training, psycho-education, lifestyle changes, and attention skills
have shown the potential to increase cognitive function, memory, executive functions,
processing, and attention (Aguirre, Hoare, et al., 2013; Horr, Messinger-Rapport, & Pillai, 2015;
Li et al., 2011; Reijnders, van Heugten, & van Boxtel, 2013; Wang, Wang, Tan, Meng, & Tan,
2014). These types of cognitive intervention programs have shown secondary benefits beyond
specific cognitive changes that translate to improvements in overall function and self-reported
well-being, with treatment effects lasting for up to 3 months post treatment (Li et al., 2011).
None of the studies assessed the impact of these programs for a person with MCI on the
caregiver or the caregiving experience.
Memory Enhancement Program
This project is being completed in partnership with the Council on Aging (COA) of St.
Johns County, FL, Memory Enhancement Program (MEP), providing an important link between
research and practice. The MEP started in 2010 and currently serves 82 people with mild
cognitive impairments. Referrals to the program are generally made through word of mouth,
health care providers, or from ads in the newspaper, on the side of busses, and through flyers
available in the community.
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The criteria to participate in the program include the following: 1) individuals must not
exhibit persistent mental confusion or disruptive behaviors; and 2) they must also be able to
transfer, feed themselves, and toilet independently. It is important to note that a specific
diagnosis is not required from a physician to participate in the program. However, the program
criteria for participation are consistent with the diagnostic criteria utilized in MCI research
(Gerstenecker & Mast, 2014; Ward, Arrighi, Michels, & Cedarbaum, 2012).
There are six MEP program sites across St. Johns County, three in St. Augustine, Florida,
two in Ponte Vedra, Florida, and one in Fruit Cove, Florida. Each program operates two times
per week for five hours during each session and includes education, activities, and exercises all
related to brain function. Other alternative healing modalities such as aroma therapy,
diaphragmatic breathing, humor therapy, music therapy, meditation, and chair exercise are
incorporated as well. The age breakdown of participants is as follows: 1% are under the age of
50; no participants between the ages of 50-60; 5% are between the ages of 60-69; 18% are
between the ages of 70-79; 48% aged 80 years and older; and 28% unknown. Whites make up
92% of the program participants, 5% are Hispanic, and 3% are unknown. The cost of the
program is $10 per hour, with approximately 50% of the participants paying the full amount and
the other 50% paying a partial fee. Qualification for the partial fee is based on financial need.
Anecdotally, caregivers have reported that the program is beneficial, but no research-
based outcomes have been assessed. This ongoing program is funded both publicly and
privately. The MEP manager requested help in evaluating caregiver outcomes associated with
the program and gathering feedback from caregivers about the program. The MEP manager, in
conjunction with the COA, plans to provide education and training to other organizations across
the country about their program, meaning that the results of this study have the potential to not
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only contribute to the body of knowledge, but to reach a broad number of community
organizations and in turn a larger number of caregivers.
Purpose
Caregiving for someone with MCI can have a significant impact on health and well-being
due to the stress and strain experienced as a result of helping someone with cognitive
impairments. Cognitive intervention programs have been found to be effective in mitigating
some of the impairments experienced by the person with MCI. Most public health research and
other programs evaluate interventions solely on outcomes related to the person targeted in the
intervention. In the case of MCI, it is essential to consider the secondary impact that cognitive
intervention programs have on the caregiving experience and caregiving outcomes because the
outcomes of each person are inextricably linked. Lu and Haase (2009) describe the time
immediately after an MCI diagnosis as a critical time for family caregivers to develop self-
management skills to prevent negative outcomes later. An understanding of how community-
based cognitive intervention programs for people with MCI impact the family caregiving
experience is needed to understand how these programs might relieve caregiver stress and
decrease negative health outcomes for caregivers. A more thorough understanding of how the
caregiving experience is impacted will offer insight into new ways to support family caregivers
and prevent negative health outcomes both directly and indirectly through new and existing
programs.
The specific aims of this project were to:
1. Describe the caregiver experience with a community-based cognitive intervention
program for people with MCI to identify variables that potentially influence caregiver
outcomes.
2. Evaluate the caregiver experience and outcomes resulting from care recipient
participation in a community-based cognitive intervention program.
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Methodology
A grounded theory approach will be utilized in this study. Grounded theory is based in
the sociological perspective of symbolic interactionism which can provide interpretive
explanations grounded in the experience of people who have lived through a phenomenon of
interest. It is useful for areas of inquiry lacking foundational research (Creswell, 2013; Glaser &
Strauss, 1967). As this is an exploratory project, the goal is to develop a conceptual framework
to serve as a foundation for future inquiry. This approach will allow for interpretive integration
of parts of the data that go beyond labeling and ordering the data into categories (Sandelowski &
Barroso, 2003). Findings provide insight into the needs of this understudied population. New
ways to better meet caregivers’ needs and potentially prevent negative health outcomes will be
explored. Demographic information was collected about the overall population which was used
to select participants for maximum variation purposive sampling. However, this is not a mixed
methods study as the exploration of qualitative data was the intention.
Reflexivity Statement
A standard of qualitative research is reflexivity, which involves understanding and
reporting applicable preconceptions related to the research (Cohen & Crabtree, 2008).
Caregiving is something that I was drawn to at an early age. I was nearly four years old when
my brother and sister were born, my father worked long hours, and my mother readily accepted
my “help” to take care of them. Helping my mother made me feel proud of myself and I also
enjoyed taking care of the twins. Babysitting and spending time with older relatives during my
childhood and teenage years was a natural thing for me.
When I was in high school my mother was diagnosed with Guillain-Barré Syndrome; she
was severely affected by the disease. My life changed with her diagnosis, hospitalization, and
eventual slow recovery. After going to school during the day, my grandmother and I would
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drive about 50 minutes into Washington D.C. where my mother was receiving care at a
rehabilitation hospital. Once there, we spent the evening with her, helping her eat dinner, taking
her to the bathroom, and getting her ready for bed. Yes, there was a staff available to do these
things, but they didn’t seem able to provide the care that we did, and she was more comfortable
with us. Miraculously she recovered with only minor deficits.
It was this experience with my mother that led me toward the path of becoming an
occupational therapist (OT). As an OT, I worked with many older adult clients and also with
their husbands, wives, sons, daughters, grandchildren, friends, and paid help. It became clear to
me, through my practice, that these caregivers were people who needed help too. They found
themselves in situations that were very difficult; they often didn’t have much understanding of
what resources were available to them, and they certainly didn’t know what their future might
look like or what their options were. I did my best to go above and beyond to help them as well
as my clients.
A few years after my graduation from OT school, my grandfather, who suffered for many
years with chronic health issues, was diagnosed with Progressive Supranuclear Palsy. He
already required help and was using assistive devices to get through his day. When visiting, I
would make recommendations that were not always followed. The progression of his disease
was quick. Before he lost the ability to communicate, he made a request to my grandmother to
not let him end up in a nursing home. She was able to abide by his wish, and he died peacefully
at home surrounded by his loving wife and daughters, but it took the support of all of us: their
children, grandchildren, nieces, nephews, cousins, second cousins, friends, volunteers,
community services, rehabilitative services, and paid help, to keep him at home and fulfill his
request.
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Given my background and personal experiences, I began to understand the enormous
burden on caregivers, seeing what my grandmother and others went through. The important role
that families and communities can play in supporting caregivers became clear. This was
significant. It certainly changed and enhanced my practice as an occupational therapist, but it is
also what drew me to want to contribute on a different level; it is what drew me to the
Department of Behavioral Science and Community Health, Public Health Ph.D. Program,
specifically the caregiving research of Dr. Young and Dr. Lutz.
My experience will influence my research, but I believe that the knowledge I gained, both
through my family experiences and my practice as an occupational therapist, will help me to
interpret information effectively. Awareness of my biases will help me to look beyond initial
interpretations and see things from a different perspective. Obviously, I am unable to completely
set aside my lens, but I believe I will see more clearly and can help caregivers by using it to
guide me.
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CHAPTER 2
LITERATURE REVIEW
Prevalence for MCI is estimated to be 15-25% of the older adult population, more than
three times the prevalence of dementia, with a 31% annual conversion rate to dementia, and a 6-
year conversion rate of 60-80% (Bruscoli & Lovestone, 2004; Gerstenecker & Mast, 2014;
Plassman et al., 2008). Petersen (2004) states that MCI is a syndrome characterized by cognitive
deficits in the context of normal daily functioning, meaning that people with MCI are usually
able to complete activities of daily living (ADL), but have difficulty with higher level executive
functions and IADL. Caregivers, often family and friends, are needed to care for and support
people with MCI (Blieszner & Roberto, 2010; Seeher et al., 2013). As previously mentioned,
being a caregiver for a person with MCI is associated with poor clinical outcomes such as
depression, feelings of burdened, and increased cortisol levels (Blieszner & Roberto, 2010;
Garand et al., 2005; Paradise et al., 2014; Savla et al., 2013, 2011; Seeher et al., 2013; Springate
& Tremont, 2012).
Cognitive-based interventions for people with MCI have resulted in positive cognitive
and functional improvements. Evidence related to the effect of these improvements on family
caregiver outcomes has not been investigated. Typically, intervention effectiveness is evaluated
related to outcomes for the person targeted. However, no studies have assessed whether these
interventions might also impact the caregiver.
The stress process model has been successfully applied to other caregiving situations,
such as dementia (Pearlin, Mullan, Semple, & Skaff, 1990; Seeher et al., 2013; Sun & Hodge,
2014) and has also been utilized with MCI caregiving (Blieszner & Roberto, 2010; Hayashi et
al., 2013; Lu et al., 2007; Roberto, McCann, & Blieszner, 2013; Savla et al., 2011; Seeher et al.,
2013). The framework of the stress process model postulates that the onset and progression of
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disease and disability are stressful for the caregiver, with resulting impacts on health and well-
being (Pearlin et al., 1990; Schulz & Sherwood, 2008). When following this framework it is
expected that if the person with MCI exhibits cognitive and functional improvements, the family
caregiver may benefit as well.
The purpose of this chapter is to review the existing literature related to MCI
interventions, MCI caregivers, and to evaluate the use of the stress process model with MCI
caregivers. This review provides a foundation for a qualitative study using grounded theory to
evaluate the impact of a memory enhancement program for people with mild cognitive
impairments on family caregiver outcomes. An overview of MCI and the functional limitations
associated with the condition will be included to provide a context for caregiving for a person
with MCI.
Mild Cognitive Impairment Diagnosis
Definitions of MCI have varied in the literature for years. Recently, Gerstenecker and
Mast (2014) described cognitive decline without impairment of daily function as a predementia
phase. A description of symptoms of the progression of cognitive decline has been outlined by
Langa and Levine (2014). Subtypes of MCI are described in the literature; recently Petersen et
al. (2014) clarified the delineation of the subtypes identifying two major categories: amnestic and
nonamnestic. Each is further divided into single and multidomain types, amnesic MCI (aMCI),
where memory is the predominant issue (Petersen & Morris, 2005), and non-amnesitic MCI
(naMCI), which is characterized as cognitive impairment other than memory (Sachs-Ericsson &
Blazer, 2015). MCI subtypes are also described by believed etiology, for example MCI-
Alzheimer’s disease (AD), vascular MCI, and MCI-Lewy body dementia (LBD) (Sachs-Ericsson
& Blazer, 2015). These subtypes have not been consistently recognized in the literature, and the
concept of MCI continues to evolve, with modifications and clarifications published frequently.
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Petersen et al. (2014) acknowledge that “subtypes of MCI are still far from being accurate” (p.
217).
Because of the variability in diagnostic criteria and the application of such criteria in
research (Gerstenecker & Mast, 2014; Petersen et al., 2013), there has been an effort to establish
clearer diagnostic guidelines. Currently, recommendations from the National Institute on Aging-
Alzheimer’s Association (NIA-AA) are the most widely accepted criteria for diagnosing MCI.
There are six criteria put forth by Albert et al. (2011) as part of the NIA-AA workgroup: 1)
change in cognition reported by the patient, informant knowledgeable about the patient, or a
clinician; 2) objective evidence of impairment in one or more cognitive domains (e.g. memory,
executive function, attention); 3) preservation of independence with most functional activities,
with increased potential for errors and decreased efficiency with ADL and IADL; 4) not
demented; 5) evidence of long-term decline when possible.
The NIA-AA also put forth suggestions for potential inclusion of biomarker and imaging
in the MCI diagnosis, but note that biomarkers and imaging have not been validated for MCI,
there is a call on researchers to investigate this further (Albert et al., 2011). Petersen et al.
(2013), following the NIA-AA guidelines, investigated the biomarker and imaging criteria. The
researchers reported (Petersen et al., 2013) that the criteria apply to most people with MCI, but a
significant proportion of the study participants had conflicting biomarkers. Further research is
needed before the imaging and biomarker criteria can be universally applied to diagnose MCI
(Petersen et al., 2013).
Also in 2013, the American Psychiatric Association (APA) added a new diagnosis to the
Diagnostic Statistical Manual-5 (DSM-5), that of mild neurocognitive disorder (mNCD) (Sachs-
Ericsson & Blazer, 2015). The diagnosis of mNCD is characterized by a decline in cognitive
24
function from a previous level and stipulates that the person needs accommodations and/or
compensatory strategies to perform ADL, but remains independent. The APA notes that there
are still no standard neuropsychological tests to use in the diagnosis of mNCD, but as biomarkers
are identified, specific etiologies will be distinguished (Sachs-Ericsson & Blazer, 2015).
Distinctions between MCI and mNCD are that mNCD includes a wide variety of "entities"
including acquired impairments that can be "transient, static, or even reversible," though the
authors note that our knowledge about mNCD is based in MCI research (Sachs-Ericsson &
Blazer, 2015, p. 5).
MCI Functional Limitations
The diagnosis of MCI specifies that general preservation of independence with functional
activities is present, though there is increased potential for errors and decreased efficiency with
ADL and IADL (Albert et al., 2011; Petersen et al., 2014). The use of IADL limitation as a
diagnostic criteria for MCI has been supported by research comparing older adult individuals
with MCI to healthy controls (Brown, Devanand, Liu, & Caccappolo, 2011; Burton, Strauss,
Bunce, Hunter, & Hultsch, 2009). Also, a systematic review by Jekel et al. (2015) reported that,
of 37 studies included in the review, 35 reported impairments with IADL in individuals with
MCI compared to controls without cognitive impairments. Generally, management of finances,
medication, shopping, and technology are impaired, as well as the ability to drive, keep
appointments, and find one’s way, especially in unfamiliar places (Belchior, Korner-Bitensky,
Holmes, & Robert, 2015; Jekel et al., 2015). Individuals with MCI demonstrate the need for
more time to complete IADL tasks and are less accurate than controls (Jekel et al., 2015).
Though some differences have been found in which different IADL were impacted within
different MCI subtypes (Jekel et al., 2015), due to the subtle nature of MCI and individual
variences, these differences cannot confidently be discerned at this time.
25
Ahn et al. (2009) investigated which IADL are affected in MCI and found that
individuals with MCI had significantly more impairment when “using the telephone, preparing
meals, taking medication, managing belongings, keeping appointments, talking about recent
events, and leisure/hobbies” than the control group of older adults (p. 183). Brown et al. (2011)
found shopping, medication management, and checkbook balancing to be specific issues,
findings that were supported in a recent pilot study by Ciro, Anderson, Hershey, Prodan, and
Holm (2015). Ciro et al. (2015) also found that indicators of independence such as playing
bingo, mailing bills, using the oven, and using the stove were significantly different in people
with aMCI than in the control group. The activites identified have a high memory and executive
functioning component which was supported in a study by Reppermund et al. (2013). Their
findings indicated that IADL capabilities, especialy activities with high cognitive demand, are
significantly impacted in people with MCI compared to cognitively normal individuals. This
was reiterated by Jekel et al. (2015) who conclude that activities which require “higher cognitive
processes” are regularly impacted (p. 17).
Though the criteria for MCI specify that general preservation of functional activities is
maintained, Rodríguez-Bailón, Montoro-Membila, Garcia-Morán, Arnedo-Montoro, & Funes
Molina (2015) challenged this notion. In a study that explored cognitive abilities for both basic
ADL (BADL) and IADL tasks among people with dementia, MCI, and control participants, the
authors found that BADL issues are present in people with MCI due to impairments with
cognitive abilities such as problem solving (Rodríguez-Bailón et al., 2015). This is further
illustrated by their findings that other cognitive abilities, such as task memory schema, were not
impaired for BADL or IADL. The authors suggest that basing criteria on types of cognitive
26
abilities rather than functional impairments may be a more accurate way to establish an MCI
diagnosis (Rodríguez-Bailón et al., 2015).
MCI Interventions
Pharmacological interventions have proven ineffective in treating MCI. There are
currently no United States Food and Drug Administration (FDA) approved medications for MCI
(Langa & Levine, 2014; Li et al., 2011). Trials have evaluated the effectiveness of
cholinesterase inhibitors, ginkgo biloba, and testosterone supplementation in men, but no
significant effects have been found (Langa & Levine, 2014; Li et al., 2011). Due to the absence
of pharmacological interventions, this review will focus on non-pharmacological interventions
for MCI.
Cognitive interventions in the form of cognitive training, cognitive stimulation, or
cognitive rehabilitation programs have proliferated due to the lack of pharmacological options
for MCI. Definitions between different types of interventions have been clarified by Aguirre,
Woods, Spector, and Orrell (2013). They define cognitive stimulation as “engagement in a range
of activities and discussions (usually in a group) aimed at general enhancement of cognitive and
social functioning,” while, cognitive training is defined as, “guided practice on a set of standard
tasks designed to reflect particular cognitive functions with a range of difficulty levels to suit the
individual’s level of ability,” and finally, cognitive rehabilitation is defined as, “an
individualized approach where personally relevant goals are identified, and the therapist works
with the person and his/her family to devise strategies to address these” (Aguirre, Woods,
Spector, & Orrell, 2013, p. 254). These interventions are designed to improve cognitive
functioning and delay the onset or progression of dementia, and some also aim to improve
quality of life (QOL), ADL performance, and emotional disturbances (Li et al., 2011).
27
Several recent reviews have investigated the efficacy of cognitive interventions in people
with MCI. In 2011, Li et al. conducted a meta-analysis of seventeen clinical studies of cognitive
interventions for people with MCI. The results indicated that improvements in overall cognition
were found, with additional small benefits including episodic memory, semantic memory,
executive functioning, visuo-spatial ability, attention/processing speed, and Mini Mental State
Exam score (Li et al., 2011). Thanks to these cognitive interventions, functional abilities were
reported to significantly improve, and improvements were also reported in self-rated anxiety. In
addition, QOL and depression were found to improve, though with smaller effects (Li et al.,
2011).
Reijnders et al. (2013) performed a systematic review to evaluate the effectiveness of
cognitive interventions in both healthy older adults and people with MCI. Thirty-five articles
were included in the final analysis. The results showed that cognitive functioning in areas of
memory performance, executive functioning, processing speed, attention, fluid intelligence, and
subjective cognitive performance all improved as a result of cognitive intervention, supporting
the findings of Li et al. (2011) (Reijnders et al., 2013).
Most recently Horr et al. (2015) performed a systematic review of interventions designed
to improve cognition, quality of life, disruptive behaviors, and to slow the progression to
dementia of people with MCI. This review included cognitive interventions, but also included
physical activity and socialization interventions, all with the same overall purpose, to delay
decline in cognition and function (Horr et al., 2015). An additional focus of this review was an
evaluation of the strengths and limitations of randomized controlled trials. The authors evaluated
23 randomized controlled trials of non-pharmacological interventions for MCI. The majority of
28
the 14 studies reviewed were focused on cognitive interventions. Eight studies focused on
physical activity, and one on socialization.
Among the cognitive intervention studies, executive function, working memory, delayed
recall, and global cognition were reported to have significantly improved after intervention (Horr
et al., 2015), although two of the studies did not find any difference between the intervention and
control groups. There were no consistent improvements found in physical activity studies, while
one study reported improvement with executive function, but not in memory (Horr et al., 2015).
Two other physical activity studies reported the opposite, that memory improved, but executive
function did not (Horr et al., 2015). The one socialization study reported improvement on
cognition and functional outcomes (Horr et al., 2015).
Both Li et al. (2011) and Reijnders et al. (2013) reported difficulty comparing different
intervention studies, due to diversity among interventions and outcome measures. This is
reiterated in the systematic review by Horr et al. (2015) which found issues with
operationalization of definitions, outcome measures, stage of disease, accounting for risk factors,
and sample sizes. Horr et al. (2015) discuss the difficulty of comparing studies of people with
MCI due to the evolution of the definition of MCI and inconsistent use of subtypes.
Some studies have begun to use biomarkers for more accurate diagnosis; however, these
tests are not widely used and inaccuracies in diagnosis are still common. Other studies utilize
cognitive tests to determine the level of involvement, but the same tests are not used consistently
across studies, making it difficult to know what variations exist in level of impairment and stage
of the disease (Horr et al., 2015). Cognitive and functional outcome measuring differences make
it difficult to compare outcomes between studies (Horr et al., 2015; Li et al., 2011; Reijnders et
al., 2013). Horr et al. (2015) notes that there are “treatable etiologies” that can influence the rate
29
of progression of MCI that are poorly accounted for in some of the studies reviewed (p. 9). For
example, lifestyle factors, medications, and co-morbidities alone can impact cognition, especially
factors such as “smoking, nutrition, alcohol use, head trauma, hypertension, diabetes, heart
failure and sleep disorder” (Horr et al., 2015, p. 9).
Summary
Overall, studies of non-pharmacological interventions for MCI have shown promising
results. Cognitive and functional improvements reported by the participants with MCI in these
studies may have an impact on the caregivers of these people. As noted previously, intervention
effectiveness to this point has solely focused on the person with MCI. One study by Moro et al.
(2012) investigated the effects of a cognitive stimulation program on people with the a-MCI
subtype and included anecdotal “clinical reports” from caregivers of people in the intervention.
They reported that some caregivers recognized the need to make time for themselves during the
week as a result of the program. It is important to note that no qualitative or quantitative
methods were employed with regards to the caregivers in this study. They only used anecdotal
information, as mentioned above. The next sections will focus on MCI caregiver research and
application of the stress process model.
MCI Caregivers
People caring for individuals with MCI do not always identify themselves as caregivers
(Dean & Wilcock, 2012). They often begin caregiving gradually, but due to the nature and
progression of MCI, they can become subject to long caregiving careers (Lu et al., 2007). Given
the conversion rates to Alzheimer’s among people with MCI, many MCI caregivers will
eventually become caregivers for people with AD. The current research on MCI caregivers as
reviewed here covers health, the MCI caregiving experience, and interventions for MCI
caregivers.
30
Health
Health effects on MCI caregivers have not been investigated as thoroughly as in other
caregiving populations like AD, but some differences from the general population have been
reported. MCI caregivers experience depression at rates significantly above that of the general
population (Blieszner & Roberto, 2010; Garand et al., 2005; Seeher et al., 2013; Springate &
Tremont, 2012). Clinically significant levels of burden, with rates ranging from 20-36% , are
often reported by MCI caregivers (Hayashi et al., 2013; Paradise et al., 2014; Springate &
Tremont, 2012). Social isolation is another issue commonly reported (de Vugt & Verhey, 2013;
Lu & Haase, 2009; Lu et al., 2007). Elevated cortisol levels have been found among MCI
caregivers, with implications for stress-related disease and mortality risk (Pinquart & Sorensen,
2007; Savla et al., 2013, 2011; Vitaliano et al., 2003). Given the associated negative health and
other outcomes, interventions for caregivers of people with MCI have been designed to help
ameliorate these issues.
Caregiver Experience
Two studies have looked at the experience of MCI caregiving among spousal caregivers.
Roberto, McCann, & Blieszner (2013) interviewed 40 MCI caregiving spouses and care
recipients over a four-year period. All couples experienced an initial period of transition in
coping with MCI where they made adjustments in their daily lives and interactions. Following
this adjustment period, four trajectories of care emerged depending on the extent of decline and
the spouse's response. The categories were: 1) adjusting to maintaining the partnership; 2)
changing from partner to manager; 3) changing from intertwined to parallel; 4) transitioning
from interdependency to dependency on others. The authors concluded that MCI affects role
identity and has consequences for the spousal relationship (Roberto et al., 2013). Lu & Haase
(2009) interviewed 10 MCI caregiving spouses to understand the experience of living with a
31
spouse diagnosed with MCI. Four major themes emerged: 1) putting the puzzle pieces together-
there really is something wrong; 2) a downward spiral into a world of silence; 3) consequences to
caregivers of living in a world of silence; and 4) taking charge of care. The authors concluded
that early intervention for the MCI dyad could help to minimize negative outcomes (Lu & Haase,
2009).
Caregiver Interventions
In a mixed methods study, Joosten-Weyn Banningh et al. (2013) investigated the effect of
a cognitive-behavioral therapy and memory rehabilitation intervention on caregiver sense of
competence, level of distress, and well-being among people with MCI and their significant
others. Statistically significant differences were not found between the treatment and the control
group as part of the quantitative analysis. Analysis of qualitative feedback about the intervention
from 70 caregivers revealed that caregivers valued the program, gained knowledge about MCI
and ways to manage it, gained insight into the current situation as well as insight for the future,
reported increased acceptance, improved their ability to cope, and felt a sense of relief (Joosten-
Weyn Banningh et al., 2013).
A pilot study by Lu, Haase, & Weaver (2014) investigated the acceptability, feasibility,
and potential benefits of a Daily Enhancement of Meaningful Activity (DEMA) intervention for
people with MCI and their spousal caregivers in 10 dyads. The goals of the intervention were to
work together to meet goals, maintain engagement in meaningful activity, and adapt to changes.
Positive trends in meaningful activity performance and maintenance of health-related outcomes
were found, though the results were not significant.
An intervention based on problem solving therapy for caregivers of people with MCI or
early dementia was investigated by Garand et al. (2014). The investigators targeted caregivers of
people with MCI and early dementia at a point early in their caregiving career. It was
32
hypothesized that this could be an “optimal phase” in which to prevent depression and anxiety
(Garand et al., 2014, p. 772). The findings suggested that the intervention kept depression levels
from increasing for caregivers of people with MCI and reduced depression levels in caregivers of
people with early dementia. In addition, levels of anxiety and negative problem orientation
decreased for both groups. The significance of these findings are that depression levels in the
treatment groups remained low or decreased over the next year, while depression in the control
group increased during the same period.
Summary
Investigations into the health of MCI caregivers tells us that their health is impacted as a
result of being a caregiver. Specifically, such care results in depression and elevated cortisol
levels, which can lead to other health issues. The experience of MCI caregivers has been
investigated, but only among spousal caregivers. As impairments become prominent and a
diagnosis is made, caregivers go through a period of transition which is followed by different
trajectories depending on decline and caregiver response. Interventions for caregivers have had
mixed results with regards to outcomes, but one study found that early interventions for
caregivers of people with MCI and early dementia resulted in reduced depression levels lasting
for up to one year.
Stress Process Model
A prominent theme in the literature was the stress process model. Pearlin et al. (1990)
developed the stress process model as a way to explain the relationship between the caregiving
situation, intrinsic and extrinsic factors, and caregiver outcomes. The stress process model has
been applied to AD and other dementia caregiving situations (Seeher et al., 2013; Sun & Hodge,
2014) and has also been utilized with MCI caregiving (Blieszner & Roberto, 2010; Hayashi et
al., 2013; Lu et al., 2007; Roberto et al., 2013; Savla et al., 2011; Seeher et al., 2013). The
33
model consists of four components that interact with each other: 1) background and context of
the stress process; 2) primary and secondary stressors; 3) mediating conditions; and 4) outcomes
(Pearlin et al., 1990).
In the stress process model, background and context include factors such as demographic
variables, caregiving history, and access to, availability of, and use of resources in the
community. According to Pearlin et al. (1990), stressors “are at the heart of the stress process”
and include “conditions, experiences, and activities that are problematic for people” (p. 586).
Primary stressors are seen as directly related to the needs of the care recipient in the stress
process model. The chronic nature of primary stressors in AD caregiving results in other
problems and “hardships” which are seen as secondary stressors, though just as important with
regards to potential impact on a caregiver (Pearlin et al., 1990, p. 587). Primary stressors include
cognitive status of the care recipient, problematic behaviors, level of vigilance, and amount of
care. Secondary stressors are further broken down into two types: role strains and intrapsychic
strains. Role strains relate to roles separate from the role of caregiver, while intrapsychic strain
relates to self-concept and individual characteristics (Pearlin et al., 1990; Seeher et al., 2013).
Coping and social support make up the mediating conditions component of the model.
Coping is seen by Pearlin et al. (1990) as having three functions: “management of the situation
giving rise to stress; management of the meaning of the situation such that its threat is reduced;
and management of the stress symptoms that result from the situation” (p. 590). Social support
consists of instrumental and expressive support, where instrumental support is tangible, and
expressive support is related to the perception of support from others. Outcomes in the model
are focused on physical and mental health. Interrelatedness and dynamic interaction among the
four components of the model are important characteristics of the stress process. When applying
34
the stress process model, the onset and progression of disease and disability are seen as stressful
for the caregiver, with resulting impacts on health and well-being (Pearlin et al., 1990; Schulz &
Sherwood, 2008). If the care recipient were to improve, then the family caregiver might benefit
as well. Evidence for the fit of the stress process model for use with MCI caregivers will be
reviewed.
Caregiver education and relational deprivation were significantly related to caregiver
depressed mood in a cross sectional study (Lu et al., 2007) with the purpose of estimating the
prevalence of depression among caregivers of people with MCI, and to identify variables
associated with symptoms of depression using the stress process model. More education, a
background characteristic, was significantly related to less depressed mood among caregivers
(Lu et al., 2007). Relational deprivation, a primary stressor, was associated with depressed mood
(Lu et al., 2007). Other variables were not significantly related to depressed mood, but the cross-
sectional nature of the study may have been a limitation to application of the stress process
model, which was originally tested by Pearlin et al. (1990) longitudinally.
A study by Blieszner and Roberto (2010) utilized the stress process model as a
conceptual framework to examine how caregivers manage behavioral changes in MCI, and, in
another cross sectional study, how MCI impacts psychological well-being. A stepwise analysis
was utilized to assess the elements of the stress process model. The authors found that 57% of
the variance in depressive symptoms were accounted for by eight variables in the model. The
demographic characteristics of poor health and decreased religiosity, a stressor related to
frustration with care recipient symptoms, and intrapsychic strain operationalized by reduced
environmental mastery and greater perceived burden, were associated with more depressive
symptoms. In addition, the mediating conditions of more frequent coping and having more
35
social support were associated with increased depressive symptoms. The authors acknowledged
that this finding was counterintuitive and explained that, “in the context of an ambiguous
situation such as MCI, greater attempts to make sense of the condition yield distress rather than
positive feelings” (Blieszner & Roberto, 2010, p. 20). They also explained that the Social
Provisions Scale, used to evaluate social support, may not be relevant for caregivers of people
with MCI. The contextual factor of better knowledge about dementia was associated with fewer
depressive symptoms (Blieszner & Roberto, 2010).
A systematic review by Seeher et al. (2013) evaluated the evidence for use of the stress
process model among MCI caregivers. Some evidence was found to support background and
contextual variables such as symptom duration, younger age, and lower education (Seeher et al.,
2013). In addition evidence supported primary stressors, such as behavioral symptoms, ADL
assistance, subjective burden, and relational deprivation (Seeher et al., 2013). Only one study,
by Blieszner & Roberto, (2010), as mentioned previously, evaluated secondary stressors or
mediators of stress, making it difficult to draw conclusions about application of those variables.
Hayashi et al. (2013), in a cross-sectional study, sought to evaluate the presence of
caregiver burden in MCI caregivers in Japan. A secondary focus of the study was to evaluate the
relationship of background variables and primary stressors to caregiver burden, and clarify
associations between caregiver burden and various care recipient characteristics (Hayashi et al.,
2013). Behavioral characteristics were associated with caregiver burden and strain, duration of
disease was associated with strain, but dyad relationship and care recipient ADL status were not
associated with burden.
An additional study by Savla et al. (2011) did not evaluate the fit of the stress process
model, but used elements of the stress process model as a framework to evaluate psychological
36
well-being and cortisol levels of caregivers in response to daily interactions with the care
recipient. Caregivers used a daily diary and provided cortisol samples throughout the day. The
authors found that there were fluctuations in behavior during different times of day that impacted
the caregivers’ assessment of their day (Savla et al., 2011). Days of higher reported stress were
associated with increased cortisol levels the following day (Savla, et al, 2011). The impact of
stress on these caregivers, as demonstrated through cortisol samples, indicates the need for
effective interventions.
Conclusion
There are a growing number of people with MCI who need an increased number of
caregivers. MCI caregiving has been found to impact the health and well-being of the caregiver.
The few studies of MCI caregivers that incorporate the stress process model tell us that
background characteristics of the stress process model influence the stress process of MCI
caregivers. These include caregiver education, age, and symptom duration in the care recipient.
In addition, stressors and strains, including relational deprivation, care recipient behavioral
symptoms, ADL assistance, subjective burden and intrapsychic strain, also have implications for
MCI caregiver stress, based on the evidence.
A review of the literature shows that interventions for MCI caregivers have not
demonstrated significant positive outcomes, except for one study that found an early intervention
program for MCI caregivers resulted in decreased depression levels lasting for one year post
intervention. Since medication interventions are not effective in treating MCI, cognitive
intervention programs have been utilized to increase cognition, functional status, and well-being.
The lack of attention to program availability and the impact of these programs on the caregiver is
apparent. No studies have looked at the impact of community programs intended for the person
with MCI on MCI caregivers.
37
CHAPTER 3
METHODS
Design and Theoretical Framework
A grounded theory approach was utilized in this study. Grounded theory is useful for
areas of inquiry that lack foundational research or when available models were developed and
tested on populations other than the one of interest (Creswell, 2013). Sensitizing concepts of the
stress process model were used to inform the research questions, interview guide, coding, and
analysis for this research due to its prominence in the MCI caregiving literature (Bowen, 2008;
Charmaz, 2006). Concepts from the stress process model were used from a “theoretical
sensitivity” perspective, but not to impose a framework on this grounded theory approach (Elliott
& Higgings, 2012, p. 8). A symbolic interactionism perspective was applied to focus on
understanding how the participants viewed their individual experience with caregiving and the
Memory Enhancement Program (MEP), a community based cognitive intervention program
(Charmaz, 2006). This approach allows for an interpretive portrayal of the participants’
experience from interview data that goes beyond labeling and ordering the data into categories,
resulting in a conceptual framework that will serve as a foundation for future inquiry (Charmaz,
2006; Sandelowski & Barroso, 2003). Findings provide insight into the needs of this
understudied population that will directly impact those diagnosed with MCI and their caregivers.
Surveys were utilized to gather demographic information about the overall population that the
sample was drawn from and aided in selecting participants for maximum variation.
Sampling
Participants consist of 20 dyads, MEP attendees and their caregivers, recruited via
convenience sampling methods for screening purposes through existing participants in the MEP.
Survey information from caregivers of MEP participants was utilized to find diverse participants
38
with key insights into the phenomenon of interest, so that rich information could be obtained
(Abrams, 2010). Specifically, caregivers were selected for diversity with regards to length of
time the care recipient participated in the MEP and those with high vs. low scores on surveys for
depression, strain, quality of life, and health. According to a study by Guest, Bunce, and
Johnson (2006), the majority of the findings can be obtained within 6 interviews, with saturation
occurring within 12 interviews. While Creswell (2013) recommends 20-30 interviews for
saturation, the number of participants for this study was determined by the number of caregivers
available for interviews.
Maximum variation purposive sampling was initially employed to obtain diverse
participants from different programs, which were located in neighborhoods with varying socio-
economic conditions. Initially, sampling was purposive due to the limited number of participants
and the need for individuals with certain characteristics, willingness to participate, and
willingness to reflect on their experience, but due to dropouts a combination of purposive and
convenience sampling was utilized (Richards & Morse, 2013). The inclusion criteria was that
caregivers must be over the age of 18, English speaking, and the primary caregiver for a person
with MCI who is currently participating in the MEP. Also, both the caregiver and the care
recipient had to agree to participate in the study, documented by informed consent. As purposive
sampling progressed, eight caregivers contacted for an interview were unavailable due to illness,
lack of time due to work, or moving away for the summer months. As a result theoretical
sampling could not be utilized. Figure 3-1 outlines the process for sampling.
39
Figure 3-1. Sampling process
40
Data Collection
The Institutional Review Board of the University of Florida approved this research.
Informed consent was obtained from both members of the dyad before the interview. Though
only caregivers were surveyed and completed interviews, informed consent was required from
the care recipient because the caregiver would be sharing demographic, health, and other
information about the care recipient. An informal presentation during normal program hours
explaining the study and inviting caregivers to participate was conducted at each of the six MEP
sites. Following the presentation, informed consent forms (Appendix A and B) and surveys
(Appendix C) were obtained from willing dyads, and others were sent home to caregivers of
remaining program participants. Potential study participants were also able to take home the
informed consent form for further review. Surveys were sent out to 47 potential participants. Of
these, 14 were handed out directly to caregivers and the other 33 were sent home with MEP
participants. The primary and co-investigators provided contact information to answer any
questions participants had about the survey questions.
The surveys consisted of demographic information about the MEP participant and the
caregiver as well as several short screening assessment tools for caregivers of MEP participants.
Completion time was estimated to be 15 minutes. For the caregiver, information gathered
included: age, gender, race/ethnicity, marital status, education, employment status, household
income, relationship to the care recipient, number of additional co-caregivers, and number of
years caregiving for the MEP participant. Demographic characteristics of the care recipient
included age, gender, race/ethnicity, marital status, education, household income, medical
comorbidities, and length of time participating in the MEP (AA, 2014).
One key issue that can impact the health of MCI caregivers is that of strain, as recognized
in the literature (Blieszner & Roberto, 2010; Roberto et al., 2013; Savla et al., 2013, 2011). It is
41
important to include a measure of strain as a selection criteria for participants. Depression is also
commonly cited in the literature among MCI caregivers (Blieszner & Roberto, 2010; Lu et al.,
2007; Seeher et al., 2013; Springate & Tremont, 2012), with poor health being a contributing
factor (Blieszner & Roberto, 2010). Thus measures of depression and health were included. Due
to the importance, not only of saving lives and preventing disease and disability, but also of
improving the quality of life, a quality of life measure was included to the research (Centers for
Disease Control and Prevention, 2011). Additional surveys for the caregiver included The
Modified Caregiver Strain Index (MCSI), Center for Epidemiologic Studies Depression Scale-
Revised (CESD-R), Quality of Life-Alzheimer’s Disease (QOL-AD) scale, and Short Form-36
(SF-36). Recent Montreal Cognitive Assessment (MoCA) scores for the MEP participant were
also requested. Each measure is covered in more depth below.
Surveys were returned within a two week time period. Informed consent was verified for
each participant in the dyad and survey information was compiled and entered into a spreadsheet.
Participants for the interviews were selected for diversity based on length of time in the program
and high vs. low levels of strain, depression, quality of life, and health reported in the surveys so
that the findings would represent different viewpoints. To avoid selection bias, the primary and
co-investigators independently selected participants based on the above factors. Selected
participants were contacted and asked to participate in interviews.
Five participants with a score of 15 or higher on the CESD-R were contacted by phone to
assess risk of suicide and advised to contact their primary care physician regarding depression
symptoms. All participants contacted denied suicidal thoughts or intention to commit suicide.
Each of these participants was also provided with information about community services that are
42
available in the local area; for example the caregiver support services through the St. Johns
County Council on Aging.
Audio-recorded interviews were conducted at the homes of the participants at a time that
was convenient to each study participant. An interview guide was utilized with key points to
follow, and with open-ended questions (Table 3-1). However, participant responses drove the
direction of the interview to ensure appropriate breadth and depth (Young, Lutz, Creasy, Cox, &
Martz, 2014). Interview topics included caregiver background and current context, sources of
stress, coping and social support, experience with MEP, and impact of MEP on the caregiving
experience. Interview topics were based on sensitizing concepts of the stress process model and
other concepts based in clinical experience and interactions with caregivers (Bowen, 2008). All
interviews lasted approximately 60-75 minutes. The transcripts were transcribed verbatim by a
professional transcriptionist and verified by the interviewer.
In an effort to capture the “real-world” experience of study participants, joint interviews
were offered so that the dyads could support, contradict, or add to the responses of the caregiver
for richer data (Taylor & de Vocht, 2011). However, all caregivers chose to be interviewed
alone. Since the intention of this study was to explore the perspective of the caregiver, this was
not viewed as a limitation. Taylor and de Vocht (2011) explain that when more than one person
participates in an interview the behavior and responses may be different than if they are
interviewed alone. In addition, people in a close relationship may be more forthcoming about
their thoughts, feelings, and beliefs, when interviewed alone (Taylor & de Vocht, 2011).
Measures
The Modified Caregiver Strain Index (MCSI) was utilized as a measure of caregiver
strain. This is a measure specific to caregiver strain that is easy to administer, and both the MCSI
and its precursor, the Caregiver Strain Index (CSI), have been widely used in research with
43
caregivers of people with dementia, as well as other diagnoses (Bradshaw, Goldberg, Schneider,
& Harwood, 2013; Diwan, Hougham, & Sachs, 2004; Hoskins, Coleman, & McNeely, 2005;
Onega, 2008). Strain is defined by Thornton and Travis (2003) as “the caregiver’s perception of
enduring problems, or an altered state of well-being” (p. S127). It is noted that the terms strain,
stress, and burden are often used interchangeably, but burden and stress are viewed as forces that
create strain, resulting in long-lasting changes to the person (Thornton & Travis, 2003).
Table 3-1. Interview guide
Introduction Thank you for agreeing to meet with me today. The purpose of this
research study is to describe caregivers’ experiences with the Memory
Enhancement Program to identify how the program may impact
caregiving.
Questions Tell me about how you came to be a caregiver for [care recipient’s
name]. (Probe for history of relationship, strength of relationship,
history of problems); (Probe for MCI onset, progression, diagnosis).
What assistance do you provide to [care recipient’s name]? (Probe for
ADL and IADL and level of assistance.)
Do you have any additional assistance? (Probe for other family
members or friends that help in the care of care recipient).
What has helped you manage being a caregiver for [care recipient’s
name]? (Probe for use of resources in the community, both formal
and informal.)
How has [care recipient’s name] memory impairments impacted your
ability to do what you need to do (as in work or other activities,
health, quality of life)?
What causes you stress?
Tell me about your experience with the Memory Enhancement
Program. (Probe for referral and integration into routine.)
How has [care recipient’s name] participation in the Memory
Enhancement Program affected you? (Probe for effect on caregiving
role and experience.)
Is there anything else the Memory Enhancement Program could do
that would help you as a caregiver?
Closing Thank you for participating in this interview. I appreciate your time
and willingness to speak with me. If you have any questions about the
study, please let me know.
The MCSI evaluates four domains of caregiver strain: financial, physical, psychological,
and social and personal. The MCSI is reported to have good internal reliability (α=0.90) and
44
correlates well with associated variables (Thornton & Travis, 2003). The MCSI is a 13-item
survey. Each item is scored based on three possible responses: yes, on a regular basis=2; yes,
sometimes=1; and no=0. The points are added with a possible range from 0 to 26, with 0
indicating no strain and 26 indicating a high amount of strain. Though many studies assess the
construct of burden among caregivers, it is noted that caregivers prefer the term strain
(Abendroth, Lutz, & Young, 2012).
Caregiver depression was assessed using the Center for Epidemiologic Studies
Depression Scale-Revised (CESD-R) originally developed by Radloff (1977) and revised by
Eaton, Muntaner, Smith, Tien, and Ybarra (2004). It is a 20-item scale assessing the frequency
of depressive symptoms over the previous 2 weeks. The precursor to the CESD-R, the Center
for Epidemiologic Studies Depression Scale (CESD), was found to be the most frequently used
measure to assess depression in research of caregivers for people with dementia (Jones, Edwards,
& Hounsome, 2012). It has been used in recent studies such caregivers with good internal
reliability (α ranging from 0.82 to 0.89) and was also found to be sensitive to change over time
(Hilgeman et al., 2009; Logsdon, Pike, Korte, & Goehring, 2014; Simpson & Carter, 2013).
Scores higher than 15 indicate risk for clinical depression.
There were many quality of life measures to choose from. This project utilized the
Quality of Life-Alzheimer’s Disease (QOL-AD) scale. Though this scale was developed for use
with people with dementia, use of this scale as an assessment of caregiver quality of life has been
documented (Bartfay & Bartfay, 2013; Logsdon et al., 2014). This is the scale currently used by
the program to assess quality of life among the participants. For process and efficiency, it is the
best choice for this project. The QOL-AD is a 13-item questionnaire developed to reflect four
domains of quality of life, and has been found to demonstrate both content and construct validity,
45
with α values ranging from 0.83-0.90 (Logsdon, Gibbons, McCurry, & Teri, 2002). Each item is
scored as: poor=1; fair=2; good=3; and excellent=4. The total possible score ranges from 13 to
52, with a higher score equating to better quality of life.
The Short Form-36 (SF-36) is a widely used measure of subjective health (Löckenhoff,
Duberstein, Friedman, & Costa, 2011; Ware, Snow, Kosinski, & Gandek, 1993). It includes four
mental health scales and four physical health scales. These scales have been used in research
with caregivers of people with dementia (Argimon, Limon, Vila, & Cabezas, 2004; Löckenhoff
et al., 2011; Richardson et al., 2013). The Short Form-36 was selected due to the ease of
administration and has been found to detect changes over time. The SF-36 is a 36-item survey
found to have an adequate alpha (α=0.90) in a study designed to validate its use among adult
daughter former caregivers of people with Alzheimer’s disease (Berg-Weger, 2003). Summary
scores from each section are combined for a total score, with a higher score equating to higher
self-reported health.
The Montreal Cognitive Assessment (MoCA) was used in this study as a measure of
cognitive function in the MEP participants (Nasreddine et al., 2005). The MoCA is administered
to all participants in the MEP program upon admission and on a tri-annual basis. The most
recent score was obtained. Previous research completed by Nasreddine et al. (2005), compared
the MoCA with the Mini Mental Skills Evaluation (MMSE) and found that the MoCA provided
a higher level of sensitivity and specificity. Thus, the MoCA is able to detect whether someone
has a deficit in any of the items assessed in the evaluation and has less error in finding deficits
(Nasreddine et al., 2005). The total possible score is 30 points; a score of 26 or above is
considered normal (Nasreddine et al., 2005).
46
Data Analysis
Interview data were coded and analyzed using constant comparative and constructivist
methods (Glaser & Strauss, 1967; Strauss & Corbin, 1990; Charmaz, 2006). This analysis
process is congruent with textual data in grounded theory studies (Strauss & Corbin, 1990).
NVivo (QSR International, Melbourne, Australia) qualitative data management software was
used to aid in analyzing and managing the data. Line by line open coding was conducted
initially with codes remaining provisional so that they could be compared and adjusted to best fit
the data (Charmaz, 2006). As concepts were identified, interview questions were adjusted to
clarify and illuminate these emerging concepts. For example, in one early interview, a caregiver
talked about the concept of constant vigilance as a stressor in the caregiving situation. Further
exploration and questioning of other caregivers helped to more fully explain the impact and
breadth of the concept.
As themes and categories developed from the data, constant comparison and verification
through continued participant interviews substantiated the emerging framework. An iterative
process was used, meaning that as new codes and categories emerged from the data, previously
coded interviews were reviewed again to search for congruence with the developing framework
(Glaser & Strauss, 1967; Strauss & Corbin, 1990). Categories and sub-categories were
developed, and quotes with rich description were selected to clarify concepts and linkages in the
developing theoretical framework (Charmaz, 2006).
The research team met on a weekly basis to discuss the ongoing analysis. Detailed field
notes, audit memos, and analysis memos were kept to document the data and analysis trail and
provide for credibility of the methods employed (Charmaz, 2006; Strauss & Corbin, 1990). In
addition, coding results and categories were brought to a data analysis group, composed of
experts in the field of qualitative research as well as rehabilitation, public health, and nursing
47
professionals. Feedback from the group helped to develop and refine the emerging themes and
conceptual framework. The findings were compared to existing literature, other theoretical
perspectives, and survey data from interview participants to add credibility and depth to the
findings (Ma & Norwich, 2007).
Scientific Rigor
Scientific rigor and integrity was maximized by following the criteria proposed by Guba
& Lincoln (1989). Credibility is described as being parallel to the concept of internal validity
with a focus on ensuring accurate reflection of the participants’ reality (Guba & Lincoln, 1989).
This study used the techniques of prolonged engagement, peer debriefing, negative case analysis,
progressive subjectivity and member checking to ensure credibility (Guba & Lincoln, 1989).
Prolonged engagement was established via the researcher’s familiarity with the MEP program,
researcher attendance at MEP sessions, and through multiple contacts with caregivers. A benefit
of prolonged engagement afforded the researcher the opportunity to use later interviews to verify
and clarify findings of earlier interviews. Weekly research team meetings and presentations at
qualitative data analysis group meetings with faculty advisors and data analysis group members
served as peer debriefing and aided in identifying gaps in findings and offered varying
perspectives on data analysis. Negative case analysis was used to refine emerging codes and
themes by revisiting the data and through subsequent interviews with caregivers. Emerging
patterns and constructions were documented through the use of memos to demonstrate
progressive subjectivity. Member checks, where the emerging framework and findings of the
study were presented and verified with the participants, was also utilized through follow up
phone calls with caregivers.
Transferability in this study was enhanced by providing thick description and clearly
detailing the context and assumptions of the researcher (Guba & Lincoln, 1989). Transferability
48
corresponds to the concept of external validity. Use of thick description which gives context and
meaning to participants’ experiences (Denzin, 1989), enhances transferability allowing for
deeper understanding of the findings presented (Guba & Lincoln, 1989). Shenton (2004)
explains that the researcher cannot make transferability inferences, but readers can determine
whether the conclusions are transferable when detailed and thick description are provided by the
author.
Dependability is analogous to reliability and can be established by thorough
documentation with detailed description of data collection and analysis methods. An audit trail
was established through the use of memos that documented each stage of the research process
from start to finish. Thorough explanation of data collection and analysis, as well as theoretical
underpinnings, ensured dependability of the results (Guba & Lincoln, 1989).
Confirmability, which according to Guba & Lincoln (1989) is closely related to
dependability, relates to the idea of objectivity. Detailed methodological description is needed
so that the process of the research and findings can be tracked (Shenton, 2004). Confirmability
was enhanced through the use of detailed memos, an audit trail, and multiple researchers, as
described above, to ensure appropriate interpretations regarding the participants’ perspectives
and experiences (Guba & Lincoln, 1989).
49
CHAPTER 4
FINDINGS
The findings of this study offer insight into caregivers’ experiences with a community-
based cognitive intervention program for people with mild cognitive impairments and how
caregivers perceive the program impacts their caregiving experience. A framework to explain
participation in the program from the caregiver perspective was developed from the data.
Though the interviews focused on the MEP, questions were developed to help understand the
context of the caregiving situation and outcomes. Data from these questions bore a strong
resemblance to concepts analogous to the stress process model.
Though the intent of this grounded theory project was not to assess the fit of the stress
process model for MCI caregivers, as a true grounded theory approach was utilized, but the
emergence of the stress process model through systematic analysis of the data could not be
ignored. The data offered support for application of the stress process model by Pearlin et al.
(1990) to MCI caregivers. Each component of the stress process model was represented in the
data, but placement of the MEP in the model as a background and contextual construct is
inconsistent with the data from this study, due to the unique continuous delivery format of the
program.
Findings specifically related to the caregivers’ experiences’ with the MEP will be
discussed first; then data supporting the use of a modified version of the stress process model
will be presented. One caregiver discusses her situation, the impact it has on her, and how a
facilitator at a local class for caregivers helped her. This caregiver’s experience is presented here
as an introduction and overview to orient the reader to caregiving situations common in this
study:
I don’t have my freedom to go—like, I looked out and there were a bunch of
people playing tennis out there. Not my group, certainly, but some people…And
50
I could’ve just walked across the street and said, “Can I play?”…And I’m going
oh, well, you know [I can’t]. So, um, and then there are times when I say oh, god,
I really need to go to the store and pick up stuff, but I’m gonna have to wait till
Tuesday when so-and-so gets here. Um, so, to me, I have totally lost my freedom.
It’s a very stressful thing for me not to be able to do what I wanna do. I think I’ve
been slowed down a lot. I would love to go to the theaters. I would love to do a
lot of things like that. Um, so, I feel like I have—I feel very put upon, you know,
that I’ve lost a lot. And at this point in my life, I-I kinda hate that. (P8)
Study Participants
Twenty dyads participated in the survey part of the study. Of these, 12 caregivers participated in
interviews. The average age of the caregivers was 68.15 years with a standard deviation of 9.89
years. Care recipients had an average age of 81.7 years with a standard deviation of 7.665 years.
The majority of caregivers were women (90%), while the majority of care recipients were men
(65%). All participants self-identified themselves as white. Eighteen of the caregivers were
married and 13 of the care recipients were married. Both groups had a median education of a
Bachelor’s degree and a median household income of $50,001-$75,000.
The majority of the dyads were spouses (70%), four dyads were children caring for a
parent, and two caregivers were caring for a mother or father-in-law. The caregivers had been
caregiving for an average of 3.26 years. The care recipients had been participating in the MEP
for an average of 2.126 years. Mean and standard deviation scores for measures of caregiver
health, depression, quality of life, and strain, as well as mean and standard deviation scores for
care recipient cognitive impairment are reported in Table 4-1, along with other demographic
characteristics. Specific description of the interview sample is not included due to privacy
related concerns. The sample came from a small geographic area and a small community
program. Individual demographic information about each caregiver could compromise their
anonymity.
51
Table 4-1. Caregiver and care recipient demographics
Characteristic Caregiver (n = 20)
Mean (SD or Range)
or
Count
Care Recipient
(n = 20)
Age 68.15 (9.89) 81.7 (7.665)
Gender (Male:Female) 2:18 15:5
Race (White:Other) 20:0 20:0
Marital Status (Married: Not Married) 18:2 13:7
Education (Median) (Range) Bachelor’s degree
(High School
Graduate-
Doctoral Degree)
Bachelor’s degree
(High School
Graduate-
Doctoral Degree)
Employment Status
(Employed:Not Employed)
2:18 0:20
Household Income (Median) (Range) 50,001-75,000
(1 to >200,000)
50,001-75,000
(1 to >200,000)
Dyad type (Spouse:Child or In-law) 14:6 -
Time Caregiving 3.26 (1.99) -
SF36 PCS 50.32 (8.578) -
SF36 MCS 48.241 (13.848) -
CESD-R 10.5 (9.918) -
QOL 38.4 (8.611) -
MCSI 11.2 (6.526) -
Length of time in program - 2.126 (1.302)
MOCA - 14.563 (7.737)
Caregiver Experience with the MEP
The findings support the idea that caregivers are impacted by care recipient participation
in the MEP. Though caregivers spoke of benefits to the program, they were not always aware of
the impact on themselves personally. A few talked about benefits to other caregivers, especially
caregivers who they perceived were in situations worse than their own. Caregiver responses to
questions about the MEP offered insight into how people came to find and attend the program,
how caregivers perceived the ways the program impacted them, and feedback about how the
program could better meet the needs of both caregivers and program participants. A framework
for how people come to participate, maintain participation, or even why they would not
participate, is proposed, based on the data and knowledge about the program itself.
52
Participation Framework
Participation in the MEP can be explained by a continuum that starts before people begin
participating in the program. Prior to this time, caregivers and care recipients either do not
perceive a need for the program, or the barriers to attending the program outweigh the supports.
Program participation occurs because the caregivers and/or care recipients perceive a need for
the program and the supports for attending the program outweigh the barriers. During the
“continuing the program” phase the barriers have been overcome. Issues like transportation and
scheduling are not preventing engagement in the program. In this phase, similar themes such as
transportation and scheduling can still be issues and are considered hassles by caregivers. They
have a decreased role at this stage because they can still cause problems for the caregiver, but are
no longer barriers to participation. Also, there is a diminished role from these hassles due to the
increased role of the supports and benefits at this stage. Program participation ends when the
person is no longer eligible to attend due to disease progression and/or when the barriers to
attending the program outweigh the supports. Figure 4-1 illustrates the components of the
proposed framework.
Figure 4-1. Components of proposed framework
53
Finding and Attending the Program
Caregivers learned of the program via different methods. Some saw a blurb in the
community newspaper or newsletter. Others learned of the program through various community
resources. One caregiver reported getting a brochure at a caregiver class, another learned of the
program from a speaker at the country club she belongs to. In some cases the caregivers were
aware of the program through the newspaper or a brochure, but became more interested and
actually started attending the program when someone they knew participated or told them about
it. One caregiver explained:
I told her [friend] about it…and she ended up calling and coming over and
basically enrolling her husband in the program. And so we got back, and she said,
“[husband’s name]’s in this program.” And I said, “Oh, great,” you know, cuz
she—I kinda gave her the number and she kinda did the legwork. And she said,
“Yeah, we-we-we-we like it a lot,” so I said, “Well, good. I’ll get [MEP
Participant] to go. So we started, and then [another friend], uh, we mentioned it to
him I think, and, uh, and he started going. (P13)
This demonstrates how social support for the program helps to tip the scales and motivate
caregivers to begin participation.
Some caregivers reported that they did not see the need for the program initially or the
care recipient did not want to attend, a barrier for the caregiver in the framework. Sometimes
caregivers were able to overcome the barrier that the care recipient did not want to attend. One
caregiver said of her husband, “I thought it was a good thing for him. So I pushed him into it”
(P14). Another, caring for her mother-in-law, reported, “When I told her how much it was, she
was refusing…cause she’s not going and paying $10 an hour to something that she doesn’t really
need” (P12). Another caregiver reported that having a friend whose husband attended the
program helped her husband transition into the program. She explained, “It helped him, the fact
that [friend’s name] was coming here” (P1). Two caregivers used deception to get the care
recipient to participate in the MEP. Both of these deceptive practices related to financial
54
concerns on the part of the care recipient. One caregiver said of her husband, “I don't—I don't
tell him that he's paying—that I'm paying money for this memory thing because I'm afraid he'll
stop coming and I'm delighted that he's coming, so I just pay it” (P1).
Often, once over the initial barrier of starting the program, the benefits of the program
were felt more strongly by both the caregiver and the care recipient. The caregiver (P12), who
was a daughter-in-law said, “She went and tried it, and then enjoyed the women that were there.”
Another caregiver said, “And so—so, you know, he decided he’d try it, and pretty soon he liked
it” (P4). A third explained, “I mean this is a huge support. I didn't even realize it when we got
into it…and he loves it” (P4), illustrating the fact that sometimes caregivers did not realize the
need for the program and the amount of support they could receive from it. The fact that the
MEP participant liked the program also helped the caregiver like and value the program. For
example, one caregiver talked about the effect of the program on his wife:
She comes outta there laughin' and all bubbly. And she'll go home, and I'll say,
"Go take a nap now." She'll go in, get undressed, put her nightshirt on, get in the
bed. Twenty minutes later, she's up. "I can't sleep. Do you know what we did in
class?" And she'll remember some of it. You know? And—and—and it just—
she's so bubbly and excited about—I mean it makes you smile inside and
everything just to see her like that. And—and she'll ask me…"Do I have class
tomorrow? Do I have—" Cuz she doesn't know when it is but as soon as I tell
her, "Yeah"—like last night…She said, “Oh! Let’s go to bed!”… And she just
loves it. She does really well. (P6)
Once the dyads tried the program, all the caregivers interviewed became committed to the
program, as it offered them numerous supports, and any reluctance they had about attending
went away.
Impact of the Program on Caregivers
When asked about how the MEP impacts them as a caregiver, the responses were
positive, supporting the benefits component of the framework as a driver of continued
attendance. All caregivers perceived the MEP as having a positive impact. In the responses,
55
there were two distinct themes. One theme was caregiver benefits, which were perceived to
directly impact the caregiver. The other was care recipient benefits, where caregivers perceived a
benefit to themselves because they perceived that the MEP benefitted the care recipient. Within
each theme were distinct categories. Caregiver benefits included time for other responsibilities,
peace of mind, and social network. Care recipient benefits included stimulation, socialization,
and creating purpose.
Caregiver benefits
Caregivers perceived that the MEP did benefit them directly, even though those benefits
were consistently related back to care recipient benefits. Peace of mind was one important
benefit for the caregiver. Having peace of mind about the time the care recipient spent at the
MEP opened the door for caregivers to feel other, more direct, benefits. One caregiver
explained, “It's, uh, safe. And that’s one of the most important things, cuz you need—you don’t
just want them to be anywhere” (P12). Another stated:
I wouldn’t make him go, you know. I mean, if he didn’t wanna go, I would not
make him go cuz that wouldn’t be right at all. But he likes to intermingle with
these people. He thinks they’re all his buddies and all those girlfriends. He
just—he likes to go. (P3)
Peace of mind allowed the caregivers to perceive another direct benefit, time. The
majority of responses related to caregiver benefits centered on the time during which the care-
recipient was attending the MEP. Caregivers were able to use this time to take care of other
responsibilities that they were either not able to do with the care recipient or that they could do
more efficiently without the care recipient. This was perceived as very valuable time. One
caregiver stated, “That three or four hours is precious to me” (P3). Another caregiver clarified
this concept further:
I like, certainly, you know, having the time. Uh, well, I have to have the time. I
just have to… It’s time for me to—well, it’s time for me to take care of business.
56
Cuz I can’t even go in the office and pay bills and stuff when he’s home, um—
unless he’s sleeping. (P8)
This caregiver explained that time away from the care recipient to take care of business was seen
as necessary because of behavior issues. She stated:
I try not to take him shopping because he’s like a two-year-old in the store. He
wants to buy caulking, fix the toilet, and stuff like that. And then I have to turn
around and take it all back, or have a tantrum in the store, which doesn’t work
very well. (P8)
The commonality of behavior issues was reinforced by another caregiver, who said, “You can’t
just—you can’t go in with her, or you’ll be in there for hours because she has to look at
everything and wants to buy everything.” (P15)
Another use of the time was to have a break from their normal routine or to use that time
for other activities like volunteering or work. For example, one caregiver was able to maintain
one of her volunteer roles. She said, “I do still take care of the garden at the hospital. But that’s
when he’s in the memory enhancement class” (P3). Another, who was representative of multiple
caregivers, mentioned both the ability to do something else, but paired that concept with the idea
that the care recipient was also getting something out of it. She stated, “It allows me to work, and
it allows her to be social” (P 15). As stated previously, there were two themes, caregiver benefits
and care recipient benefits, but the two are inextricably linked. The majority of caregivers
described the benefits for both when asked how they were impacted. Caregivers don’t just want
time away, though they need it. They also need for the care recipient to be getting something out
of the program. This is illustrated by a quote from P12, who stated:
I think it helps. A, because it gets them out of the home. Because as a caregiver,
your concern is that they're sitting at home too much, not doing anything. And so
you want them to be active and doing things…So, um, it definitely, you know, it
gives you that break. (P12)
57
Another example of this idea is explained, “I feel better about leaving and doing my things no—
knowing that he is here and he's being stimulated a little bit and for somebody else to talk to him
for a while, or try to” (P1). The care-recipient benefits seemed to be a necessary component for
the caregiver to see a benefit to themselves, if they perceived any at all. One husband caring for
an MEP participant had a slightly different view and objected to calling the time that the care
recipient is at the MEP “free time.” He stated:
I mean I've had people say, ‘Oh, well, I got a free day.’ But—and—and it
aggravates me to hear 'em say that because—Why are you sayin' that? It's—now
you got a free day. I mean it's like you're bein' burdened. You know? And I
don't—I don't feel that way at all. (P6)
Though it was not discussed implicitly, caregivers made references to the added social
networking with other caregivers as a result of the MEP program. This concept will be discussed
later as part of the feedback from caregivers about the program, as this was seen as something
currently lacking, though not absent for everyone. One caregiver discussed another caregiver’s
absence now that her husband, a former MEP participant, had died. He stated, “You see ‘em
around. I mean, that’s nice. Um, but… [a former MEP participant] passed away, and that was
really sad 'cause, you know, well, now we miss [another Caregiver]” (P7). Three other
caregivers carpool from outside of St. Johns County. Though they knew each other before, they
have become greater supports to each other through their husbands’ participation in the MEP.
One of them stated, “I mean I already feel pretty blessed and fortunate that, you know, [friend’s
name B] and [friend’s name A] and I connected and our husbands are in somewhat similar
places, and we live really near each other” (P4). This same caregiver also clarified that the other
MEP caregivers could only help so much, explaining:
I don't feel like I have people that I could just pick up the phone and call. I mean
I could probably call [friend A] or [friend B], you know, and they would help me
in some capacity, you know, but they already kinda have their hands full with
their own situation. (P4)
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Care recipient benefit.
Benefits to the care recipients were considered to be of utmost importance to the
caregivers. Almost all caregivers responded to the question about the impact of the MEP on
them as caregivers by discussing positive benefits to the care recipient. Benefits for the care
recipient, as perceived by the caregivers, were stimulation, socialization, individual attention,
and creating purpose.
Stimulation for the care recipient was the most commonly cited benefit by the caregiver
with regards to the MEP. Stimulation was described by one caregiver in the following manner:
The things that they do, I think are good, you know. They talk, they do little
games and stuff, you know, and then she'll bring home some papers and stuff, and
I think that that helps her mind. (P12)
One caregiver clarified the difference between the MEP and typical custodial care, or even
having to make a decision to leave the care recipient alone. She stated, “He’s being stimulated a
little bit. Not just taken care of, but stimulated. As I said, I can leave him alone, but this is
better” (P1). This quote also highlights the importance for the caregiver to perceive that the
MEP has a positive impact on the care recipient. The MEP and the stimulation it offers is seen,
as demonstrated here, as an alternative. The alternatives were not always clarified, but as stated
above, some options included the care recipient being left alone, being put in paid care, or the
normal day-to day-with the caregiver. One caregiver stated, “It’s keeping her stimulated. It’s
something for her to do” (P15). Another said, “It’s not boring to these people. And I know—I—
we’re just so fortunate to have this” (P3). A third caregiver linked the concept of stimulation
with feeling good and allowing herself to take care of herself:
I know people think I’m crazy, but I—I do need that time, and I do need to think
about myself. But you know, some of us—women in particular, but me, in
general, too—is we don’t always think about ourselves. And so, I feel good,
knowing that he is here, doing something that I feel is helping him stay more
alert. That lets me feel okay. (P8)
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Socialization is another benefit for care recipients that caregivers saw as a benefit to
them. This is likely another reason that caregivers feel at ease or feel “peace of mind” regarding
the MEP and see it as a benefit to themselves. One caregiver stated, “I don’t know that it’s
making him any better, but it seems to be it’s better for both of us for him to see other people”
(P1). Another discussed the importance of the MEP in the context of getting older and having
cognitive impairments, saying:
Now this place has become probably the highlight of her life. Because when you
get older and you repeat yourself, and you really can't contribute, if you will, to a
conversation. I don’t think that friends call on you as much, on someone just old,
and don’t feel like talking or doing anything anyway, so this has been beneficial.
Cuz this is where she comes to socialize people—with people who are similar to
herself, you know? (P12)
This same caregiver went on to explain the importance of that socialization and being around
peers who are in similar situations:
It gets them out and mingling with others, so they can see that they're not alone.
And I think that that helps them. When you bring 'em home, they don’t feel so, I
think, defeated in life because they are the only ones that have this disease, you
know… And the friendships that she has formed are so beneficial. I mean, she's,
now two of her little good friends are here, you know. (P12)
The friendships formed among the participants was something another caregiver
discussed, “He likes to intermingle with these people. He thinks they’re all his buddies and
girlfriends” (P3). Still another caregiver discussed socialization in the context of her caregiving
situation and the benefits to her mother:
It’s, um, very social. It takes care of her—her socialization. You know? It’s—
with me, I needed to work. I needed to be sitting on my computer, not being
social at all, you know, and here she wants to talk with people and do things, and I
can’t keep up with that. (P15)
The social lives of the caregivers and participants was something that most caregivers mentioned
as having changed since the onset of MCI, making the MEP an important source for filling that
need. One caregiver described how their lives had changed socially, “I’m limited, very limited.
60
We used to go out to dinner and all that. She doesn’t even want—she doesn’t want to go out”
(P7). Another caregiver explained, “We both used to call friends…he was the one that sort of
withdrew from calling friends” (P14).
The difficulty of doing things together socially was mentioned by a wife caring for her
husband. She highlights the fact that they could still participate, but clearly recognizes that it
would not be the same, and in fact, for her social events are something to avoid. She stated, “We
used to do more social activities together. Which is limited now. Still could do it, but it would
be uncomfortable” (P1). Caregivers seem to perceive fewer direct social benefits from the MEP
when compared to their care recipient, though the caregivers still see a care recipient benefit as a
benefit to themselves.
Caregivers reported that care recipients are made to “feel like they can, well, support or
help those that are in the class,” giving the care recipients a sense of purpose (P12). This sense
of purpose was seen by the caregivers as beneficial to the care recipient and was something that
was important to the caregiver. Another caregiver explained how they helped her husband to
feel involved and like he was contributing:
I mean he's been able to do things for the memory program. They've let him get
all of his Alaska pictures—he's lived in Alaska—and take 'em around to different
memory facilities and do these little talks on his time in Alaska, which he loves to
do. (P4)
The program facilitators are able to meet participants’ individual needs and motivate them by
enabling them to help their peers. One caregiver explained:
I think [Program Director] kind of saw that, so she would always put her with
people that she could help, 'cause there’s always someone there that needs a little
more help… So [Program Director] would try and match her with people that
needed a little more push to talk more, communicate more, 'cause my mom will
talk your ear off…They see people’s, um, strong points and weak points, and—
and they work with it, you know, like I said, pairing ‘em up, you know, where to
place ‘em at the table. (P15)
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These actions led caregivers to feel like the care recipients were getting individual and
specialized attention which helped contribute to caregivers feeling a benefit from the program for
themselves.
Program Feedback
When asked to give feedback about the MEP, caregivers had varying responses. All of
the caregivers were happy with the quality of the MEP. Some caregivers felt that the MEP was
great and did not want anything to change and did not have further feedback. Other caregivers
had specific suggestions with regards to timing, number of days the program is offered,
facilitation of participant and caregiver gatherings, and communication of information. A third
category was caregivers who felt the need for the coordination of community and other
resources. The program feedback helps to clarify the proposed framework by describing some of
the barriers to attending the program. These barriers have the potential to impact all stages on
the continuum.
No changes recommended. One caregiver explained, “What I can say is please keep
and maintain the level of service you have now. If that goes up, great, but don’t let that slip.
Whatever you’re doing just keep doing that” (P7). Another, also satisfied, stated, “I think they
do a wonderful job. I don’t want 'em to do any more than what they're doing. I'm amazed at
how well they do it” (P1). Overall the caregivers felt “fortunate to have this” (P3). One talked
about the lack of resources like this in other communities and another, who was a snowbird in
the past, explained that they no longer went up north in the summer because there were no
resources like this in their community up there. Snowbirds are individuals who live in northern
areas during the summer months and move south during the winter.
Scheduling of program. Caregivers had conflicting views about the number of days and
times that the program was offered. Some wanted longer hours. One caregiver explained:
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One hour may not sound like anything big, but if you’re getting out at 2:00
instead of 3:00 there’s a big difference to me. Because if you’re going to go
lunch with somebody and still pick somebody up at 2:00 that could be a major
issue. (P18)
Other caregivers felt that “It's too much for them to have an all-day [program]” (P12). The
program is offered two days per week at some locations, and three days per week at others. This
was a problem for some caregivers who would like the option of three days per week: “If she
could have more days, it would be great” (P15). But they were concerned with the impact on the
care recipient of attending at different locations. One caregiver explained:
When I was having so much trouble and they were trying to help me, um, they
said, “Well, you know, we have Fridays, too. You could take him.” I said, okay,
I got two things wrong with that. Number one, I don’t wanna take him to a—a
different site. I—I think that’s confusing, and I don’t—different people, different
site, don’t wanna do it. (P8)
The conflicting views on the program demonstrate the need for individual flexibility within each
location. There is no configuration of days and times that will meet the needs of everyone,
illuminating how program scheduling can be both a barrier for some, a hassle for others, and
even a support at the same time.
Gatherings. One request that relates to the lack of caregiver social involvement with
each other is that gatherings to bring people together should be created. Though some caregivers
found a benefit in the caregiver network supported by the MEP, not all agreed. One caregiver
reported that caregivers shared information with each other, but that contact “is in passing, on the
way dropping off or picking up” (P15). Some discussed bringing just caregivers together, but
others requested a regular meeting for both caregivers and care recipients. One caregiver, who
was interested in a gathering, also articulated what the issues might be for caregivers, stating:
I always thought once a month would be fun if they had a, I don’t know, like, they
had, like, a—a potluck here, or like a—at night, but it would have to be at night…
One night when the caregivers came with, so that they can maybe talk to each
other, but I sometimes wonder if the people that caregive, are so tired at the end of
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the day that they may not want to come, even if they tried to host something. You
know what I mean? But it seems like when [care recipients are] in the group
together, they—they talk to all these other people, and th—they form these
relationships, but we as caregivers don’t always know who they are cuz we're not
in here as much. But it'd be fun for us to gather with them maybe, and so we
could see who they're talking about. But I sometimes—I mean, at night it's hard.
People work during the day, you know, so probably, yeah. But it'd be fun. (P12)
This highlights the desire to connect with other people who are involved with the MEP, but also
acknowledges that there are barriers to attending this type of event. Another suggested a
caregiver meeting at the end of a session, “every six weeks, for example, for them to say okay,
all you caregivers come in, and let’s meet each other for one day and two, tell me what’s been
going on in here” (P18). This quote illustrates the desire for more socialization for the
caregivers, but also the caregivers’ desire for more communication about the MEP.
More information. Caregivers reported wanting to know more about what the care
recipients are doing to help support the program and facilitate conversation and interaction
among the dyad. One caregiver explained:
I don’t know what they do in there, okay? I don’t know what goes on in
there…he gets in the car and I say to him, “What’d you do today?” or, “How was
your day?” or whatever. Not a clue. Most of the time he cannot tell me what
went on in there. But I would like to know so, one, I could initiate some
conversation, and help carry it—carry it forward. That kinda thing… But I—you
know, I just think they should do more of that. (P18)
The desire to follow through with the program demonstrates how involved and committed the
caregivers are to the care recipient and the desire for the care recipient to remain as high
functioning as they can for as long as possible.
Coordination of resources. Some caregivers spoke about other resources they felt
would further help them as caregivers or that would help facilitate participation in the MEP. The
main request was transportation, but caregivers also recognized that there are caveats associated
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with that type of service. One caregiver explained how her view on transportation services
changed as she thought about the implications:
Oh, my god, yes, if they would pick him up and bring him home, that would be
such a help. Uh, that would be so much help. And then I thought no, it wouldn’t
because, if they did that, these people are slow…I said they’d have to pick him up
at 7:00, you know and go all over town before they got him here. And, so, I’d be
getting up at five, trying to get him outta here, okay. And then, if he’s late—and
I’d be like this, trying to—the bus is coming, the bus is coming. And then I
thought, you know, it—it would be more problem than it would be worth, and it
wouldn’t be very feasible because it just wouldn’t be very feasible, you know
really, with trying to pick up these slow people and herd them around…and I
thought, I don’t think that’ll work. (P8)
This same caregiver also talked about a situation where she had a phone issue and the phone
company was late arriving; they wouldn’t stay at her home to finish the repair if she left to pick
up her husband from the MEP. She tried calling a local transportation service for people with
disabilities, but they required 24 hour notice. She explained:
So, I called to see if he could get a ride home on the bus that day… “Um, well,
no, you have to give us 24-hour notice.” Well, that’s kinda hard to do, isn’t it? I
just realized that [phone company]’s still here, and I can’t get him picked
up…What am I gonna do? And so, um, they said—and so they said that I had to
have 24-hour notice, and they also said, “And it’s 2.67 a mile.” And I figured ten
miles—$26.00 for you to bring him home? Just leave him on the street. Bye.
Yeah. So, that was, like, forget it, you know. So, the bus thing wasn’t gonna
work for me. So then, I thought, if there was just somebody there that I could call
and say, you know, I’m gonna be an hour late, is there—you know, so I wouldn’t
need him to stay every day, but wouldn’t it be nice if I didn’t have that panic. (P8)
This illustrates how both transportation and timing of the program can be a barrier for caregivers
whose care recipients do not participate in the MEP or a hassle for the caregivers who are
involved with the MEP and relates to the care recipients’ participation in the MEP in the
proposed framework.
Caregivers requested that in addition to transportation mentioned previously, other
resources should be coordinated with the timing and location of the MEP. One caregiver who
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lives in the north part of the county, about 45 minutes away from St. Augustine where there was
a class being offered, explained:
I had this experience with the um, class that they’re giving for caregivers right
now. And I feel very strongly about it. There is a lot of problems between
dealing with this area and St. Augustine…they were going to have a caregiver’s
class on Tuesday afternoon from 2:00 to 4:00. For six weeks, okay? So I said
“okay, now what am I going to do with my husband from 2:00 to 4:00 for six
weeks?” So I got on the phone and I called down…and I said well, “I’m just
going to bring my husband and I’ll give him a book to read and he can sit over in
the corner.” And um, oh, and she said, “No. No, no, no, you can’t do that.” So
she put me on the phone with—what is that girl’s name? Anyhow, whatever her
name was. And so she and I discussed the problem and how we could handle this
so far with them. Well, they have a daycare program down here, but she said I
don’t know whether we can uh, use that time, because they are locked into that
room. And I said, “Well I don’t—I just can’t come then.” And I hung up the
phone and it just pissed me off. (P18)
Another caregiver suggested, “You know, it might be good if they had some kind of
counselor to deal with individual problems as they come up” (P4). Her suggestion was that
someone be available during the times that the MEP is in session so that caregivers could easily
access that extra help. These quotes clarify the need to coordinate the timing and location of
resources in the community for this population. They highlight the potential for additional
supports to keep people attending the program for as long as possible. Due to their caregiving
duties and the limitations of resources being offered, community programs may not be reaching
the people for whom they are intended.
Stress Process Model
The interview questions were included in an attempt to gain an understanding of
caregivers’ experiences which yielded responses that bore a strong association to the stress
process model (Pearlin, Mullan, Semple, & Skaff, 1990). These findings emerged from the data.
There was no intention of looking for the stress process model, but as themes emerged, the
congruence with the stress process model could not be ignored. All components of the model
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were accounted for in the data. Though, as stated previously, the MEP program itself would fit
into the Pearlin et al. (1990) stress process model as a background and contextual variable, that
placement fails to account for the ongoing support provided by the MEP for the caregiver due to
the perpetual nature of the program. Caregiver responses for each of the four components of the
stress process model will demonstrate the appropriateness of using this model with MCI
caregivers as well as the modified placement of the MEP as a mediating condition.
Background and Context
Background and contextual variables in the stress process model include demographic
variables, caregiving history, family and network composition, and access to, availability, and
use of community resources. One caregiver discusses his background as a caregiver:
I was a caregiver prior to this, as my wife—last wife died of cancer…I didn't
know—I didn't even know of a hospice. I didn't know of anything like that. Now
I'm a retired fireman, and I retired to take care of her, basically. And—and I took
care of her, and she had an—an ovarian—first she had breast cancer. Then it was
ovarian…I mean I even made a thing cuz she couldn't go upstairs to the bathroom.
The only bathroom in the house was upstairs, so I made a—a thing for her that
she could just—outta wood—that she could sit on and go to the bathroom. I made
it so I could take it out and dump it and everything. So it’s not my first time. (P6)
This caregiver’s history demonstrated the impact of the stress process through his knowledge
about how to care for someone. Though the care for his current wife was different due to her
different diagnosis, he was able to build on that previous knowledge regarding community
resources and the importance of taking care of himself. From another perspective, though, this
caregiver had a very long caregiving history which could have negative impact on the stress
process. Other caregivers talked about caring for parents previously, or seeing their parents care
for their grandparents.
Many caregivers reported feeling on their own because other family members did not live
close by. Others reported having a small friend network as well. One caregiver explained, “He
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has four boys who are wonderful but they don't live here…And, of course, all of our friends,
most of 'em are dead. His are all dead. And so your support group gets smaller and smaller every
year” (P1). One interesting network and social support issue that was a common theme among
the caregivers was the snowbird problem. One caregiver explained this phenomenon when asked
about support from friends, “Yes. I have some, uh, females that are very good, but they're all
snowbirds and they go off for the summer” (P1). Another caregiver said, “I miss them terribly
when they leave” (P8). This demonstrates the lack of social support from family and friends that
was common among the caregivers interviewed and how background and context influences the
mediators, like social support, in the stress process model.
Primary and Secondary Stressors
Primary and secondary stressors are described by Pearlin et al. (1990) as being “at the
heart of the stress process in which caregiving may be embedded” (p. 586). Primary stressors
arise from the needs of the care recipient, seen essentially as the demands of caregiving that can
lead to other problems, labeled in the model as secondary stressors. Cognitive status is viewed
by Pearlin et al. (1990) as an indicator of primary stressors due to the influence of cognitive
abilities on caregiving demands and stressors, especially the relationship to problematic
behaviors. Problematic behaviors indicate the level of vigilance that caregivers must maintain to
prevent harm to the care recipient and potentially to others. Though there were varying levels of
cognitive status among care recipients, these themes were expressed by many caregivers. They
described cognitive behaviors that required constant vigilance as long as the care recipient was
awake and explained that there was no respite from it. This was an immense source of stress for
the caregivers and was perpetual in nature. One caregiver started discussing the stress associated
with one event with her pet dog, but went on to explain how vigilance was required all the time:
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I mean, he gave him all his, um, sweet potato skins the other night, and then I had
the dog throwing up and pooping in the house—and then having to clean up. So,
and—you know, and he feeds him the stuff that you’re not supposed to feed him.
And I look at him and he’s trying to clean matter out of his eyes, and the dog’s
blind and got one eye that we have to kinda watch. And, you know, it’s just like
one night, he—one night, he opened the front door and didn’t know the dog went
out, and, at 4:20 in the morning, I hear this crying, howling dog…so, you know,
this is just one more thing.
And then, the hearing aids, that’s one more thing. I have to watch when he goes
to the bathroom—that he doesn’t take the hearing aid out and throw it away. And
I have to, you know—so—um, I—I’m like this all the time. Yes. If I hear him go
in the kitchen—I really need to go rescue this kitchen, or else I’ve got this huge
mess. And I mean, it’s running down in the cabinets, and in the pots, and—okay.
And so, I have to run do that. If he leaves my sight, I have to run, be sure that
he’s not taking the hearing aid out and putting it in the shower, soap dish, or
something like that. Um, if I hear him open the front door, he’s not a wanderer,
he’s just checking the weather or something like that, but I have to get up and run
to be sure that the dog isn’t out, and didn’t get back in, and—you know.
So, um, when I think I’m gonna sit down and watch TV, and a program comes on,
um, and I’m—I’ve learned just to tape it and not get engrossed in it because I
probably won’t get to watch it. Because I’m watching it, and he gets up to go to
the bathroom, or he gets up to wander. Cuz he—doesn’t like the programs that
I’m watching, and, you know…he’s, um, he’s a rummager, you know. It’s like,
“What are you doing?” And—and it’s really interesting cuz I’ve heard this is
true—I mean, you know. Um, if he gets bored, then he goes to the refrigerator
and just starts rummaging. And, I really don’t care. And if he drinks 14—I’m
exaggerating—if he drinks—if he drinks three ginger ales a day, I really don’t
care anymore. I’m—I can’t hide that. But I had to hide the wine because, if the
ginger ale wasn’t in sight—he wasn’t looking for wine, he was just rummaging,
but if he didn’t see the ginger ale and he did see the wine, then he’s—drinking a
glass of wine, you know. And, um, then, he’s, um, rummaging in cabinets, and I
say, “What are you looking for?” and he doesn’t know, even, you know. And then
I’ll go in there, and he’s rummaging through drawers in the bedroom. What are
you looking for? “Well, um, I don’t know.” And he’s annoyed that I’m bothering
him, even. And I’m trying to help... If you’re with him, you’re on red alert. So,
that’s the story. That—that’s my whole story. (P8)
Other caregivers discussed similar situations related to vigilance with medications, kitchen
activities, and bathroom behaviors both at home and in the community. A few caregivers talked
about the need to be vigilant even when sleeping because the care recipient would wake up to
use the bathroom or walk around and not find the bathroom or have a fall. One caregiver
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explained his sleeping situation, “So I sleep light. Um, I’ve got a monitor on her and the visual.
I lay in the bed, and it’s right there, and I can open my eyes, see it, and go back to sleep” (P15).
The issue of vigilance was summed up by this quote, “So it’s just that constant being on guard
and watching, and yeah, and it’s, so it can be a bit stressful at times” (P12).
Pearlin et al. (1990) explains that an indicator of a primary stressor is related to the
number of activities the care recipient requires help with and the amount of assistance needed.
There were varying levels of assistance reported for ADL. Some caregivers only needed to
provide supervision for activities like bathing, while others provided physical assistance for the
activity. All caregivers reported providing assistance for IADL such as driving, medication
management, meal preparation, and household finances.
Additional sources of stress in the model were overload and relational deprivation.
Pearlin et al. (1990) explain that overload encompasses “not only the level of fatigue felt by
caregivers but also the relentlessness and uncompromising nature of its source” (p. 587). This
was apparent among the caregivers interviewed and exemplified by the long quote above from
P8. Relational deprivation speaks to the restructuring of the relationship between the caregiver
and the care recipient and the changes in the parts of their lives that were once shared. Many
caregivers spoke about having to come to terms with the changes in their life activities and their
relationship with the care recipient. One spousal caregiver stated, “I feel more put upon; now
he’s less attractive to me” (P1). Another said, “I’m limited, very limited. We used to go out to
dinner and all that. She doesn’t even want—she doesn’t want to go out” (P7).
Secondary strains in the model arise from changes and strain with regards to roles and
activities outside of caregiving, termed role strain (Pearlin et al., 1990). Role strain can come
from many different sources: family, work, financial, and constriction of social activities. Each
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of these types were identified by caregivers in interviews. The other type of secondary strain is
intrapsychic strain, which according to Pearlin et al. (1990) “involve dimensions of self-concept
and kindred psychological states” (p. 588). Pearlin et al. (1990) explains that, “The relentless
and progressively expanding demands of caregiving, together with ensuing secondary role
strains, are capable of diminishing positive elements of self; this, in turn, leaves people
increasingly vulnerable to stress outcomes” (p. 588).
Family conflict added to the stress caregivers felt. One caregiver discussed keeping
specifics of his current situation from his daughter who is having family issues of her own:
She’s overwhelmed. So I just shut up, and you don’t say anything, at least I
don’t. And everybody, you know, “Well, how’s mom doing?” “Yeah. Good.
Good.” You know? “Were we in the hospital getting 13 stitches in her hand?
Yeah, yeah, yeah. Don’t let it bother you.” “Oh, she broke her wrist?” “Yeah,
but don’t worry,” you know? These are things that—how—how can you actually
convey that to your daughter in that state of mind, and still be, you know—have a
good conscience about it? (P7)
Another caregiver described the conflict among her family that was resolved through judicial
action, though the disagreement results in a continued source of stress:
In 2011, um, one of my sisters—one sister was a—the, um, legal—power of
attorney, and the other was considered the, um, health care surrogate. Um, and
some decisions were being made, and my mom’s health care wasn’t being taken
care of properly. So the, um, power of attorney took over the care. And so the,
uh, health care surrogate didn’t really care for that, uh, took my mother to court,
had her determined incapacitated—with the hopes of becoming her sole guardian,
and, um, that didn’t—didn’t work. I became her guardian of person—um, and
another sister became guardian of property because they had people question the,
um, power of attorney, uh, ethics, basically—accusing her of stealing and things
like that.
Oh, it—oh, it was—it was just awful. Yeah. It was terrible, and my mom’s, uh,
uh, dementia had already been well underway, so she really didn’t know what was
going on, and it really wasn’t discussed with her very much, um, in—in a way
that would be upsetting to her. Um, but the sister who had, uh, started the
proceedings, um, did so in a very underhanded way, didn’t tell anybody that she
was doing this. You know? We—we received notice from the court that it was
happening. Um, she made appointments with the doctors, um, for review, the
three doctors that have to sign off on her. Um, so those were done without
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anyone’s knowledge…And given the information, it was decided that she was, uh,
incapacitated, and so I fought very hard to get the guardianship of person—and
got that. And then my sister, another sister, is the guardian of property. And so
there’s been clashes through that throughout. (P15)
This caregiver went on to discuss ongoing conflict between her siblings with accusations of
stealing and refusal to communicate pertinent information. This is demonstrative of how the
caregiving situation and disagreements among family can cause undue stress on the caregiver.
Caregivers expressed concern about financial issues, noting the cost of the program and cost of
paid in-home help. Job issues were also apparent for some, though most caregivers were retired.
It was difficult to find work that allowed for the flexibility needed by the caregivers. Finally, all
caregivers spoke of having to decrease their social activities due to their caregiving duties. All
of these role strains contribute to the intrapsychic strain experienced by the caregivers.
Mediating Conditions
In the Pearlin et al. (1990) model, coping and social support are seen as mediating
conditions that account for the differences in ways caregivers are affected by stress. Caregivers
discussed coping behaviors, though most also talked about their limitations with regards to
coping. One form of coping observed in the data was that of social comparison. Many
caregivers talked about others in more difficult caregiving situations. They even spoke of other
MEP participants who they viewed as “worse” than the person they were caring for. This
seemed to help the caregivers cope with their own situation, by noting that it could be more
difficult than what they were dealing with.
Most reported that they felt either guilt associated with taking care of themselves, or a
lack of time to take care of themselves, or both. Social support reported by caregivers in this
study was very limited. Most perceived that they had a small network and though they could ask
for help, it seemed they would only do so in a severe situation. One caregiver described how he
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coped with his situation, “And it’s, you know—it’s not a pretty picture. I don't look forward to
this at all. But what I will do is take it one day at a time and wherever that day takes us” (P7).
Another caregiver discussed how she was trying to cope better with her situation. This quote,
presented previously, helps to illustrate this finding:
All of what I’m doing now is totally contrary to my basic personality and
instincts, which means I have to work really, really, really hard to make all of this
that I’m doing work, and not totally go berserk. I find that patience is a real hard
thing for me to come by, and I’m—okay, so, I get very impatient. I get very
upset. I get very—which is very hard on the heart and the a-fib. And just trying
to keep it under control is worse than if I were blowing up, I think, you know. So,
I—so, I’m in a really bad situation because of my personality, you know. I—I
make—I make matters worse. Um, so, oh, gosh, for the last year, I know, it’s like
every day, it’s like could I just die and get outta this. I’m not—I’m not suicidal. I
would never commit suicide, but all I could think of is, you know, if I—if I would
just die, I wouldn’t have to do this. I’d be outta this. And, it’s just like, you
know, get up every day. Oh, please, dear god, why can’t I just die and not have to
do this. And, um, so, I guess that’s depression. I don’t know. But just please
leave me alone and let me get outta this mess I’m in…
I—I just noticed a couple of weeks ago, I’m getting up and going, can you believe
you really live here? This is so awesome. And, um, I’m not wonderful now, but I
mean, I’m, I can see—I can see progress in the right direction. I can see that I’m,
um—just not getting as upset as I was. I’m I—I’m able to just say oh, well…I
can’t—yeah, I—I’m not—I cannot take medicine, and I don’t want to, and I can’t.
And I can’t—and I couldn’t go on. I mean, I just—something had to give, and I
just work at it every day.
And I’ll tell you, um, interesting, um—one thing. [Caregiver Class Facilitator]
called me… She’s just awesome. Those—I haven’t seen her in a while, but they
have all taken such good care of me, at the early parts of all this. And, uh—if I
called [Caregiver Class Facilitator] now, she’d know who I was and be right
there. She’s just awesome. They got a woman—I can’t remember her name
now—um, might come to me cuz she was very nice. She was a grief counselor
for [hospice organization]—and she agreed to do some counseling, like four
sessions, for people in my situation that might be interested, sort of a trial
program…Um, I don’t remember anything, but maybe one thing, but I mean
that’s all you need sometimes.
Um, but she—she told me one day—you know, she said—cuz I get very resentful,
you know. Why are you doing this to me? What do you mean? Sit down and
just be quiet and let me watch this program, you know. And, uh, she said,
um, “You know, you’ve got to remember that he’s doing the best he can. But
more importantly, you’ve got to remember you’re doing the best you can.” She
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says, “You’re human, and you’re not expected to always be patient, and you’re
not expected to always—please remember that you are doing the best you can,
too.” And that’s very helpful because, you know, you are trying, and you do feel
like you’re doing the best you can, and it’s not working. (P8)
This quote was included because background and context, stressors, mediating conditions, and
outcomes are all represented. In addition, it demonstrates the interconnectedness of all stress
process components. Other quotes represent components of this overall process, but this quote
brings all of these pieces together.
In later research, the mediating conditions like spirituality and religiosity were added to
the stress process model (Blieszner & Roberto, 2010; King, Hartke, & Houle, 2010; Leblanc,
Driscoll, & Pearlin, 2004; Sun & Hodge, 2014), though caregivers did not speak to these specific
variables in this study. However, among the mediating conditions it is recommended that the
MEP program becomes a new variable and adaptation of Pearlin et al. (1990). The MEP is not a
standard intervention that begins and ends; it is a perpetual program. While people are enrolled
in the program it must be viewed as a more active player in the model, not merely a background
or contextual variable. As one caregiver said, “I’m basing my whole life around this” (P6).
Outcomes
The point of the stress process model is to account for and potentially predict physical
and mental outcomes that contribute to the overall well-being of caregivers. Caregivers
interviewed discussed impacts to both health and quality of life as a result of caregiving.
Depression was reported by a few caregivers interviewed and as noted in Chapter 3, high scores
were commonly found on the CESD-R among the survey respondents. Other caregivers reported
unexplained diarrhea, diverticulitis, atrial fibrillation, and other health conditions that they felt
were a result of being a caregiver. One caregiver responded to a question about how caregiving
impacted her quality of life by explaining:
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Um, my freedom of going and coming, and doing, and having my life, and my
friends, and my activities, and going to the store, and my whole life, and my home
that I loved so much, and all that stuff is all gone. I can’t do any of that. So, I’ve
had to make a change. In addition to that, I’m older. And my life is—is different.
I mean, I don’t feel as well. I’m tired. I, um, I get more upset easily. I—I—
it’s—it’s hard for me, you know. In addition to that, the dog that was sorta my
salvation has gone blind, and I’m having to be a caregiver for this dog. So, um,
my life is so totally changed that—that that’s all I can tell you. It’s totally
changed. (P8)
Another caregiver explained how she viewed her quality of life differently:
Sort of the nature of the quality has changed. That I feel like I'm probably having
a life now that's more like, you know, mothers have with their young children.
That—you know, where things are maybe more centered around them and—and
responding to certain needs, and, you know—[chuckles]—we focus on our
animals, and we're, you know, more stationary. We don't do as much traveling,
but we still do some traveling. And I wouldn't say it's a—it's not a lessened
quality of life. It's basically just a slower life. (P4).
Though difficult to ascertain specific health outcomes, these quotes illustrate how the outcomes
are impacted by caregiving and multiple components of the stress process model.
Summary
Interviews with caregivers revealed rich data that offered insight into caregivers’
experiences with the MEP. Analysis of interviews brought to light a framework that helps to
explain participation in the MEP. The participation framework consists of a continuum that
begins prior to participation in the program. Interviews suggested that caregivers chose to begin
participation when the perceived benefits of the program outweighed the perceived barriers,
participation continues as long as the perceived benefits outweigh the hassle factors associated
with participation, and finally, it is hypothesized that participation ends when the care recipient’s
symptoms have progressed or the barriers to participation become too great and outweigh the
perceived benefits. Analysis of interview responses also supports the use of the stress process
model with MCI caregivers. All components of the model were represented in the data.
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However, the fit of the MEP as a background and contextual variable was questioned due to the
active role it plays in the lives of the caregivers interviewed.
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CHAPTER 5
DISCUSSION
Interviews with caregivers of people with cognitive impairments who participate in the
MEP revealed new information about participation in the program and the fit of the stress
process model for MCI caregivers. The specific aims of the project were to a) describe the
caregivers’ experiences with the MEP program to identify variables that potentially influence
caregiver outcomes, and b) to evaluate the caregivers’ experiences and outcomes resulting from
care recipient participation in a community-based cognitive intervention program. Through the
interviews a thorough description of the caregivers’ experiences with the MEP program was
obtained. These findings provide a framework to explain participation in the program from the
caregivers’ perspectives.
Themes identified through inductive data analysis of caregiver feedback and outcomes
were parallel to and support the use of the stress process model for MCI caregivers. When
viewing the results in the context of the MEP, a novel concept emerged with regards to the
placement of the MEP in the emerging framework. Program participation, a background and
contextual variable in the stress process model, does not fit with the MEP program due to the
perpetual nature of the program and the supports and benefits that it offers to the caregivers
during care recipient participation. The MEP emerged as a mediating condition in the caregiver
stress process during program participation. Additional significant findings from this research
include the impact of vigilance on MCI caregivers, social comparison as a form of coping, social
constriction among MCI caregivers, and caregivers’ use of deception with MCI care recipients.
Findings from this study offer insight about how to support family caregivers and overcome
barriers to participation in community-based cognitive intervention programs. The modification
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of the stress process model to accommodate a unique program offers insight into how these
programs impact the stress process of MCI caregivers.
Participation Framework
In the findings, the idea developed that participation in the MEP from the caregiver
perspective can be viewed as a continuum, because it is an ongoing process. At each stage there
is an evaluation by the caregiver of the perceived benefits and perceived barriers to participation.
The continuum begins prior to any involvement in the MEP, it continues with the start of
participation in the program, followed by continuing in the program, and finally the continuum
ends with the participant leaving the program. Responses from caregivers about their caregiving
background and how they came to be a caregiver, as well as responses regarding how the
program could be improved, helped offer insight into perceived and actual benefits and barriers
to program participation.
Prior to participation, caregivers found out about the program in many ways. Local
advertising was the most frequently cited method of notification, with newspapers and
community newsletters being the most common. Once aware of the program, caregivers went
through an internal process of weighing the perceived supports, benefits, and barriers. One
support presented in the findings was particularly important for the decision by caregivers to start
the care recipient in the program, peer participation. When caregivers heard about the program
from another caregiver they were very motivated to begin participation. This peer engagement
tipped the balance and led to caregivers enrolling the care recipient in the MEP. Though the data
does not indicate that peers were involved in making the decision, research on decision-making
among caregivers of people with heart failure indicated that when the care recipient was not able
to participate in such decisions, caregivers looked to others, such as family, friends, and health
care providers for more information and opinions (Sanford, Townsend-Rocchicciolli, Horigan, &
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Hall, 2011). Word of mouth may be a more powerful tool to reach other caregivers than typical
advertising among MCI caregivers.
The findings also showed supports, benefits, and barriers that caregivers weigh when
deciding to participate, such as care recipient interest in the program, need for the program,
scheduling of the program, transportation, cost, and perceived benefit for the care recipient. A
few caregivers discussed using deception to gain acceptance from the care recipient regarding
participation. This is reinforced by findings from Lu and Haase (2009) where spousal MCI
caregivers reported using white lies to communicate with the care recipient because of the
conflict between reality and the care recipients’ understanding of the situation. Use of deception
by caregivers and nurses with people with dementia has been documented and has been regarded
as potentially acceptable when the best interests of the care recipient and other factors are met
(Blum, 1994; Day, James, Meyer, & Lee, 2011; Elvish, James, & Milne, 2010; Howe, 2011).
Once the care recipient starts the program, additional benefits and barriers come into
play, in addition to the ones presented above. These include perceived benefits for the caregiver
and increased perceived benefits for the care recipient. The benefits for the caregiver, peace of
mind, time to do other things, and contact with other caregivers, were seen as secondary and held
diminished importance compared to other factors. This is consistent with findings from a study
on spousal caregivers of people with dementia, which looked at use of services like a day respite
program on caregiver burden. The authors reported that caregivers felt relief at having time to
do things, but caregivers did not view this time as just a break. It “was a time when caregivers
believed that their partners were receiving the stimulation and socialization they needed to
maintain their levels of functioning” (Sussman & Regehr, 2009, p. 36). Another possibility for
this finding is that caregivers may feel guilty about the program benefitting them directly. Many
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of them discussed feeling guilty for getting away and making time for their own stress relief.
Feelings of guilt have been associated with decreased quality of life, burden, depression, and
distress among family caregivers of cancer survivors and AD (Duggleby et al., 2014, 2015;
Losada, Márquez-González, Peñacoba, & Romero-Moreno, 2010).
Increased benefits for the care recipient were identified by the caregivers, who verbalized
that they saw more benefit to the program for the care recipient than they sometimes initially
expected. Caregivers talked about how the care recipient was more alert and easier to care for on
the days that they attended the program. This finding was consistent with research on caregivers
of people with dementia which reported that when people with dementia engaged in positive
activities, the caregivers reported that they were happier, more alert, and easier to get along with
(Roland & Chappell, 2015). Activity for people with cognitive impairments seems to impact
both the person with the impairment and their caregivers. The MEP is unique in that it is an
ongoing program, different from other programs that only operate for a specific amount of time.
Caregivers continue to receive the benefits of a care recipient who is happier, more alert, and
easier to get along with on an ongoing basis.
Some caregivers expressed frustration and stress related to the scheduling of the program
and transportation, which can be barriers. But at this point in the continuum, these are merely
hassle factors associated with caregiving. Hassles have been described as minor irritants that can
accumulate over time and impact an individual’s health and well-being (Travis et al., 2009). The
term hassles is used because scheduling and transportation as barriers have been overcome, and
at this point they may be inconveniences, but are no longer barriers to participation in the MEP
for the caregiver or the care recipient.
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Caregivers noted that eventually the care recipient would no longer be eligible to attend
the MEP. Some caregivers were already making accommodations to keep the care recipient in
the program. One caregiver went to the program in the mid-morning during each session to take
the care recipient to the bathroom since the program facilitators are not allowed to assist with
that activity. People exit the program when the level of impairment becomes a barrier to
participation, if for example, the participant requires assistance with transferring, toileting, or
feeding. Another reason program participation would end is if the hassles became too great and
again became barriers greater than the perceived benefits. One caregiver was looking for work,
though she wanted to find work that would allow her to continue bringing her mother to the
MEP. If her financial situation proved too dire and other supports could not be identified, then
the care recipient may have to exit the program. This is an example of how the perceived
benefits of the program may not be able to overcome the barriers, in this case a financial and
time issue.
Application of the Stress Process Model
Though a few studies have applied components of the stress process model to MCI
caregiving, this is the first qualitative study with MCI caregivers to find evidence of all
components of the stress process model. The findings related to the stress process model
emerged from the data as themes that are typical for caregivers. The dynamic nature and inter-
relationship between the concepts exhibited an association with the stress process model that
could not be disregarded. Caregiver responses were presented that demonstrate the
appropriateness of using this model with MCI caregivers. In addition, the placement of the MEP
as a mediating condition in the stress process model will be discussed.
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Background and Context
Pearlin et al. (1990) explain that background and contextual variables are important
because “virtually everything we are interested in learning about caregiving and its consequences
is potentially influenced by key characteristics of the caregiver” (p. 585). Evidence for the
influence of socioeconomic characteristics, caregiving history, family and network composition,
and program availability for the caregiver and care recipient on primary and secondary stressors,
mediating conditions, and outcomes were all evident in the data from this study. Factors like
caregiving history showed that caregivers who cared for other family members felt more
acceptance over their role and understood the importance of engaging in coping behaviors like
making time for themselves, with resulting impacts on quality of life and health. Socioeconomic
status was variable among the participants, so it is difficult to make connections with other
components in the stress process model due to the lack of comparison with other caregivers in
the community who do not participate in the MEP. However, in a review of quantitative MCI
caregiving literature, Seeher et al. (2013) reported that only background and context
characteristics of longer symptom duration, younger age, and lower education have been linked
to stress, depression, and feelings of being a burden.
One variable that became prominent in the data, and the only background and contextual
variable that was found to be generalizable to the group, was that caregivers overwhelmingly
reported a small network. This is supported by findings from a recent study on dementia
caregiving that found caregivers has significantly lower social capital scores than non-caregivers
in the same neighborhood (Papastavrou, Andreou, Middleton, Tsangari, & Papacostas, 2015).
Social capital is defined as “the range of social contact that gives access to social, emotional and
practical support” (Papastavrou et al., 2015, p. 1). This helps to explain the lack of social
support, a mediating condition in the stress process model, also reported by the caregivers.
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Many caregivers reported that social activities had significantly decreased since the
diagnosis of the care recipient with mild cognitive impairment or Alzheimer’s disease. Some
discussed the discomfort that they or the care recipients felt about continuing to engage with old
friends in the context of inappropriate behaviors. Others said that their social contacts had moved
away or died as a result of increased age. Given the level of care that these caregivers provide
and the lack of time they spend doing things for themselves, they also may not have the time or
energy to maintain their current relationships or invest in new ones. Some caregivers reported
that while they still engaged with some social contacts, the care recipient had very few or none
outside of the MEP. A study by Parikh, Troyer, Maione, & Murphy (2015) compared changes in
social interactions and relationships between older adults with normal memory changes and
those with aMCI. Social withdrawal and social exclusion was reported by people with aMCI,
but not in the other older adults; one of the main reasons given for social withdrawal was
embarrassment about memory issues (Parikh et al., 2015). Participants with aMCI reported
social exclusion events where they were cut off or left out of conversations, and they felt that
their friends’ attitudes had changed toward them in a negative way (Parikh et al., 2015).
Primary and Secondary Stressors
Primary and secondary stressors “are the conditions, experiences, and activities that are
problematic for people” (Pearlin et al., 1990, p. 586). Problematic behaviors due to cognitive
impairments were reported by caregivers and these were a primary source of stress. Another
source of stress related to these behaviors was the constant vigilance caregivers felt was required
whenever they were around the care recipient. Additionally, ADL and IADL assistance,
relational deprivation, role strain from family conflict, work issues, financial worries and social
life constriction led to intrapsychic strain experienced by caregivers with good congruence with
the stress process model. These findings are corroborated by the study by Seeher et al. (2013)
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which concluded that behavioral symptoms, ADL assistance, and relational deprivation have
been linked to feelings of burden and depression in MCI caregivers.
One of the times that vigilance is required and is particularly problematic is during sleep
participation. Sleep participation includes sustaining a sleep state without disruption and is
important for the health and well-being of people (American Occupational Therapy Association,
2014). Though no other studies of MCI caregivers have noted this finding, the literature on
dementia caregivers offers insight on this finding. A study by Simpson & Carter (2013a) with 15
caregivers of a person with dementia found that disruption to sleep was due to a fluctuation in
sleep quality of the care recipient, a need for vigilance at night, and worrying about current and
future events. Poor sleep quality and greater fatigue has been found to be more common in
dementia caregivers than non-caregivers (Rowe, McCrae, Campbell, Benito, & Cheng, 2008).
Sleep disturbance has been found to contribute to adverse health outcomes such as depression
among dementia caregivers (Simpson & Carter, 2013b). MCI caregivers will likely become
dementia caregivers, highlighting the importance of this issue and the need to address the
problem early so the effects are not compounded over a potentially long caregiving career.
Role strain due to an alteration in daily activities, taking on tasks that the care recipient
used to do, and decreased social activities were reported by caregivers and seen as stressful,
similar to findings in other studies of MCI caregivers (Lu & Haase, 2009; Savla et al., 2013).
Caregivers who were spouses spoke about being responsible for tasks that they had not ever done
before and about becoming the sole decision maker. This is corroborated by findings from a
study by Garand et al. (2005) that of MCI caregivers who reported responsibility for
transportation, household business affairs, running errands, managing finances, making medical
decisions, making telephone calls, and making house repairs, the majority of these tasks were
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new responsibilities for them. A review of qualitative MCI literature by Dean and Wilcock
(2012) also found that MCI caregivers took on new roles related to decision-making and IADL,
while also trying to maintain the care recipient’s sense of independence. Lu and Haase (2009)
explain that traditional gender roles contributed to wives feeling increased stress over new
decision-making responsibilities.
Decreased social activity or social life constriction was described by many caregivers in
this study. While some caregivers made efforts to continue engaging in some of their previous
roles like working or volunteering, every caregiver interviewed had decreased the amount and
frequency of social activities. Social life constriction amongst MCI caregivers has been
described in other research (Austrom & Lu, 2009; Dean & Wilcock, 2012). When giving
feedback about the MEP, caregivers were looking for opportunities to connect with other
caregivers, as a source for increased social networking and activities which could be
incorporated to ameliorate some of the role strain issues.
Intrapsychic strains like low self-esteem or a change in a caregiver’s sense of self were
also reported. Caregivers discussed feeling frustrated with themselves for being impatient and
not being understanding about the inability of the care recipient to remember things or control
inappropriate behaviors. In a mixed methods study with caregivers of people with MCI
Blieszner and Roberto (2010) reported similar findings. Intrapsychic strains were often related
to feeling frustrated and seeing changes in themselves that they found unacceptable. One
caregiver in this study discussed how meeting with a counselor through a free community
program had helped her to feel better about her moments of frustration and lack of patience. It is
possible that other caregivers could benefit from this type of intervention to decrease these
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strains, especially in light of the fact that intrapsychic strain has been found to be significantly
associated with depressed mood in MCI caregivers (Lu et al., 2007).
Mediating Conditions
Caregivers felt limited in their coping abilities overall, and this likely contributed to
feelings of stress. However, caregivers frequently used social comparison as a coping
mechanism, which has not been reported previously among MCI caregivers. Social comparison
is a coping mechanism that people rely on to cope with difficult situations (Kedia, Mussweiler,
& Linden, 2014). It has been documented that women with breast cancer use social comparison
as a coping mechanism that serves to minimize the severity of their situation and maintain
positive feelings (Stanton, Danoff-Burg, Cameron, Snider, & Kirk, 1999; Wood, Taylor, &
Lichtman, 1985). Similarly, the caregivers in this study, when asked about how the MEP
benefits them, talked about how it was clearly helpful and beneficial to them, but even more so
for people who they viewed as worse off than they were.
As discussed previously, small social networks, social life constriction, and social
isolation of the caregiver were prominent themes. This led to a diminished sense of social
support, which in the stress process model could serve as a mediating factor with the potential to
have a protective influence on caregiver outcomes. Researchers have reported that MCI
caregivers have social support needs similar to caregivers of people with AD (Ryan et al., 2010).
Unfortunately the majority of caregivers in this study did not feel like they had adequate support
from family or friends, which is consistent with results found in another study with MCI
caregivers by Ryan et al. (2012). The caregivers who did have some support found that support
to be essential to their ability to manage as a caregiver. This is echoed in the findings of a
qualitative study by Blieszner and Roberto (2010) who reported that “relationships with friends
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and neighbors also offered crucial instrumental assistance and emotional encouragement” (p.
17).
Though inconsistent, other research has reported that religiosity can serve as a mediating
condition in the stress process model, but that was not reported among the participants in this
study (Blieszner & Roberto, 2010; Dilworth-Anderson, Williams, & Gibson, 2002; Leblanc et
al., 2004; Sun & Hodge, 2014). Leblanc et al. (2004) explains that religiosity has been found to
be a coping mechanism among African American caregivers more consistently than among
White caregivers. As the sample from this study was 100% White, the findings are consistent
with previous research. It is possible that because questions about religiosity or spirituality were
not explicitly asked, it did not occur to caregivers to mention it.
MEP as a Mediating Condition
In the stress process model, Pearlin et al. (1990) considered use of a resource such as
community-based programs that are intended to benefit the patient, caregiver, or both, as a
background and contextual variable in the model. Dementia research tells us that many factors
influence program participation, including marital status, age, gender, cohabitation, severity of
dementia, patient comorbidities, and caregiver self-efficacy (Gitlin, Corcoran, Winter, Boyce, &
Marcus, 1999; Kaisey et al., 2012; Schneider et al., 2002). For caregivers in this study,
participation in the program was influenced by background and contextual variables, such as
availability of the resource itself, social network, and socioeconomic characteristics, specifically
financial status. But once engagement in the program begins, the program is no longer part of the
background. The manner in which caregivers in this study describe the benefits of the program
serves as a contrast to the description by Pearlin et al. (1990). The MEP is not just background
and context to these caregivers; it is an integral part of their lives. It is clearly an active support
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to them and thus should assume a more active role in the model during the time that the care
recipient is engaged in the program.
The findings from this study indicate that the MEP influences primary and secondary
stressors, specifically, cognitive status, problematic behaviors, feelings of overload, and social
life constriction. The study also indicated that the MEP influences caregiver outcomes in the
stress process model. In the stress process model, mediating conditions are pictorially
represented as both mediators and moderators of the other variables, except background and
context. It is likely that the MEP acts similarly. It must be acknowledged that it can be difficult
to tease apart these distinctions with so many variables and relationships. Another possibility is
that moderated mediation, or conditional indirect effects are occurring. Muller, Judd, and
Yzerbyt (2005) explain that “moderated mediation happens if the mediating process that is
responsible for producing the effect of the treatment on the outcome depends on the value of a
moderator variable” (p. 854).
MEP impact on primary and secondary stressors is demonstrated by caregivers’ reports of
more positive behaviors from the MEP participants following MEP sessions. Caregivers also
reported that when they were away from the program, they felt the care recipient declined with
regards to difficult behaviors and increased cognitive symptoms such as confusion. However,
upon return to the MEP, their behavior and confusion subsided again. In addition the program
served to decrease feelings of overload among caregivers who found the time received from
MEP program was vital to managing their life and caregiving responsibilities. Though
caregivers requested more social contact, they also acknowledged that the MEP helped to reduce
their social life constriction. Outcomes in the stress process model were influenced by the MEP
as documented by caregiver reports of peace of mind, decreased anxiety, and increase quality of
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life related to making time for themselves. Caregivers felt that they were doing what was best
for the care recipient through the MEP, which provided stimulation, socialization, and a sense of
purpose for the care recipient. This peace of mind helped to decrease anxiety about their current
situation. Some caregivers felt that the MEP helped maintain the care recipients’ cognitive status
and even kept the condition from worsening. Quality of life was also influenced by the MEP, as
demonstrated by caregivers’ reports of the benefits to the caregiver and how essential the
program was to their lives.
It is possible that when considering programs as a background characteristic, Pearlin et
al. (1990) considered programs that were offered on a limited basis. Currently, all research on
community-based cognitive intervention programs focus on those that are only offered for a
specific time period (Horr et al., 2015; Li et al., 2011; Moro et al., 2012; Reijnders et al., 2013).
The MEP program, as mentioned before, is unique in that it is an ongoing program. It is
understandable that once a program is completed it may no longer serve as a mediating
condition, but may fall back into place in the model as a background and contextual variable for
the caregiver. This clarifies another critical concept missing from the stress process model, that
of engagement. Availability of programs makes sense as a background and contextual variable,
but engagement in a program, no matter the duration, should not be equated with its availability.
According to Pearlin et al. (1990) caregiver stress is a dynamic process, supporting the idea of
dynamic and changing elements in the stress process model.
Outcomes
Caregivers discussed quality of life and health outcomes as a result of caregiving. Some
caregivers did not feel that caregiving had impacted them from a health perspective, but others
reported health concerns that they directly attributed to caregiving. Quality of life was either
reported as diminished by caregivers, or changed. Lu and Haase (2009) reported that for MCI
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caregivers, quality of life was significantly affected, but a study by McIlvane, Popa, Robinson,
Houseweart, and Haley (2008) reported conflicting findings. Caregivers who reported a changed
quality of life explained that they were evaluating the quality of their lives differently than they
had in the past; essentially, the nature of the quality has changed. This perspective of a changed
quality of life has not been previously reported in the literature.
Limitations
The sample size of this study can be viewed as a limitation, especially due to the fact that
there was more attrition then expected for the interview portion of the study. However over 10
hours of interview transcriptions, plus field notes, were analyzed and these were sufficient to
reach saturation on the participation continuum and the stress process model. In addition, the
findings were presented to caregivers who participated in the interviews, to MEP staff, and to a
data analysis group which helped to confirm the findings. Another limitation for this study
relates to researcher experience. However, weekly research meetings with a faculty expert in
qualitative research during development, execution, and analysis of this study validated the
process and findings.
Further limitations relate to the population. The participation continuum that was
proposed was developed from interviews with caregivers who were currently engaged with the
MEP through their care recipient. To confirm the use of the continuum, future interviews with
caregivers of people who do not participate in the MEP, as well as caregivers of people who
previously participated, will be necessary. In addition, the MEP is located in St. Johns County,
Florida, making it difficult to generalize the results to caregivers in other areas. Categories were
saturated for this population, but different caregivers may have different views. Unfortunately,
the sample was homogeneous with regards to race and there were only two male caregivers who
participated. There was some diversity with regards to dyad relationship, but the majority of the
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caregivers were spouses. Obviously, such limitations did not allow for comparisons with regards
to these variables. A final limitation was the lack of a specific MCI diagnosis. Though the MEP
criteria for enrollment is synonymous with criteria for diagnosis of MCI in the literature, the
MoCA scores and interviews revealed that some MEP participants had progressed beyond mild
cognitive impairment levels. It is important to note that all participants still met the requirements
of the MEP criteria, so though some may have had a diagnosis of AD or qualified as more than
mildly impaired on the MoCA, they were still at early stages of impairment.
It is necessary to address the role of the stress process model in this research. It is
recognized that use of an a priori theoretical framework is controversial, but also that grounded
theory does not occur in isolation from other theories and perspectives (Elliott & Higgings,
2012). The stress process model was not selected as a theoretical framework to be applied to the
data and analysis. Support for the use of the literature for context, sensitizing concepts, and
comparison is documented. Even Glaser and Strauss (1967) recognize that researchers cannot
forget the theories they know as they enter into the research process (Bowen, 2008; Charmaz,
2006; Elliott & Higgings, 2012). In this case the stress process model was originally found
through “a preliminary review of the literature in the substantive area” as a means of gaining
theoretical sensitivity; it was not used “to impose a framework on the data” (Elliott & Higgings,
2012, p. 8-9).
Research Recommendations
The literature on MCI caregivers and how cognitive intervention programs impact the
caregiver is scarce. It is clear that more research is needed to understand how these programs
can mitigate stress and negative health outcomes faced by MCI caregivers. Findings from this
research that should be investigated further are the participation continuum along with the use of
deception, the modified placement of the MEP as a mediating condition in the stress process
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model during care recipient participation in the program, social comparison as a coping
mechanism, constriction of the social network, and the impact of vigilance.
Participation Continuum
Future research on the participation continuum should investigate these findings with
caregivers who have not yet participated in the program and those who have left the program.
Different populations of caregivers and different cognitive intervention programs would help to
support or refute the participation continuum. This information might help to identify additional
barriers to participation and offer insight on how those barriers can be overcome. Along with
this, an exploration of the use of deception by MCI caregivers in order to engage care recipients
in the program is needed. Implications for the use of deception among MCI caregivers should
also be investigated. A better understanding about why people leave the program, from people
who have had that experience, would offer clarification on the “exiting the program” component
of the participation continuum.
Stress Process Model
Further exploration of the application of the stress process model for MCI caregivers is
needed. Exploration of program participation as a mediating condition during the actual time of
participation and as a background and contextual variable after program participation ends is also
warranted. A better understanding of how the program moves from a background and contextual
variable to a mediating condition is an important area of future inquiry. The concept of vigilance
was prominent in caregiver responses, but has not been investigated among MCI caregivers.
Vigilance seemed to be an ongoing stressor that was only relieved when the care recipient was
not with the caregiver and the caregiver felt that they were being properly looked after.
An additional stressor that warrants further investigation is social constriction.
Caregivers seemed to have a small and fluctuating support network which impacted their ability
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to care for themselves. A better understanding of social constriction among MCI caregivers may
offer insight on ways to prevent social constriction or at least help caregivers utilize and enhance
the support that they have. Social comparison was utilized by many caregivers in describing
their current situations, but has not been investigated among MCI caregivers. The frequent use
of social comparison seemed to indicate that caregivers utilized this as a coping mechanism, but
further investigation is needed to confirm this finding.
Survey Instruments
As this was a qualitative grounded theory study, quantitative survey information was not
analyzed except to provide information about the sample and to aid in purposive sampling.
Future research could analyze the quantitative data gathered during this study to identify
differences among caregivers that may help with targeted interventions. In addition, a
comparison of survey instruments with interview response data could offer interesting insight
into the construct validity of the instruments utilized.
Recommendations for Cognitive Intervention Programs
It is necessary to understand each caregiver’s unique situation. An intake form for
cognitive intervention programs that would gather information about the caregivers’ current
responsibilities and needs would be helpful. This information could be used to connect
caregivers with other community resources. With regards to program participation, word of
mouth may be a more powerful tool to reach other caregivers than typical advertising. People
utilizing the program often did so because someone they knew attended. Getting the word out in
the community so that more people are aware of the program may help increase participation.
A monthly evening gathering for caregivers and MEP participants would help to increase
communication and enhance socialization for caregivers. In addition, these gatherings would
provide a way for the dyad to engage in social activities together and for the caregiver to meet
93
other caregivers and participants. This is a way for people engaging in fewer social activities to
do so in a way that is comfortable and familiar to them. It would also provide a source of
conversation to enhance communication between both members of the dyad.
A weekly bulletin that states the topics that will be covered for the week would help
caregivers feel more connected to the program. This bulletin could help caregivers engage in
conversation with the care recipient about MEP activities. It could also be a source of ideas for
activities to do at home with the care recipient.
Providing caregivers with a list of resources available in the community and a description
of how those resources could support caregivers would help caregivers to more effectively find
and utilize existing resources in the community. Another recommendation is for programs like
the MEP to communicate and collaborate with other community programs specifically for
caregivers. For example, caregiver seminars or classes could be offered during the same time
that the MEP meets so that caregivers can join while the care recipient attends the MEP.
Public Health Implications
The social ecological model helps to relate the findings to practice implications for
cognitive intervention programs and their potential to impact the health of MCI caregivers. The
social ecological model serves as a framework reminding us that health is impacted
simultaneously by different levels of the model (Centers for Disease Control and Prevention
(CDC), 2015). In order to prevent or impact MCI caregiver health, it is recommended that
actions be instituted across multiple levels of the model (CDC, 2015).
At the individual level, health can be promoted through attitudes, beliefs and behaviors
(CDC, 2015). Training in life skills would help MCI caregivers adjust to new roles and would
help to prevent the stress and strain associated with the new roles they have assumed. For
example, classes to teach caregivers tasks that are new to them, such as how to manage finances,
94
obtain car repairs, and complete other home management responsibilities could be beneficial.
Also important is the necessity to encourage caregivers to care for themselves so that they do not
put their own health needs aside.
At the relationship level, the focus is on interpersonal relationships (CDC, 2015).
Raising awareness about community programs for MCI caregivers and people with MCI among
healthcare professionals and the community in general would be helpful. The literature tells us
that caregivers in other caregiving situations often turn to friends and healthcare professionals for
advice. If more people in the community, including healthcare professionals, are aware of
resources and caregivers’ need for them, this may help to engage more caregivers and care
recipients in available programs.
At the community level, impact is focused on the social and physical environment (CDC,
2015). This is where an increase in community resources for MCI caregivers and care recipients
would be of benefit. Communication and coordination of the resources mentioned above could
have a positive impact. In addition, flexibility in the workplace should be expanded for
caregivers, so that they are able to be productive, but are also able to meet their caregiving needs.
Consistent diagnostic criteria to better identify people with MCI and their caregivers so that they
can be targeted early in their caregiving careers may help to decrease the long term stressors
associated with caregiving
At the societal level, advocacy and legislation for caregivers without access to needed
supportive resources is necessary to address the public health issue of caregiving. Policies that
help to fund new and existing programs could help improve caregiver health, while also
decreasing future healthcare costs. Legislation to protect caregivers in the workplace should to
be proposed and implemented.
95
Conclusion
Cognitive intervention programs for people with MCI have been found to be beneficial
for the person participating. This study sought to evaluate the secondary impact that a cognitive
intervention program for people with MCI had on caregivers. Findings revealed that programs
like the MEP are seen as beneficial to both the caregiver and care recipient. In fact, many
caregivers felt the program was a central component in their lives. Programs like the MEP have
the potential to ameliorate the stressors and strains associated with caregiving. Following the
suggestions provided in this study could help these types of programs to better meet the needs of
caregivers and increase the impact they can have on caregiver health and well-being. These
programs also have the potential to reach caregivers early in their caregiving careers and prevent
negative health outcomes associated with caregiving.
96
APPENDIX A
CAREGIVER INFORMED CONSENT FORM
97
98
99
100
101
102
103
104
105
106
APPENDIX B
PARTICIPANT INFORMED CONSENT FORM
107
108
109
110
111
112
113
114
115
APPENDIX C
SURVEYS
116
117
118
119
120
121
122
123
124
125
LIST OF REFERENCES
Abendroth, M., Lutz, B., & Young, M. (2012). Family caregivers’ decision process to
institutionalize persons with Parkinson's disease: A grounded theory study. International
Journal of Nursing Studies, 49(4), 445–454.
Aguirre, E., Hoare, Z., Streater, A., Spector, A., Woods, B., Hoe, J., & Orrell, M. (2013).
Cognitive stimulation therapy (CST) for people with dementia--who benefits most?
International Journal of Geriatric Psychiatry, 28(3), 284–90.
http://doi.org/10.1002/gps.3823
Aguirre, E., Woods, R. T., Spector, A., & Orrell, M. (2013). Cognitive stimulation for dementia:
a systematic review of the evidence of effectiveness from randomised controlled trials.
Ageing Research Reviews, 12(1), 253–62. http://doi.org/10.1016/j.arr.2012.07.001
Ahn, I. S., Kim, J.-H., Kim, S., Chung, J. W., Kim, H., Kang, H. S., & Kim, D. K. (2009).
Impairment of instrumental activities of daily living in patients with mild cognitive
impairment. Psychiatry Investigation, 6(3), 180–4. http://doi.org/10.4306/pi.2009.6.3.180
Albert, M., DeKosky, S., Dickson, D., Dubois, B., Feldman, H., Fox, N., … Phelps, C. (2011).
The diagnosis of mild cognitive impairment due to Alzheimer’s disease: Recommendations
from the National Institute on Aging-Alzheimer's Association workgroups on. Alzheimer’s
& …, 7(3), 270–279. http://doi.org/10.1016/j.jalz.2011.03.008.The
American Occupational Therapy Association. (2014). Occupational therapy practice framework:
Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl.1),
S1–S48.
Argimon, J. M., Limon, E., Vila, J., & Cabezas, C. (2004). Health-related quality of life in carers
of patients with dementia. Family Practice, 21(4), 454–7.
http://doi.org/10.1093/fampra/cmh418
Alzheimer's Association. (2014). 2014 Alzheimer’s Disease Facts and Figures. Alzheimer’s &
Dementia : The Journal of the Alzheimer's Association, 10(2), 1–80.
Austrom, M., & Lu, Y. (2009). Long term caregiving: helping families of persons with mild
cognitive impairment cope. Current Alzheimer Research, 6(4), 392–398. Retrieved from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862360/
Bartfay, E., & Bartfay, W. J. (2013). Quality-of-life outcomes among Alzheimer’s disease family
caregivers following community-based intervention. Western Journal of Nursing Research,
35(1), 98–116. http://doi.org/10.1177/0193945911400763
126
Belchior, P., Korner-Bitensky, N., Holmes, M., & Robert, A. (2015). Identification and
assessment of functional performance in mild cognitive impairment: A survey of
occupational therapy practices. Australian Occupational Therapy Journal, (March).
http://doi.org/10.1111/1440-1630.12201
Berg-Weger, M. (2003). Assessing the health of adult daughter former caregivers for elders with
Alzheimer’s disease. American Journal of Alzheimer’s Disease and Other Dementias,
18(4), 231–239. http://doi.org/10.1177/153331750301800402
Blieszner, R., & Roberto, K. a. (2010). Care partner responses to the onset of mild cognitive
impairment. The Gerontologist, 50(1), 11–22. http://doi.org/10.1093/geront/gnp068
Bowen, G. A. (2008). Grounded theory and sensitizing concepts. International Journal of
Qualitative Methods, 5(3). Retrieved from http://wigan-
ojs.library.ualberta.ca/index.php/IJQM/article/view/4367
Bradshaw, L. E., Goldberg, S. E., Schneider, J. M., & Harwood, R. H. (2013). Carers for older
people with co-morbid cognitive impairment in general hospital: characteristics and
psychological well-being. International Journal of Geriatric Psychiatry, 28(7), 681–90.
http://doi.org/10.1002/gps.3871
Brown, P. J., Devanand, D. P., Liu, X., & Caccappolo, E. (2011). Functional impairment in
elderly patients with mild cognitive impairment and mild Alzheimer disease. Archives of
General Psychiatry, 68(6), 617–626. http://doi.org/10.1001/archgenpsychiatry.2011.57
Bruscoli, M., & Lovestone, S. (2004). Is MCI really just early dementia? A systematic review of
conversion studies. International Psychogeriatrics, 16(2), 129–140.
http://doi.org/10.1017/S1041610204000092
Burton, C. L., Strauss, E., Bunce, D., Hunter, M. a., & Hultsch, D. F. (2009). Functional abilities
in older adults with mild cognitive Impairment. Gerontology, 55(5), 570–581.
http://doi.org/10.1159/000228918
Centers for Disease Control and Prevention. (2011). Health-Related Quality of Life. Retrieved
from http://www.cdc.gov/hrqol/concept.htm
Charmaz, K. (2006). Constructing Grounded Theory. London: Sage.
Ciro, C. A., Anderson, M. P., Hershey, L. A., Prodan, C. I., & Holm, M. B. (2015). Instrumental
Activities of Daily Living Performance and Role Satisfaction in People With and Without
Mild Cognitive Impairment : A Pilot Project. American Journal of Occupational Therapy,
69(3), 1–10. http://doi.org/10.5014/ajot.2014.015198
Cohen, D., & Crabtree, B. (2008). Evaluative criteria for qualitative research in health care:
controversies and recommendations. The Annals of Family Medicine, 6(4), 331–339.
http://doi.org/10.1370/afm.818.INTRODUCTION
127
Creswell, J. W. (2013). Qualitative Inquiry & Research Design: Choosing Among Five
Approaches (3rd ed.). Los Angeles: Sage.
De Vugt, M. E., & Verhey, F. R. J. (2013). The impact of early dementia diagnosis and
intervention on informal caregivers. Progress in Neurobiology, 110, 54–62.
http://doi.org/10.1016/j.pneurobio.2013.04.005
Dean, K., & Wilcock, G. (2012). Living with mild cognitive impairment: the patient’s and carer's
experience. International Psychogeriatrics / IPA, 24(6), 871–81.
http://doi.org/10.1017/S104161021100264X
Denzin, N. K. (1989). Interpretive Interactionism (2nd ed.). London: Sage Publications.
Diwan, S., Hougham, G. W., & Sachs, G. a. (2004). Strain experienced by caregivers of
dementia patients receiving palliative care: findings from the Palliative Excellence in
Alzheimer Care Efforts (PEACE) Program. Journal of Palliative Medicine, 7(6), 797–807.
http://doi.org/10.1089/jpm.2004.7.797
Eaton, W., Muntaner, C., Smith, C., Tien, A., & Ybarra, M. (2004). Center for Epidemiologic
Studies Depression Scale: Review and revision (CESD and CESD-R). In M. Maruish (Ed.),
The Use of Psychological Testing for Treatment Planning and Outcomes Assessment (3rd
ed., pp. 363–377). Mahwah, NJ: Lawrence Erlbaum.
Elliott, N., & Higgings, A. (2012). Surviving grounded theory research method in an academic
world: Proposal writing and theoretical frameworks. Grounded Theory Review: An
International Journal, 11(2), 1–12.
Garand, L., Dew, M. A., Eazor, L. R., DeKosky, S. T., & Reynolds, C. F. (2005). Caregiving
burden and psychiatric morbidity in spouses of persons with mild cognitive impairment.
International Journal of Geriatric Psychiatry, 20(6), 512–22.
http://doi.org/10.1002/gps.1318
Garand, L., Rinaldo, D., Alberth, M., Delany, J., Beasock, S., Lopez, O., … Dew, M. (2014).
Effects of problem solving therapy on mental health outcomes in family caregivers of
persons with a new diagnosis of mild cognitive impairment or early dementia: a randomized
controlled trial. American Journal of Geriatric Psychiatry2, 22(8), 771–181.
Gerstenecker, A., & Mast, B. (2014). Mild cognitive impairment: a history and the state of
current diagnostic criteria. International Psychogeriatrics / IPA, 1–13.
http://doi.org/10.1017/S1041610214002270
Glaser, B., & Strauss, A. (1967). The Discovery of Grounded Theory. Chicago: Aldine.
Guba, E., & Lincoln, Y. (1989). Fourth Generation Evaluation. Newburg Park, CA: Sage.
128
Guest, G., Bunce, A., & Johnson, L. (2006). How Many Interviews Are Enough? An Experiment
with Data Saturation and Variability. Field Methods, 18(1), 59–82.
Hayashi, S., Terada, S., Nagao, S., Ikeda, C., Shindo, A., Oshima, E., … Uchitomi, Y. (2013).
Burden of caregivers for patients with mild cognitive impairment in Japan. International
Psychogeriatrics / IPA, 25(8), 1357–63. http://doi.org/10.1017/S1041610213000537
Hilgeman, M. M., Durkin, D. W., Sun, F., DeCoster, J., Allen, R. S., Gallagher-Thompson, D., &
Burgio, L. D. (2009). Testing a theoretical model of the stress process in Alzheimer’s
caregivers with race as a moderator. The Gerontologist, 49(2), 248–61.
http://doi.org/10.1093/geront/gnp015
Horr, T., Messinger-Rapport, B., & Pillai, J. a. (2015). Systematic review of strengths and
limitations of randomized controlled trials for non-pharmacological interventions in mild
cognitive impairment: focus on Alzheimer’s disease. The Journal of Nutrition, Health &
Aging, 19(2), 141–53. http://doi.org/10.1007/s12603-014-0565-6
Hoskins, S., Coleman, M., & McNeely, D. (2005). Stress in carers of individuals with dementia
and Community Mental Health Teams: an uncontrolled evaluation study. Journal of
Advanced Nursing, 50(3), 325–33. http://doi.org/10.1111/j.1365-2648.2005.03396.x
Jekel, K., Damian, M., Wattmo, C., Hausner, L., Bullock, R., Connelly, P. J., … Frölich, L.
(2015). Mild cognitive impairment and deficits in instrumental activities of daily living: a
systematic review. Alzheimer’s Research & Therapy, 7(1). http://doi.org/10.1186/s13195-
015-0099-0
Jones, C., Edwards, R. T., & Hounsome, B. (2012). Health economics research into supporting
carers of people with dementia: a systematic review of outcome measures. Health and
Quality of Life Outcomes, 10, 142. http://doi.org/10.1186/1477-7525-10-142
Joosten-Weyn Banningh, L. W., Vernooij-Dassen, M. J. F. J., Vullings, M., Prins, J. B., Rikkert,
M. G. M. O., & Kessels, R. P. C. (2013). Learning to live with a loved one with mild
cognitive impairment: effectiveness of a waiting list controlled trial of a group intervention
on significant others’ sense of competence and well-being. American Journal of
Alzheimer’s Disease and Other Dementias, 28(3), 228–38.
http://doi.org/10.1177/1533317513481093
King, R., Hartke, R., & Houle, T. (2010). Patterns of relationships between background
characteristics, coping, and stroke caregiver outcomes. Topics in Stroke Rehabilitation,
17(4), 308–317. http://doi.org/10.1310/tsr1704-308.Patterns
Langa, K. M., & Levine, D. a. (2014). The Diagnosis and Management of Mild Cognitive
Impairment. Jama, 312(23), 2551. http://doi.org/10.1001/jama.2014.13806
129
Leblanc, a J., Driscoll, a K., & Pearlin, L. I. (2004). Religiosity and the expansion of caregiver
stress. Aging & Mental Health, 8(5), 410–21.
http://doi.org/10.1080/13607860410001724992
Li, H., Li, J., Li, N., Li, B., Wang, P., & Zhou, T. (2011). Cognitive intervention for persons with
mild cognitive impairment: A meta-analysis. Ageing Research Reviews, 10(2), 285–96.
http://doi.org/10.1016/j.arr.2010.11.003
Löckenhoff, C. E., Duberstein, P. R., Friedman, B., & Costa, P. T. (2011). Five-factor
personality traits and subjective health among caregivers: the role of caregiver strain and
self-efficacy. Psychology and Aging, 26(3), 592–604. http://doi.org/10.1037/a0022209
Logsdon, R. G., Gibbons, L., McCurry, S., & Teri, L. (2002). Assessing quality of life in older
adults with cognitive impairment. Psychomatic Medicine, 64(3), 510–519.
Logsdon, R. G., Pike, K. C., Korte, L., & Goehring, C. (2014). Memory Care and Wellness
Services: Efficacy of Specialized Dementia Care in Adult Day Services. The Gerontologist,
00(00), 1–8. http://doi.org/10.1093/geront/gnu012
Lu, Y., Austrom, M. G., Perkins, S. M., Bakas, T., Farlow, M. R., He, F., … Gamst, A. (2007).
Depressed mood in informal caregivers of individuals with mild cognitive impairment.
American Journal of Alzheimer’s Disease and Other Dementias, 22(4), 273–85.
http://doi.org/10.1177/1533317507301367
Lu, Y., & Haase, J. (2009). Experience and perspectives of caregivers of spouse with mild
cognitive impairment. Current Alzheimer Research, 6(4), 384–391. Retrieved from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2867606/
Lu, Y., Haase, J., & Weaver, M. (2014). Pilot Testing a Couples-focused Intervention for Mild
Cognitive Impairment. Journal of Gerontological Nursing, 39(5), 16–23.
Ma, A., & Norwich, B. (2007). Triangulation and theoretical understanding. International
Journal of Social Research Methodology, 10(3), 211–226.
Moon, H., & Dilworth-Anderson, P. (2014). Baby boomer caregiver and dementia caregiving:
findings from the National Study of Caregiving. Age and Ageing, 1–7.
http://doi.org/10.1093/ageing/afu119
Moro, V., Condoleo, M. T., Sala, F., Pernigo, S., Moretto, G., & Gambina, G. (2012). Cognitive
stimulation in a-MCI: an experimental study. American Journal of Alzheimer’s Disease and
Other Dementias, 27(2), 121–30. http://doi.org/10.1177/1533317512441386
Muller, D., Judd, C. M., & Yzerbyt, V. Y. (2005). When moderation is mediated and mediation
is moderated. Journal of Personality and Social Psychology, 89(6), 852–863.
http://doi.org/10.1037/0022-3514.89.6.852
130
Murphy, S. L., Xu, J., & Kochanek, K. D. (2013). National Vital Statistics Reports Deaths : Final
Data for 2010. National Vital Statistics Reports, 61(4). Retrieved from
www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf
Nasreddine, Z., Phillips, N., Bedirian, V., Charbonneau, S., Whitehead, V., Collin, I., &
Chertkow, H. (2005). The Montreal Cognitive Assessment, MoCA: A brief screening tool
for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4), 695–699.
Onega, L. (2008). Helping those who help others: the Modified Caregiver Strain Index. The
American Journal of Nursing, 108(9), 62–69. Retrieved from
http://journals.lww.com/ajnonline/Abstract/2008/09000/Helping_Those_Who_Help_Others
__The_Modified.26.aspx
Paradise, M., McCade, D., Hickie, I. B., Diamond, K., Lewis, S. J. G., & Naismith, S. L. (2014).
Caregiver burden in mild cognitive impairment. Aging & Mental Health, (e-pub ahead of
print), 1–7. http://doi.org/10.1080/13607863.2014.915922
Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Caregiving and the stress process: An
overview of concepts and their measures. The Gerontologist, 30(5), 583–594. Retrieved
from http://gerontologist.oxfordjournals.org/content/30/5/583.short
Perkins, M., Howard, V., Wadley, V., Crowe, M., Safford, M., Haley, W., … Roth, D. (2013).
Caregiving strain and all-cause mortality: evidence from the REGARDS study. The
Journals …, 68(4), 504–512. http://doi.org/10.1093/geronb/gbs084.
Petersen, R. C. (2004). Mild cognitive impairment as a diagnostic entity. Journal of Internal
Medicine, 256(3), 183–94. http://doi.org/10.1111/j.1365-2796.2004.01388.x
Petersen, R. C., Aisen, P., Boeve, B. F., Geda, Y. E., Ivnik, R. J., Knopman, D. S., … Jack, C. R.
(2013). Mild cognitive impairment due to Alzheimer disease in the community. Annals of
Neurology, 74(2), 199–208. http://doi.org/10.1002/ana.23931
Petersen, R. C., Caracciolo, B., Brayne, C., Gauthier, S., Jelic, V., & Fratiglioni, L. (2014). Mild
cognitive impairment: A concept in evolution. Journal of Internal Medicine, 275(3), 214–
228. http://doi.org/10.1111/joim.12190
Petersen, R. C., & Morris, J. (2005). Mild cognitive impairment as a clinical entity and treatment
target. Archives of Neurology, 62(7), 1160–1163.
Pinquart, M., & Sorensen, S. (2007). Correlates of Physical Health of Informal Caregivers: A
Meta-Analysis. The Journals of Gerontology Series B: Psychological Sciences and Social
Sciences, 62(2), P126–P137. http://doi.org/10.1093/geronb/62.2.P126
131
Plassman, B., Langa, K., Fisher, G., Heeringa, S., Weir, D., Ofstedal, M., … Wallace, R. (2008).
Prevalence of cognitive impairment without dementia in the United States. Annals of
Internal …, 148(6), 427–434. Retrieved from
http://annals.org/article.aspx?articleid=740027
Radloff, L. (1977). The CES-D scale: a self-report depression scale for research in the general
population. Applied Psychological Measurement, 1, 385–401.
Reijnders, J., van Heugten, C., & van Boxtel, M. (2013). Cognitive interventions in healthy older
adults and people with mild cognitive impairment: a systematic review. Ageing Research
Reviews, 12(1), 263–75. http://doi.org/10.1016/j.arr.2012.07.003
Reppermund, S., Brodaty, H., Crawford, J. D., Kochan, N. a, Draper, B., Slavin, M. J., …
Sachdev, P. S. (2013). Impairment in instrumental activities of daily living with high
cognitive demand is an early marker of mild cognitive impairment: the Sydney memory and
ageing study. Psychological Medicine, 43(11), 2437–45.
http://doi.org/10.1017/S003329171200308X
Richards, L., & Morse, J. (2013). Readme First For a User’s Guide to Qualitative Methods (3rd
ed.). Los Angeles: Sage.
Richardson, T. J., Lee, S. J., Berg-Weger, M., & Grossberg, G. T. (2013). Caregiver health:
health of caregivers of Alzheimer’s and other dementia patients. Current Psychiatry
Reports, 15(7), 367. http://doi.org/10.1007/s11920-013-0367-2
Roberto, K. a, McCann, B. R., & Blieszner, R. (2013). Trajectories of care: spouses coping with
changes related to mild cognitive impairment. Dementia (London, England), 12(1), 45–62.
http://doi.org/10.1177/1471301211421233
Rodríguez-Bailón, M., Montoro-Membila, N., Garcia-Morán, T., Arnedo-Montoro, M. L., &
Funes Molina, M. J. (2015). Preliminary cognitive scale of basic and instrumental activities
of daily living for dementia and mild cognitive impairment. Journal of Clinical and
Experimental Neuropsychology, (May), 1–15.
http://doi.org/10.1080/13803395.2015.1013022
Ryan, K., Weldon, A., Huby, N. M., Persad, C., Bhaumik, A. K., Heidebrink, J. L., … Giordani,
B. (2010). Caregiver support service needs for patients with mild cognitive impairment and
Alzheimer disease. Alzheimer Disease and Associated Disorders, 24(2), 171–6.
http://doi.org/10.1097/WAD.0b013e3181aba90d
Sachs-Ericsson, N., & Blazer, D. G. (2015). The new DSM-5 diagnosis of mild neurocognitive
disorder and its relation to research in mild cognitive impairment. Aging & Mental Health,
19(1), 2–12. http://doi.org/10.1080/13607863.2014.920303
Sandelowski, M., & Barroso, J. (2003). Classifying the findings in qualitative studies.
Qualitative Health Research, 13(7), 905–923.
132
Savla, J., Granger, D. a, Roberto, K. a, Davey, A., Blieszner, R., & Gwazdauskas, F. (2013).
Cortisol, alpha amylase, and daily stressors in spouses of persons with mild cognitive
impairment. Psychology and Aging, 28(3), 666–79. http://doi.org/10.1037/a0032654
Savla, J., Roberto, K., Blieszner, R., Cox, M., & Gwazdauskas, F. (2011). Effects of daily
stressors on the psychological and biological well-being of spouses of persons with mild
cognitive impairment. … Psychological …, 66(6), 653–664.
http://doi.org/10.1093/geronb/gbr041.
Schulz, R., & Sherwood, P. (2008). Physical and mental health effects of family caregiving. The
American Journal of Nursing, 108(9 Supplement), 23–27.
http://doi.org/10.1097/01.NAJ.0000336406.45248.4c.Physical
Seeher, K., Low, L.-F., Reppermund, S., & Brodaty, H. (2013). Predictors and outcomes for
caregivers of people with mild cognitive impairment: a systematic literature review.
Alzheimer’s & Dementia : The Journal of the Alzheimer's Association, 9(3), 346–55.
http://doi.org/10.1016/j.jalz.2012.01.012
Shenton, A. (2004). Strategies for ensuring trustworthiness in qualitative research projects.
Education for Information, 22, 63–75. http://doi.org/10.1111/j.1744-618X.2000.tb00391.x
Simpson, C., & Carter, P. (2013). Short-term changes in sleep, mastery & stress: impacts on
depression and health in dementia caregivers. Geriatric Nursing (New York, N.Y.), 34(6),
509–516. http://doi.org/10.1016/j.gerinurse.2013.07.002
Springate, B., & Tremont, G. (2012). Caregiver Burden and Depression in Mild Cognitive
Impairment. Journal of Applied Gerontology, 32(6), 765–775.
http://doi.org/10.1177/0733464811433486
Strauss, A., & Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory Procedures
and Techniques. Newbury Park, CA: Sage.
Sun, F., & Hodge, D. R. (2014). Latino Alzheimer’s disease caregivers and depression: using the
stress coping model to examine the effects of spirituality and religion. Journal of Applied
Gerontology : The Official Journal of the Southern Gerontological Society, 33(3), 291–315.
http://doi.org/10.1177/0733464812444462
Talley, R., & Crews, J. (2007). Framing the public health of caregiving. American Journal of
Public Health, 97(2), 224–229. http://doi.org/10.2105/AJPH.2004
Taylor, B., & de Vocht, H. (2011). Interviewing Separately or as Couples? Considerations of
Authenticity of Method. Qualitative Health Research, 21(11), 1576–1587.
http://doi.org/10.1177/1049732311415288
133
Thies, W., & Bleiler, L. (2013). 2013 Alzheimer’s disease facts and figures. Alzheimer’s &
Dementia : The Journal of the Alzheimer's Association, 9(2), 208–45.
http://doi.org/10.1016/j.jalz.2013.02.003
Thornton, M., & Travis, S. S. (2003). Analysis of the reliability of the modified caregiver strain
index. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences,
58(2), S127–32. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12646602
Tooth, L., McKenna, K., Barnett, a, Prescott, C., & Murphy, S. (2005). Caregiver burden, time
spent caring and health status in the first 12 months following stroke. Brain Injury : [BI],
19(12), 963–74. http://doi.org/10.1080/02699050500110785
Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical
health? A meta-analysis. Psychological Bulletin, 129(6), 946–72.
http://doi.org/10.1037/0033-2909.129.6.946
Wang, C., Wang, H., Tan, C., Meng, X., & Tan, L. (2014). Non-Pharmacological Interventions
for Patients with Mild Cognitive Impairment: A Meta-Analysis of Randomized Controlled
Trials of Cognition-Based and Exercise Interventions. Journal of Alzheimer’s Disease, (e-
pub ahead of print). http://doi.org/10.3233/JAD-140660
Ward, A., Arrighi, H. M., Michels, S., & Cedarbaum, J. M. (2012). Mild cognitive impairment:
disparity of incidence and prevalence estimates. Alzheimer’s & Dementia : The Journal of
the Alzheimer's Association, 8(1), 14–21. http://doi.org/10.1016/j.jalz.2011.01.002
Ware, J., Snow, K., Kosinski, M., & Gandek, B. (1993). SF-36 Health Survey-manual and
interpretation guide. Boston: The Health Institute.
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BIOGRAPHICAL SKETCH
Julie Watson earned her Bachelor of Science degree in psychology from the University of
Maryland in 2000. She received her Master of Occupational Therapy degree from the University
of St. Augustine in 2002. In 2008, she received her Master of Health Science with a major in
occupational therapy from the University of Florida. In 2011, she joined the doctoral program in
the Behavioral Science and Community Health Department in the College of Public Health and
Health Professions at the University of Florida.
Dr. Watson has over 13 years of clinical experience working as an occupational therapist.
She works as a full time faculty member at the University of St. Augustine for Health Sciences in
St. Augustine, FL. Her dissertation, An Evaluation of a Memory Enhancement Program for
People with Mild Cognitive Impairments on Family Caregiver Outcomes, was supervised by Dr.
Mary Ellen Young.