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Tele-Mindfulness for Dementia's Family Caregivers: a Randomized Trial with a Usual Care Control Group
by
Shadi Zarei
A thesis submitted in conformity with the requirements for the degree of Master of Science
Institute of Medical Science University of Toronto
© Copyright by Shadi Zarei (2018)
ii
Tele-Mindfulness for Dementia's Family Caregivers: A
Randomized Trial with a Usual Care Comparison Group
Shadi Zarei
Master of Science
Institute of Medical Science University of Toronto
2018
Abstract
Caring for a family member with dementia is associated with chronic stress which can
have negative effects on caregivers’ mental and physical health. Mindfulness-based
interventions have been proposed to improve psychological outcomes in
caregivers. The purpose of this study was to evaluate the feasibility and effectiveness of
live online mindfulness (tele-MBCT) program for caregivers of people with dementia. 26
family caregivers were randomly assigned to a tele-MBCT intervention or control group.
Intervention participants attended eight weekly live online training and practiced at
home. All participants completed surveys at baseline, post-intervention and 4-week
follow-up. Majority of participants completed the study. Intervention group reported high
satisfaction with the intervention and the online delivery method. Pre-Post improvement
in self-compassion and coping strategies in the intervention group were noted. Tele-
MBCT is a feasible intervention and may improve psychological outcomes and adaptive
coping in dementia’s family caregivers. A larger controlled trial is warranted.
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Acknowledgments
Firstly, I would like to express my sincere gratitude to my supervisor Dr. Joel
Sadavoy for the continuous support of my MSc project, for his patience, motivation, and
immense knowledge. His guidance helped me in all the time of research and writing of
this thesis. His support and wise words motivated me to continue despite the obstacles I
faced in this project over the last 2.5 years. He consistently allowed this project to be my
own work, but steered me in the right the direction whenever he thought I needed it. I
could not have imagined having a better supervisor and mentor for my MSc study.
Besides my supervisor, I would like to thank my advisory committee members: DR.
Carmela Tartaglia and Dr. Brenda Toner, for their insightful comments, encouragement
and also for the challenging questions which incented me to widen my research and
increase my knowledge from various perspectives.
My sincere thanks also goes to Gita Lakhanpal for training the participants and Reitman
center amazing team, Dr. Rhonda Fledman, Jennifer Carr, Sarah Gillespie, Cheryl
Miller, Jenny Carlson, Einat Danieli who helped me a lot with the recruitment. Without
the support and help of them, this project could have not be done. Also I thank all the
members of the ENRICHES project for their help with the recruitment.
A special thanks goes to Anne-Marie Vico at Reitman center for her kindness and
support whenever I was stressed and for all the fun discussions we have had in the last
2.5 years. Also I am thankful to Dr. Virginia Wesson, Dr. Robert Maunder for their
valuable consultations in different phases of this project.
I am grateful to all the participants who have volunteered to take part in this project.
Without their kindness and help, this project would never be possible. I also would like
to thank Institute of Medical Science for providing me with the opportunity to learn from
the best and brightest minds in the world.
Last but not the least, I would like to thank my family: my parents and to my sisters for
supporting me spiritually throughout my Master’s study. I am also thankful to my very
best friend, Mohadeseh Mehrabian for her unconditional support, motivational and
hopeful conversations throughout my thesis writing and my life in general.
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And most of all, I am incredibly grateful to my wonderful lovely husband, Foad. He is
without a doubt, the greatest friend and spouse anyone could ever imagine. I am
especially thankful to Foad for believing in me and motivating me through every single
step of life.
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Table of Contents
Acknowledgments ............................................................................................................. iii
Table of Contents ............................................................................................................... v
List of Tables ..................................................................................................................... ix
List of Figures .................................................................................................................... x
List of Appendices ............................................................................................................. xii
Abbreviations .................................................................................................................. xiii
Chapter 1: Introduction .................................................................................................... 1
1.1.1 Background and Context ......................................................................................... 2
1.1.2 Primary Stressors.................................................................................................... 3
1.1.3 Secondary Stressors ................................................................................................ 4
1.2.1 Alzheimer’s disease ................................................................................................ 7
1.2.2 Vascular dementia (VD) .......................................................................................... 9
1.2.3 Dementia with Lewy bodies (DLB) ......................................................................... 11
1.2.4 Frontotemporal dementia (FTD) ............................................................................ 12
1.2.5 Progressive supranuclear palsy (PSP) ..................................................................... 14
1.6.1 Mindfulness-based cognitive therapy (MBCT) ........................................................ 36
1.6.1.1 Modes of mind ............................................................................................ 37
1.6.1.1.1 Doing mode ................................................................................................ 37
1.6.1.1.2 Being mode ................................................................................................. 38
1.6.2 Features of MBCT ................................................................................................. 40
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1.6.3 Benefits of mindfulness ........................................................................................ 42
1.7.1 Mindfulness studies among dementia CGs ............................................................. 47
Chapter 2: Hypotheses and Research Aims ..................................................................... 51
Chapter 3: Design and methods...................................................................................... 53
3.1.1 Inclusion Criteria .................................................................................................. 53
3.1.2 Exclusion Criteria .................................................................................................. 54
3.2.1 ENRICHES project ................................................................................................. 55
3.2.2 Collaborating Institutions (memory clinics) ............................................................ 55
3.2.3 Online advertisement ........................................................................................... 55
3.2.4 Flyer and Brochure ............................................................................................... 56
3.2.5 Word of mouth .................................................................................................... 56
3.3.1 Sample size .......................................................................................................... 57
3.3.2 Telephone screening ............................................................................................. 57
3.3.3 Randomization ..................................................................................................... 57
3.3.4 Informed Consent and Pre-intervention assessment (V1) ........................................ 58
3.3.5 Post-intervention assessment (second visit V2) ...................................................... 58
3.3.6 Follow-up assessment (third visit V3) ..................................................................... 58
3.3.7 Reimbursement .................................................................................................... 58
3.4.1 Tele-MBCT group .................................................................................................. 60
3.4.1.1 The online technology: Zoom ....................................................................... 60
3.4.1.2 Zoom training .............................................................................................. 61
3.4.1.3 Mindfulness Package ................................................................................... 61
3.4.1.4 Tele-MBCT instructor ................................................................................... 62
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3.4.1.5 Online interview with the instructor ............................................................. 63
3.4.1.6 Tele-MBCT training ...................................................................................... 63
3.4.2 Control group ....................................................................................................... 67
3.5.1 Feasibility assessment ........................................................................................... 67
3.5.1.1 Satisfaction Questionnaire ........................................................................... 67
3.5.2 Psychological outcome measures .......................................................................... 68
3.5.2.1 Stress .......................................................................................................... 68
3.5.2.2 Depression .................................................................................................. 68
3.5.2.3 Anxiety ....................................................................................................... 69
3.5.2.4 Coping ........................................................................................................ 69
3.5.2.5 Self-Compassion .......................................................................................... 70
3.5.3 Other measures .................................................................................................... 70
3.5.3.1 Screening questionnaire .............................................................................. 70
3.5.3.2 Single-item measure of self-perceived stress ................................................. 71
3.5.3.3 Neuropsychiatric symptoms ......................................................................... 71
Chapter 4: Results .......................................................................................................... 74
4.2.1 Recruitment and retention rate ............................................................................. 76
4.2.2 Participants’ attendance ....................................................................................... 78
4.2.3 Daily Practice ....................................................................................................... 79
4.2.4 Satisfaction .......................................................................................................... 81
4.2.4.1 Satisfaction Questionnaire: part 1 ................................................................ 81
4.2.4.2 Satisfaction questionnaire: part 2 ................................................................. 83
4.2.5 Instructor’s feedback ............................................................................................ 87
4.2.5.1 Strengths .................................................................................................... 88
4.2.5.1.1 Group homogeneity .................................................................................... 88
4.2.5.1.2 Workbook …………………………………………………………………………………………… .. 88
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4.2.5.1.3 Individual online intake .............................................................................. 88
4.2.5.1.4 Online technology ....................................................................................... 88
4.2.5.2 Challenges .................................................................................................. 89
4.2.5.2.1 Online technology ....................................................................................... 89
4.2.5.2.2 Time ............................................................................................................ 89
4.3.1 CR symptoms and CG distress................................................................................ 90
4.3.2 Stress ................................................................................................................... 91
4.3.3 Depression ........................................................................................................... 99
4.3.4 Anxiety ................................................................................................................ 99
4.3.5 Self-Compassion ................................................................................................. 100
4.3.6 Coping ............................................................................................................... 101
Chapter 5: General Discussion and Future Direction ...................................................... 104
References ............................................................................................................................... 114
Appendices .............................................................................................................................. 141
Appendix 6: Copyright Acknowledgements…………………………………………………………………………....155
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List of Tables
Table 1 Summary of meta-analysis and reviews of interventions for family CGs ...................... 22
Table 2 The content of the tele-MBCT sessions ....................................................................... 65
Table 3 Participants characteristics .......................................................................................... 75
Table 4 Satisfaction questionnaire, part 1 ................................................................................. 82
Table 5 Satisfaction questionnaire, part 1: online technology and the book .............................. 83
Table 6 Comparison of two groups on the severity of CR symptoms and CG distress .............. 90
Table 7 Perceived stress, comparison of two groups................................................................ 92
Table 8 Post hoc correlational analysis of both groups combined, Perceived Stress Scale (PSS)
and the Self-Compassion Scale (SCS) subscales .................................................................... 92
Table 9 Depression, comparison of two groups ........................................................................ 99
Table 10 Anxiety, comparison between two groups ................................................................ 100
Table 11 Self-compassion, comparison between two groups ................................................. 101
Table 12 Emotional-oriented coping, comparison between two groups .................................. 103
Table 13 Task-oriented coping, comparison between two groups .......................................... 103
Table 14 Avoidance-oriented coping, comparison between two groups ................................. 103
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List of Figures
Figure 1 International consensus criteria for behavioural variant FTD. ..................................... 13
Figure 2 Basic features of PSP Criteria. ................................................................................... 15
Figure 3 Flow diagram of the study .......................................................................................... 59
Figure 4 Practice log ................................................................................................................ 62
Figure 5 Flow of recruitment and retention ............................................................................... 76
Figure 6 Attendance, 84% of the participants in the intervention group attended at least 7 sessions ................................................................................................................................... 78
Figure 7 Tele-MBCT participants practiced mindfulness techniques 36.65 ± 43.74 minutes (on average) daily during their training ........................................................................................... 80
Figure 8 A significant positive correlation between daily practice and self-compassion change (r = 0.65, p = 0.04) ....................................................................................................................... 80
Figure 9 Severity of CR symptoms had a significant positive correlation with CG distress (r = 0.81, p < 0.0001) ...................................................................................................................... 90
Figure 10 A significant positive correlation between stress and depression scores at pre-intervention assessment (r = 0.63, p < 0.001)........................................................................... 93
Figure 11 A significant positive correlation between stress and depression scores at post-intervention assessment (r = 0.77, p < 0.0001) ......................................................................... 93
Figure 12 A significant positive correlation between stress and depression scores at follow-up assessment (r = 0.74, p < 0.0001) ............................................................................................ 94
Figure 13 A significant positive correlation between stress and anxiety scores at pre-intervention assessment (r = 0.56, p = 0.003) .............................................................................................. 94
Figure 14 A significant positive correlation between stress and anxiety scores at post-intervention assessment (r = 0.61, p = 0.001)........................................................................... 95
Figure 15 A significant positive correlation between stress and anxiety scores at follow-up assessment (r = 0.79, p < 0.0001) ............................................................................................ 95
Figure 16 A significant negative correlation between stress and self-compassion scores at pre-intervention assessment (r = -0.61, p = 0.001) ......................................................................... 96
Figure 17 A significant negative correlation between stress and self-compassion scores at post-intervention assessment (r = -0.65, p = 0.001) ......................................................................... 96
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Figure 18 A significant negative correlation between stress and self-compassion scores at follow-up assessment (r = -0.59, p = 0.002) ............................................................................. 97
Figure 19 A significant positive correlation between stress and emotional-oriented coping scores at pre- intervention assessment (r = 0.58, p = 0.005) ............................................................... 97
Figure 20 A significant positive correlation between stress and emotional-oriented coping scores at post- intervention assessment (r = 0.45, p = 0.02) ................................................................ 98
Figure 21 A significant positive correlation between stress and emotional-oriented coping scores at follow-up assessment (r = 0.63, p = 0.001). .......................................................................... 98
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List of Appendices
Appendix 1: Satisfaction Questionnaire .................................................................................. 141
Appendix 2: Screening Questionnaire .................................................................................... 143
Appendix 3: Figures of correlations between attendance and psychological outcomes change
(post- pre) .............................................................................................................................. 148
Appendix 4: Figures of correlations between daily pracyice and psychological outcomes change
(post- pre) .............................................................................................................................. 151
Appendix 5: Satement of Contribution .................................................................................. 1414
Appendix 2: Copyright Acknowledgement ............................................................................ 1435
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Abbreviations
ACT Acceptance and Commitment Therapy
AD Alzheimer’s Disease
ADL Activities of Daily Living
ADRD Alzheimer’s Disease and Related Disorders
BPSD Behavioural and Psychological Symptoms of Dementia
bvFTD Behavioural Variant Frontotemporal Dementia
CAMH Centre for Addiction and Mental Health
CBT Cognitive Behavioural Therapy
CCAC Community Care Access Centre
CD Compact Disc
CES-D Center for Epidemiologic Studies Depression Scale
CG Caregiver
CI Confidence Interval
CISS-SF Coping Inventory for Stressful Situations- Short Form
CR Care-Recipient
DBT Dialectical Behaviour Therapy
DLB Dementia with Lewy Bodies
ENRICHES Engagement to Reduce Isolations of Caregivers at Home and
Enhancing Seniors
fMRI Functional Magnetic Resonance Imaging
FTD Frontotemporal Dementia
GP General Physician
IADL Instrumental Activities of Daily Living
IT Information Technology
MBCT Mindfulness-Based Cognitive Therapy
MBSR Mindfulness-Based Stress Reduction
N, n Number
NPI-Q Neuropsychiatric Inventory- Questionnaire
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PNFA Primary Nonfluent Progressive Aphasias
PSP Progressive Supranuclear Palsy
PSS Perceived Stress Scale
PSW Personal Support Worker
RCT Randomized Controlled Trial
REACH Resources For Enhancing Alzheimer’s Caregiver Health
REB Research Ethics Board
SCS Self-Compassion Scale
STAI-S State-Trait Anxiety Inventory- State Subscale
TRI Toronto Rehabilitation Institute
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Chapter 1
Introduction
Family caregiving refers to unpaid assistance and activities provided by family
members for family members or friends who are not capable of providing for
themselves. The care provided is multidimensional, complex and often long-term
(Burgio, Gaugler, and Hilgeman 2016; Gitlin and Schulz 2012; Schulz and Sherwood
2008; Robison et al. 2009). Family caregivers (CG) of those with dementia disorders
provide a broad range of help and assistance with activities of daily living (ADL) and
instrumental activities of daily living (IADL), management of disease-specific
manifestations, supervision, medication, appointments management and a variety of
other activities (Gitlin and Schulz 2012; Schulz and Martire 2004).
Taking care of someone with dementia is one of the most difficult, frustrating and
stressful among all caregiving roles. The long duration of dementia disorders,
progressive evolving nature of symptoms, heavier care demands causes dementia
caregiving to be significantly demanding. According to the Canada Health Report which
used the 2010/2011 Canadian Community Health Survey, the 2011/2012 Survey of
Neurological Conditions in Institutions in Canada, and the 2011 Survey on Living with
Neurological Conditions in Canada (Wong, Gilmour, and Ramage-Morin 2016), 85% of
those with dementia rely on assistance from their CGs. According to this report, CGs
provide a wide range of assistance for individuals with dementia including health-related
services such as taking medicine or nursing care (81%); housework, home maintenance
or outdoor work (83%); meal preparation or delivery (88%); emotional support (90%);
transportation including trips to the doctor or shopping (92%); managing care such as
making appointments or managing personal finances (92%) and help with personal care
such as eating, dressing, bathing or toileting (58%) (Wong, Gilmour, and Ramage-Morin
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2016). The Canada Health Report also reported that people with dementia often have
concurrent medical conditions when compared to people without dementia, increasing
their need for assistance and making caregiving responsibilities more complicated
(Wong, Gilmour, and Ramage-Morin 2016). In addition, among individuals with chronic
health conditions, those with dementia were 15 years older than those without
dementia, which made them more likely to develop a group of age-related disorders.
Hospital admissions occur more often in older adults with dementia than those without
because they are at increased risk for hospitalization, circulatory, genitourinary,
infectious, neurological, and respiratory disorders (Wong, Gilmour, and Ramage-Morin
2016; Rycroft and Giovannetti 2017).
1.1 Dementia caregiving and stress
Taking care of a family member with dementia can result in negative emotional,
social, psychological, and physical health problems (Pearlin et al. 1990; Burgio,
Gaugler, and Hilgeman 2016). Pearlin’s Stress Process Model provides a helpful
framework for the stress of caregiving (Pearlin et al. 1990).
Pearlin’s Stress Process has four main dimensions: 1. background and context,
2. primary stressors, 3. secondary stressors, and 4. Mediators (Pearlin et al. 1990).
1.1.1 Background and Context
Background and context include the initial status of CG and care-recipient (CR)
including their sociodemographic features and health which can influence stressors and
access to personal and social resources. Included here are age, gender, ethnicity,
educational, occupational, and economic status. These factors can determine where the
people stand in the societal order and may determine the unequal distribution of
privileges, opportunities, and responsibilities among CGs (Pearlin et al. 1990).
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1.1.2 Primary Stressors
Primary stressors include objective CR’s needs such as cognitive status,
problematic behaviour, ADL and IADL dependencies, and subjective reactions of CGs
such as burnout and relational deprivation. Primary stressors emerge from the needs of
the CR and the amount and type of care these needs demand. Primary stressors
include the severity of the CR’s cognitive impairment, frequency of behavioural and
psychological symptoms of dementia (BPSD) and problematic behavior (including
apathy, aggression, wandering, inappropriate social behavior, paranoia, and agitation).
Primary stressors also include range and difficulty of the CG’s responsibilities, number
of hours spent providing help with activities of daily living, IADL at earlier phases of the
disease and ADL as the disease progresses. IADL includes activities such as cleaning
and maintaining the house, managing money, moving within the community, preparing
meals, shopping for groceries and necessities, taking prescribed medications and using
the telephone or other forms of communication. ADL includes activities such as bathing
and showering, personal hygiene and grooming dressing and toilet hygiene (getting to
the toilet, cleaning oneself, and getting back up), functional mobility (ability to walk, get
in and out of bed, get into and out of a chair and self-feeding), providing assistance with
medical needs of the patient (such as negotiating to health care system, assistance with
managing and going to medical appointments, administrating medication and making
medical decisions) are other forms of primary stressors (Pearlin et al. 1990; Schulz and
Martire 2004). Another primary stressor is relational deprivation experienced by the CG.
As the dementia disorder progresses, the CR’s dependence on the CG increases and
the quality of the relationship between CG and CR declines. The shared intimacy
between the CG and the CR and the shared goal and social activities diminishes.
Eventually, the CG ends up in a one-way relationship with her/his CR.
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1.1.3 Secondary Stressors
Pearlin’s “Secondary stressors” are the consequence of the primary stressors.
Family conflict that is disagreement between the primary CG and other family members
about sharing the responsibilities, providing assistance with different tasks and finding
the best way to address caregiving challenges are examples of secondary stressors.
Other secondary stressors are job-related difficulties including missing work, lack of
energy and preoccupation at work and missing new career opportunities and
promotions. In order to meet caregiving responsibilities, employed CGs need to make
adjustments to their social and work lives, change their future plans, deal with emotional
and physical demands of caregiving while managing family/work challenges and coping
with the unpredictable disease (Duxbury, Schroeder, and Higgins 2009).
Maintaining work-life balance with caregiving responsibilities is a significant
challenge for CGs. According to Murphy and colleagues (1997) “conflicted workers” are
those maintaining their work roles in the face of adverse effects due to caregiving.”
These “conflicted workers” are particularly stressed. Indicators of work-caregiving
conflict include: being repeatedly interrupted at work, having less energy for work, being
less productive/efficient at work, having to reduce hours or take unpaid leave, having to
take a less responsible job, or having to quit work entirely (Duxbury, Schroeder, and
Higgins 2009). Work-caregiving conflict varies based on CR disease severity, caregiving
hours and living arrangements (Duxbury, Schroeder, and Higgins 2009). Sandwich CGs
particularly are at increased risk of negative consequences due to their dual role
(Fredriksen and Scharlach 1999). This group of CGs have extra responsibilities in
addition to their CG role which put them in a more stressful situation compared to
workers without a CR (C. Williams 2004).
The economic impact of caregiving which includes money that is job-related, out
of pocket and/or unpaid labour can be secondary stressors (Pearlin et al. 1990;
Duxbury, Schroeder, and Higgins 2009). Caring for an individual with dementia invites
caregiving-related expenses including payment for care services, prescriptions,
adaptive equipment, renting medical equipment and home modifications, paying for
adjustable beds, convenience foods, transportation services and/or payment for the
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delivery of services. Missing career-related opportunities can result in reduced income
and job benefits and increasing expenditures due to caregiving- and care-related
expenses can impact financial status of the CG (Duxbury, Schroeder, and Higgins
2009). As the disease progresses, caregiving responsibilities escalate which leaves
CGs with less time for recreation and social activities. As a result, the CG becomes
socially constricted which can have negative influences on mental and physical health.
1.2 Major Neurocognitive disorder (formerly dementia)
Major Neurocognitive disorder (American Psychiatric Association 2013) is
defined as “an acquired, generalized, and (usually) progressive impairment of cognitive
function associated with impairment in ADLs/IADLs” with “a significant cognitive decline
from a previous level of performance in one or more cognitive domains (complex
attention, executive function, learning and memory, language, perceptual-motor, or
social cognition) based on:
A) concern of the individual or a knowledgeable informant AND
B) a substantial impairment in cognitive performance either documented by
standardized neuropsychological testing, or quantified clinical assessment” (American
Psychiatric Association 2013).
Major neurocognitive disorder (dementia) has many causes. McKhann and
colleagues (2011) developed core clinical criteria for all-cause dementia. Core clinical
criteria for all-cause dementia:
“Dementia is diagnosed when there are cognitive or behavioral (neuropsychiatric)
symptoms that:
1. Interfere with the ability to function at work or at usual activities; and
2. Represent a decline from previous levels of functioning and performing; and
3. Are not explained by delirium or major psychiatric disorder;
4. Cognitive impairment is detected and diagnosed through a combination of (1)
history-taking from the patient and a knowledgeable informant and (2) an objective
6
cognitive assessment, either a “bedside” mental status examination or
neuropsychological testing. Neuropsychological testing should be performed when
the routine history and bedside mental status examination cannot provide a
confident diagnosis.
5. The cognitive or behavioral impairment involves a minimum of two of the following
domains:
a. Impaired ability to acquire and remember new information––symptoms
include: repetitive questions or conversations, misplacing personal belongings,
forgetting events or appointments, getting lost on a familiar route.
b. Impaired reasoning and handling of complex tasks, poor judgment– symptoms
include: poor under- standing of safety risks, inability to manage finances, poor
decision-making ability, inability to plan complex or sequential activities.
c. Impaired visuospatial abilities––symptoms include inability to recognize faces
or common objects or to find objects in direct view despite good acuity, inability
to operate simple implements, or orient clothing to the body.
d. Impaired language functions (speaking, reading, writing)––symptoms include:
difficulty thinking of common words while speaking, hesitations; speech, spelling,
and writing errors.
e. Changes in personality, behavior, or comportment–– symptoms include:
uncharacteristic mood fluctuations such as agitation, impaired motivation, initiative,
apathy, loss of drive, social withdrawal, decreased interest in previous activities, loss
of empathy, compulsive or obsessive behaviors, social unacceptable behaviors”.
Criteria from “The diagnosis of dementia due to Alzheimer’s disease:
Recommendations from the National Institute on Aging-Alzheimer’s Association
workgroups on diagnostic guidelines for Alzheimer’s disease” by Mckhann and
colleagues, 2011, Alzheimer’s & Dementia, 7, p. 265. Copyright 2011 by Elsevier.
Adapted with permission.
The most common causes of major neurocognitive disorder are Alzheimer’s
disease (AD), Vascular Dementia (VD), Dementia with Lewy Bodies (DLB), and
Frontotemporal dementia (FTD) (Rycroft and Giovannetti 2017); other causes include
traumatic brain injury, normal pressure hydrocephalus, substance/medication use, HIV
7
infection, prion disease, parkinson’s disease, huntington’s disease, and other medical
conditions, multiple etiologies, and unspecified (American Psychiatric Association
2013).
Understanding the various types of dementia and their symptoms is an important
component in understanding the nature and variety of stressors and demands faced by
family CGs as they attempt to cope with these diseases on their own at home.
1.2.1 Alzheimer’s disease
AD is the most common cause of dementia and accounts for 60% to 80% of all
cases (Alzheimer’s disease facts and figures 2015). The underlying pathological
process of AD is an accumulation of beta-amyloid plaques and neurofibrillary tangles.
Clinical criteria for AD diagnosis include:
“1. The individual meets criteria for dementia described earlier in the text, and in
addition, has the following characteristics:
A. Insidious onset. Symptoms have a gradual onset over months to years, not
sudden over hours or days;
B. Clear-cut history of worsening of cognition by report or observation; and
C. The initial and most prominent cognitive deficits are evident on history and
examination in one of the following categories.
a. Amnestic presentation: It is the most common syndromic presentation of AD
dementia. The deficits should include impairment in learning and recall of
recently learned information. There should also be evidence of cognitive
dysfunction in at least one other cognitive domain, as defined earlier in the
text.
b. Nonamnestic presentations:
Language presentation: The most prominent deficits are in word-finding, but
deficits in other cognitive domains should be present.
Visuospatial presentation: The most prominent deficits are in spatial
cognition, including object agnosia, impaired face recognition,
8
simultanagnosia, and alexia. Deficits in other cognitive domains should be
present.
Executive dysfunction: The most prominent deficits are impaired reasoning,
judgment, and problem solving. Deficits in other cognitive domains should
be present.
D. The diagnosis of probable AD dementia should not be applied when there is
evidence of (a) substantial concomitant cerebrovascular disease, defined by a
history of a stroke temporally related to the onset or worsening of cognitive
impairment; or the presence of multiple or extensive infarcts or severe white matter
hyperintensity burden; or (b) core features of Dementia with Lewy bodies other
than dementia itself; or (c) prominent features of behavioral variant frontotemporal
dementia; or (d) prominent features of semantic variant primary progressive
aphasia or non-fluent/agrammatic variant primary progressive aphasia; or (e)
evidence for another concurrent, active neurological disease, or a non-neurological
medical comorbidity or use of medication that could have a substantial effect on
cognition.”(McKhann et al. 2011).
Criteria from “The diagnosis of dementia due to Alzheimer’s disease:
Recommendations from the National Institute on Aging-Alzheimer’s Association
workgroups on diagnostic guidelines for Alzheimer’s disease” by Mckhann and
colleagues, 2011, Alzheimer’s & Dementia, 7, p. 265-266. Copyright 2011 by
Elsevier. Adapted with permission.
As mentioned in the criteria, cognitive symptoms of AD consist of progressive
decline in various domains, including memory, executive function, judgment, language,
comprehension, and visuospatial function. AD patients develop anterograde amnesia
meaning they cannot learn new things. They also exhibit episodic memory impairment
which means not remembering personal facts. Later on, AD patients develop anomia,
empty speech and receptive difficulties which affect their comprehension abilities during
a conversation. Individuals with AD also experience visuospatial difficulties that result in
problems with visual attention and visual memory, difficulty with learning, reading, and
perception of objects and faces. AD patients also exhibit a range of neuropsychiatric
9
symptoms. These symptoms include apathy, anxiety, depressed mood, hallucinations,
and delusions, as well as behavioural manifestations such as aggression, restlessness,
sleep disturbance, agitation, wandering, culturally inappropriate behaviours, sexual
disinhibition, hoarding, cursing, and shadowing (Rycroft and Giovannetti 2017).
Symptoms mentioned above are referred to as behavioural and psychological
symptoms of dementia (BPSD) which occur in the majority of persons with different
subtypes of major neurocognitive disorders over the course of the disease and cause a
heavy burden on the CG. Physical symptoms can include balance impairment, difficulty
swallowing and mobility impairment. Dementia patients are at increased risk of falling.
Different factors play a role including leg weakness, gait and balance impairments, and
functional impairment, visual impairment, hypotension, cognitive impairment, and
medication use (Rycroft and Giovannetti 2017).
1.2.2 Vascular dementia (VD)
Vascular dementia which was formerly known as multi-infarct or post-stroke
dementia is a group of heterogeneous brain disorders caused by cerebrovascular
diseases involving multiple or specifically localized infarctions, ischemic events, or
haemorrhage which can happen in different parts of the brain (Rycroft and Giovannetti
2017). The diagnostic criteria for VD according to DSM-5 (American Psychiatric
Association 2013) include:
A. “The criteria are met for major or mild neurocognitive disorder.
B. The Clinical features are consistent with a vascular etiology, as suggested by
either of the following:
1. Onset of the cognitive deficits is temporally related to one or more
cerebrovascular events.
2. Evidence for decline is prominent in complex attention (including processing
speed) and frontal-executive function.
10
C. There is evidence of presence of cerebrovascular disease from history, physical
examination, and/or neuroimaging considered sufficient to account for the
neurocognitive deficits.
D. The symptoms are not better explained by another brain disease or systemic
disorder.
Probable vascular neurocognitive disorder is diagnosed if one of the following is
preset; otherwise possible vascular neurocognitive disorder should be diagnosed:
1. Clinical criteria are supported by neuroimaging evidence of significant
parenchymal injury attributed to cerebrovascular disease (neuro-imaging
supported).
2. The neurocognitive syndrome is temporally related to one or more documented
cerebrovascular events.
3. Both clinical and genetic (e.g., cerebral autosomal dominant arteriopathy with
subcortical infarcts and leukoencephalopathy) evidence of cerebrovascular
disease is present.
Possible vascular neurocognitive disorder is diagnosed if the clinical criteria are met
but neuroimaging is not available and temporal relationship to the neurocognitive
syndrome with one or more cerebrovascular events is not established. “
Symptoms of VD range from subtle deficits to full-scale dementia according to
the severity and the affected region of the cerebrovascular event. VD is less common as
the sole cause of major neurocognitive disorders, being 10% of cases (Iadecola 2013).
However, VD is very common in older people with major neurocognitive disorder- about
50 percent of these individuals show pathologic evidence of VD (infarcts). In most
cases, the infarcts coexist with Alzheimer’s pathology or other subtypes of dementia
which then is referred as mixed dementia (Alzheimer’s disease facts and figures 2015).
Mixed dementia accounts for a significant proportion of dementia, with about half
of individuals having pathologic evidence of more than one cause of dementia. The
most common concurrent pathologies are Alzheimer’s combined with VD, followed by
AD with DLB, and VD with DLB. Mixed dementia of VD with DLB is the least common
(Alzheimer’s disease facts and figures 2015; Langa, Foster, and Larson 2004).
11
1.2.3 Dementia with Lewy bodies (DLB)
Dementia with Lewy bodies (DLB) is thought by some to be the third leading
cause of degenerative dementia in older people after AD and VD (I. McKeith et al.
2004). The neuropathological basis for DLB involves cell loss and the presence of Lewy
bodies, made up of alpha-synuclein aggregates that develop inside nerve cells in the
limbic system and neocortex (Rycroft and Giovannetti 2017). The diagnostic criteria for
dementia with Lewy bodies according to DSM-5 (American Psychiatric Association
2013) include:
E. " The criteria are met for major or mild neurocognitive disorder.
F. The disorder has an insidious onset and gradual progression.
G. The disorder meets a combination of core diagnostic features and suggestive
diagnostic features if either probable or possible neurocognitive disorder with
Lewy bodies.
For probable major or mild neurocognitive disorder with Lewy bodies, the
individuals has two core features, or one suggestive feature with one or more
core features.
For possible major or mild neurocognitive disorder with Lewy bodies, the
individuals has only one core feature, or one or more suggestive features.
1. Core diagnostic features:
a. Fluctuating cognition with pronounced variations in attention and
alertness.
b. Recurrent visual hallucinations that are well format and detailed.
c. Spontaneous features of parkinsonism, with onset subsequent to
development of cognitive decline.
2. Suggestive diagnostic features:
a. Meets criteria for rapid eye movement sleep behavior disorder.
b. Severe neuroleptic sensitivity.
12
H. The disturbance us not better explained by cerebrovascular disease, another
neurodegenerative disease, the effects of a substance, or another mental,
neurological, or systemic disorder.”
Symptoms of DLB include fluctuating cognitive impairment, recurrent visual
hallucinations, parkinsonism, recurrent episodes of confusion and progressive
disorientation. Psychiatric manifestations are common in DLB including mainly visual
hallucinations, delusions, apathy, and anxiety. They are generally present early in the
course of illness. With the progression of the disease memory impairments manifest in
most cases (McKeith et al. 2004).
1.2.4 Frontotemporal dementia (FTD)
Frontotemporal dementia (FTD) is a common form of early-onset dementia in
individuals younger than 65 years (Rosness, Engedal, and Chemali 2016). The
underlying pathological process for FTD includes intra-neuronal molecular
abnormalities throughout frontal and temporal brain regions (Rycroft and Giovannetti
2017). FTDs are sub-categorized according to the patient’s cognitive/ behavioural
presentation. Individuals with behavioural variant FTD (bvFTD) exhibit distinct
changes in personality and inappropriate social functioning as the main feature of
the disease. Main symptoms of bvFTD include emotional blunting, loss of insight,
lack of empathy, apathy, lack of initiation, disinhibition, poor impulse control, and
anhedonia. Other symptoms include mental rigidity, lack of social awareness,
neglect of personal hygiene and executive function deficits. Symptoms of FTDs
progress faster than in AD (Rycroft and Giovannetti 2017; Rosness, Engedal, and
Chemali 2016). Diagnostic criteria for bvFTD include (Rascovsky et al. 2011):
13
I. Neurodegenerative disease
The following symptom must be present to meet criteria for bvFTD A. Shows progressive deterioration of behaviour and/or cognition by observation or history (as provided by a knowledgeable informant).
II. Possible bvFTD Three of the following behavioural/cognitive symptoms (A–F) must be present to meet criteria. Ascertainment requires that symptoms be persistent or recurrent, rather than single or rare events.
A. Early* behavioural disinhibition [one of the following symptoms (A.1–A.3) must be present]: A.1. Socially inappropriate behaviour A.2. Loss of manners or decorum A.3. Impulsive, rash or careless actions
B. Early apathy or inertia [one of the following symptoms (B.1–B.2) must be present]: B.1. Apathy B.2. Inertia
C. Early loss of sympathy or empathy [one of the following symptoms (C.1–C.2) must be present]: C.1. Diminished response to other people’s needs and feelings C.2. Diminished social interest, interrelatedness or personal warmth
D. Early perseverative, stereotyped or compulsive/ritualistic behaviour [one of the following symptoms (D.1–D.3) must be present]:
D.1. Simple repetitive movements D.2. Complex, compulsive or ritualistic behaviours D.3. Stereotypy of speech
E. Hyperorality and dietary changes [one of the following symptoms (E.1–E.3) must be present]: E.1. Altered food preferences E.2. Binge eating, increased consumption of alcohol or cigarettes E.3. Oral exploration or consumption of inedible objects
F. Neuropsychological profile: executive/generation deficits with relative sparing of memory and visuospatial functions [all of the following symptoms (F.1–F.3) must be present]:
F.1. Deficits in executive tasks F.2. Relative sparing of episodic memory F.3. Relative sparing of visuospatial skills
III. Probable bvFTD All of the following symptoms (A–C) must be present to meet criteria.
A. Meets criteria for possible bvFTD B. Exhibits significant functional decline (by caregiver report or as evidenced by Clinical Dementia Rating Scale or Functional Activities Questionnaire scores) C. Imaging results consistent with bvFTD [one of the following (C.1–C.2) must be present]:
C.1. Frontal and/or anterior temporal atrophy on MRI or CT C.2. Frontal and/or anterior temporal hypoperfusion or hypometabolism on PET or SPECT
IV. Behavioural variant FTD with definite FTLD Pathology Criterion A and either criterion B or C must be present to meet criteria.
A. Meets criteria for possible or probable bvFTD B. Histopathological evidence of FTLD on biopsy or at post-mortem C. Presence of a known pathogenic mutation
V. Exclusionary criteria for bvFTD Criteria A and B must be answered negatively for any bvFTD diagnosis. Criterion C can be positive for possible bvFTD but must be negative for probable bvFTD.
A. Pattern of deficits is better accounted for by other non-degenerative nervous system or medical disorders B. Behavioural disturbance is better accounted for by a psychiatric diagnosis C. Biomarkers strongly indicative of Alzheimer’s disease or other neurodegenerative process
Figure 1 International consensus criteria for behavioural variant FTD Criteria from
“Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia”
by Roscovsky and colleagues, 2011, Brain, 134, p. 2460. Copyright 2011 by Oxford University
Press. Adapted with permission.
14
1.2.5 Progressive supranuclear palsy (PSP)
Progressive supranuclear palsy (PSP) is a neurodegenerative disease which
presents in adulthood and more commonly in men. Etiology of PSP is still unknown. It is
characterized by postural instability and falls, supranuclear gaze palsy, and frontal-
subcortical dementia (Höglinger et al. 2017). The most common anatomical areas
involved in PSP include globus pallidum, substantia nigra, subthalamic nucleus, locus
ceruleus, periaqueductal grey matter, midbrain tectum and pontine nuclei (Rajput and
Rajput 2001). Gait impairment and falls are the most common initial presentation of
PSP. Other symptoms include postural instability, cognitive decline, behavioural
difficulties, executive dysfunction, sleep difficulties, spontaneous motor movement, and
extraocular movement abnormalities (Rajput and Rajput 2001). Criteria for diagnosing
PSP according to Höglinger and colleagues (2017) includes:
15
B1: Mandatory inclusion criteria
1. Sporadic occurrence 2. Age 40 or older at onset of first PSP-related symptom 3. Gradual progression of PSP-related symptoms
B2: Mandatory exclusion criteria
Clinical findings 1. Predominant, otherwise unexplained impairment of episodic memory, suggestive of AD 2. Predominant, otherwise unexplained autonomic failure, e.g., orthostatic hypotension (orthostatic reduction in blood pressure after 3 minutes standing ≥30 mm Hg systolic or ≥15 mm Hg diastolic), suggestive of multiple system atrophy or Lewy body disease 3. Predominant, otherwise unexplained visual hallucinations or fluctuations in alertness, suggestive of dementia with Lewy bodies 4. Predominant, otherwise unexplained multisegmental upper and lower motor neuron signs, suggestive of motor neuron disease (pure upper motor neuron signs are not an exclusion criterion) 5. Sudden onset or step-wise or rapid progression of symptoms, in conjunction with corresponding imaging or laboratory findings, suggestive of vascular etiology, autoimmune encephalitis, metabolic encephalopathies, or prion disease 6. History of encephalitis 7. Prominent appendicular ataxia 8. Identifiable cause of postural instability, e.g., primary sensory deficit, vestibular dysfunction, severe spasticity, or lower motor neuron syndrome
Imaging findings 1. Severe leukoencephalopathy, evidenced by cerebral imaging 2. Relevant structural abnormality, e.g., normal pressure or obstructive hydrocephalus; basal ganglia, diencephalic, mesencephalic, pontine or medullary infarctions, hemorrhages, hypoxic-ischemic lesions, tumors, or malformations
B3: Context dependent exclusion criteria
Imaging findings 1. In syndromes with sudden onset or step-wise progression, exclude stroke, cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) or severe cerebral amyloid angiopathy, evidenced by diffusion-weighted imaging (DWI), fluid attenuated inversion recovery, or T2*-MRI 2. In cases with very rapid progression, exclude cortical and subcortical hyperintensities on DWI-MRI suggestive of prion disease
Laboratory findings 1. In patients with PSP-CBS, exclude primary AD pathology (typical CSF constellation [i.e., both elevated total tau/phospho-tau protein and reduced β-amyloid 42] or pathological β-amyloid PET imaging)
2. In patients aged <45 years, exclude a. Wilson’s disease (e.g., reduced serum ceruloplasmin, reduced total serum copper,
increased copper in 24 hour urine, and Kayser-Fleischer corneal ring) b. Niemann-Pick disease, type C (e.g., plasma cholestan-3β,5a,6β-triol level, filipin test on skin fibroblasts)
c. Hypoparathyroidism d. Neuroacanthocytosis (e.g., Bassen-Kornzweig, Levine Critchley, McLeod disease) e. Neurosyphilis
3. In rapidly progressive patients, exclude a. Prion disease (e.g., elevated 14-3-3, neuron-specific enolase, very high total tau
protein [>1,200 pg/mL], or positive real-time quaking-induced conversion in CSF) b. Paraneoplastic encephalitis (e.g., anti-Ma1, Ma2 antibodies)
4. In patients with suggestive features (i.e., gastrointestinal symptoms, arthralgias, fever, younger age, and atypical neurological features such as myorhythmia), exclude Whipple’s disease (e.g., T. Whipplei DNA polymerase chain reaction in CSF)
Figure 2 Basic features of PSP Criteria from “Clinical Diagnosis of Progressive
Supranuclear Palsy: The Movement Disorder Society Criteria” by Höglinger and colleagues,
2017, Movement Disorder, 32, issue 6, p. 14-15. Copyright 2017 by John Wiley and Sons.
Adapted with permission.
16
The wide range of symptoms in dementia disorders usually results in substantial
functional impairment. To date, no effective treatment exists for dementia disorders to
significantly slow or stop the course of the disease. Dementia disorders are progressive.
Therefore symptoms evolve and worsen over time. Cognitive, behavioural, and
psychiatric symptoms of dementia may cause difficulty in maintaining employment,
social functioning and social engagement decline that can result in social isolation.
Persons with dementia gradually become unable to perform daily tasks such as
grooming and meal preparation. Difficulties with routine daily activities are associated
with a wide range of negative consequences including decreased quality of life,
frustration, depression, institutionalization, higher costs of care and eventually full
dependency on their CGs (Rycroft and Giovannetti 2017).
1.3 Dementia and caregiving figures
According to a 2016 health report titled “Alzheimer’s disease and other
dementias in Canada”, the primary family CGs of dementia patients were spouses
(46%) and adult children (46%) typically daughters. Spousal CGs are predominantly
female (66%). Most spousal CGs live in the same household as the person with
dementia (99%) and provide daily care (97%). The average age of spousal CGs is 74,
and 15% of them are employed at a job or business. Among adult child CGs, the
majority (71%) live in the same household as their parent and provide daily care (77%).
Their average age is 54, and 60% are employed (Wong, Gilmour, and Ramage-Morin
2016).
According to Alzheimer Society of Canada , in 2016, 564,000 Canadians live with
Alzheimer’s disease and related disorders (ADRD) (Chambers, Bancej, and McDowell
2016). Every year 25000 new cases are diagnosed with dementia. By 2031, the
number of Canadians living with dementia will increase to 937,000 (Chambers, Bancej,
and McDowell 2016). Costs and challenges of dementia disorders go beyond the
individual with the disease. Assuming that each person with dementia has at least two
CGs, 1.1 million Canadians were affected directly or indirectly by the disease in 2016
17
(Chambers, Bancej, and McDowell 2016). In 2016, the annual cost to Canadians to care
for those living with dementia was $10.4 billion. In 2011, CGs spent more than 19.2
million unpaid hours (conservatively valued at $1.2 billion) caring for people with
dementia. It is estimated that this number will double by 2031. The costs related to
dementia and their CGs will also increase rapidly (Chambers, Bancej, and McDowell
2016). Although, the cost of caring for individuals with dementia at home is less than
providing care for them in residential care facilities, costs will rise if CGs are not
adequately supported (Chappell et al. 2004). It is important to note that if CGs are not
adequately supported, their ability to care will decrease significantly. In addition, the
cost of home based services would have to be replaced by the healthcare system.
1.4 Health ramifications of caregiving
Taking care of a family member with dementia takes mental, physical and social
tolls on CGs. There is a strong consensus supported by a large body of literature that
family CGs of dementia patients are at high risk of psychological and physical disorders.
Different studies have shown that CGs have higher levels of depression (Pinquart and
Sörensen 2003; Robison et al. 2009; Caputo, Pavalko, and Hardy 2016), stress
(Fredman et al. 2010; Pinquart and Sörensen 2003), anxiety (Schulz and Martire 2004)
and other indicators of psychological distress (Pinquart and Sörensen 2003; Schulz and
Sherwood 2008; Roth et al. 2009; Robison et al. 2009); they also have lower levels of
subjective well-being and self-efficacy (Pinquart and Sörensen 2003) and more
functional limitation (Caputo, Pavalko, and Hardy 2016) compared to non-CGs. Another
study showed that midlife CGs of dementia patients have higher rates of depression
compared with their peers of the same age (Covinsky et al. 2001). Specific factors
including co-residence with the CR, caring for a younger person, low income and unmet
needs for long-term care services increase the likelihood of depressive symptoms
(Robison et al. 2009). A part of emotional distress experienced by the CGs often results
from observing their family member dealing with a debilitating and progressive medical
condition (Amirkhanyan and Wolf 2003; Monin and Schulz 2009). It also has been
18
shown that different factors can intensify negative outcomes of caregiving including
gender, the age of the CG, CG relationship to the CR, and co-residence with the CG.
Research data reveals that older CGs particularly women have lower self-assessed
health status (Arnsberger, Lynch, and Li 2012). Women are more likely to be burdened
by caregiving (Pinquart and Sörensen 2006). CGs who live with the CR have higher
levels of depression, higher rates of subjective burden, poorer self-rated health and
experience more functional limitation compared to CGs who do not co-reside with the
CR (Grunfeld et al. 1997; Kim et al. 2012; Pinquart and Sörensen 2007; Soskolne,
Halevy-Levin, and Ben-Yehuda 2007; Caputo, Pavalko, and Hardy 2016). Spousal CGs
have less time away from caregiving and show higher levels of stress (Fredman et al.
2010), experience greater burden and fewer caregiving rewards and report poorer
physical and mental health in comparison with other types of CGs (Pinquart and
Sörensen 2011; Raschick and Ingersoll-Dayton 2004). A study of more than 2000 CGs
(Arnsberger, Lynch, and Li 2012) showed having low income, higher levels of stress,
providing ADL and medical care, being a female or caring for a male, caring for a
younger patient and being unemployed were predictors of lower self-assessed health
status.
Caregiving can have a significant impact on CGs’ lifestyle. Responsibilities often
limit the personal, social life and employment of the CG. Many CGs alter their work
pattern to meet caregiving responsibilities including going to work late, leaving early,
being distracted at work, taking extra calls and being less motivated. Work interruption
can influence CG’s seniority benefits, direct benefit/cost and indirect costs including the
inability to maintain or improve skills, lose opportunities of promotion and work
dissatisfaction (Duxbury, Schroeder, and Higgins 2009). CGs are at risk of giving up
their careers and missing work hours which in turn can influence their financial and
personal success and can limit their social interaction (Schulz et al. 1997; Sawatzky and
Fowler-Kerry 2003). Financial strain has been shown to influence CG stress given the
high cost of caregiving (Williams et al. 2003).
CGs frequently are homebound and have less time due to their responsibilities.
They are not able to spend time with friends, engage in leisure activities, fulfil family or
access services in their community which can result in social isolation. Social isolation is
19
a major health issue at both individual and societal levels (Findlay 2003; National
Seniors Council 2014; Pinquart and Sörensen 2003). Socially isolated individuals are
less able to contribute to their communities which can have a negative effect on their
sense of satisfaction and efficacy (Greene and Burleson 2003). On the other hand, the
organizations, communities and society at large suffer due to the loss of services the
individuals could have provided if they were not isolated. Further, social isolation has
negative effects on the mental and cognitive health of seniors, with an increased risk of
depression, stress and suicide (Findlay 2003; National Seniors Council 2014).
As mentioned before, dementia causes devastating consequences including
progressive loss of memory, inability to communicate, loss of language abilities and
problem-solving skills in CRs (Dupuis 2003). These consequences profoundly impair
the CG-CR relationship, transforming it into a one-way relationship for the CG
(Sawatzky and Fowler-Kerry 2003). Eventually, dementia leads to psychosocial death of
the sufferer, a phenomenon “in which the psychological essence, individual personality,
or self is perceived as dead, though the person remains alive” (Sweeting and Gilhooly
1997). One of the most stressful and painful experiences for dementia family CGs is
watching gradual deterioration and “psychological loss” of their CRs (Dupuis 2003).
Later stages of dementia disorders cause confusion in CGs toward their CRs regarding
whether their loved one still exists for them. They also experience a significant amount
of emotional distress and turmoil rooted in that confusion. This phenomenon has been
known as ambiguous loss (Boss 1999). Ambiguous loss increases the risk of
depression, anxiety, family conflict and social isolation in the CG and family members
(Boss 1999; Sawatzky and Fowler-Kerry 2003).
Caregiving can also change the relationship of the CG to others in different ways.
Occasionally it can improve the relationship with other members of the family as they
support one another or it can result in family tension or even conflict (Schulz and Martire
2004; Sawatzky and Fowler-Kerry 2003). As a consequence of caring for a patient with
dementia, CGs more likely experience loss of privacy and control. Loss of privacy can
happen in at least two ways, first by hiring a personal support worker and having a
stranger in their private life, and second by being exposed through having to share
detailed information about their private life in different health situations (Sawatzky and
20
Fowler-Kerry 2003). CGs may experience loss of control, as they may enter into the
caregiving role feeling that they had little or no choice (Sawatzky and Fowler-Kerry
2003). Co-residence with the CR is a risk factor for negative psychosocial outcomes
(Covinsky et al. 2001; Zivin and Christakis 2007). CGs who live with their family
member engage less in preventive health behaviour (Roth et al. 2009). They also are at
increased risk of social isolation (Robison et al. 2009).
It has been reported in different studies that CGs have poorer physical health
compared to non-CGs (Pinquart and Sörensen 2003; Vitaliano, Zhang, and Scanlan
2003) and are at risk of serious illnesses (Shaw et al. 1997; Kiecolt-Glaser et al. 1996).
Physiological functioning of CGs may be compromised due to a combination of
prolonged distress, physical demands of caregiving and biological vulnerabilities of
older CGs, thereby increasing the risk for physical health complications. Studies reveal
that CGs have lower rates of engaging in preventive health behavior (Schulz et al.
1997), suppressed immune response (Kiecolt-Glaser et al. 1991, 1996; Glaser and
Kiecolt-Glaser 1997; Li et al. 2007; Glaser et al. 2000; Bauer et al. 2000, Damjanovic et
al. 2007; von Känel et al. 2006), increased levels of inflammatory biomarkers (Kiecolt-
Glaser et al. 2003; Gouin et al. 2012; Lovell and Wetherell 2011; Kim and Knight 2008),
increased cardiovascular reactivity (King, Oka, and Young 1994), slower rates of wound
healing (Kiecolt-Glaser et al. 1995), HPA axis dysregulation (Gallagher-Thompson et al.
2006; Davis 2004), and fatigue and sleep deprivation (Cohen, Miller, and Weinrobe
2001). It has been shown that experiencing high levels of anxiety and depression is
associated with poorer physical health consequences among CGs (Chang, Chiou, and
Chen 2010).
Results of studies on caregiving and mortality are inconsistent, but some studies
have reported a higher rate of mortality in CGs than non-CGs (Schulz and Beach 1999;
Christakis and Allison 2006). In the CG Health Effect Study, results showed that CGs
who were not stressed by caregiving tasks and responsibilities had no difference in
mortality rate compared with non-CGs. However, CGs who were stressed by the
caregiving role had an increased mortality risk (60% over a 4-year period) compared to
non-CGs (Schulz and Beach 1999). In another study higher levels of perceived stress
was correlated with higher mortality risk (81% over a 3-year period) (Fredman et al.
21
2010) and spousal CGs showed a twofold increased risk of mortality than married non-
CGs over the 3-year period. Low-stress CGs who had a lower mortality rate were less
involved in caregiving, less likely to be a spousal CG, had more social contact and
performed fewer caregiving activities. Overall, older spousal female CGs who
experienced a higher level of stress had higher mortality rates (Fredman et al. 2010).
Therefore, it can be concluded that the stress level rather than being a CG per se, may
influence mortality in CGs. Interestingly, some studies which followed CGs for a longer
period showed that CGs have lower mortality rates than non-CGs (Brown et al. 2009;
Fredman et al. 2010; O’Reilly et al. 2008; Ramsay, Grundy, and O’reilly 2013).
Overall, CGs who experience high levels of stress and caregiving demands with
insufficient internal or external resources to deal with stressful situations and pre-
existing health conditions and biological vulnerabilities are at increased risk of mental
and physical disorders (Schulz and Martire 2004; Roth, Fredman, and Haley 2015).
1.5 Caregiving intervention research
There is a large body of literature on interventions for CGs of individuals with
dementia. After exploring the extensive literature on this subject, meta-analysis and
review papers regarding studied interventions for family CGs were selected for this
examination rather than individual studies (Table 1). The effectiveness analysis and
comparison of different interventions are difficult and non-reliable due to significant
variability among individual studies. Meta-analysis and reviews combine data from
different studies which provide the whole picture instead of a small part of it.
22
Ta
ble
1 S
um
ma
ry o
f m
eta
-ana
lysis
and
re
vie
ws o
f in
terv
en
tion
s fo
r fa
mily
CG
s
Res
ult
s
Only
mu
ltic
om
pone
nt
inte
rven
tions led t
o
reduced c
are
giv
er
burd
en
(n =
3, d =
0.4
6)
while
more
focal in
terv
entions
were
no
t eff
ective
.
Psychosocia
l in
terv
entions
had a
sig
nific
ant
mo
dera
te
effect o
n p
sycholo
gic
al
morb
idity (
ran
do
m d
=0.3
1,
CI=
0.1
3–0.5
0),
sig
nific
ant
sm
all
eff
ect on C
G
know
ledge
(d=
0.5
1, C
I=
0.0
5–0.9
8)
an
d C
R m
ood (
d=
0.6
8,
CI=
0.3
0–
1.0
6)
and
no
effect o
n c
are
giv
er
burd
en.
Outc
om
es h
ad c
onsid
era
ble
variab
ility
part
ly d
ue to
diffe
rences in m
eth
odo
logy
and inte
rvention t
echn
iqu
es.
Nonp
harm
aco
logic
al
inte
rven
tions h
ad a
mo
dest
sig
nific
an
t eff
ect on
reducin
g
BP
SD
, w
ith
(overa
ll e
ffect
siz
e=
0.3
4 (
95%
CI=
0.2
0–
0.4
8,
p ˂
0.0
1)
an
d C
G
reactions t
o B
PS
D (
overa
ll
effect siz
e=
0.1
5 (
95%
CI=
0.0
4–0.2
6, p=
0.0
06).
Ou
tco
me
me
as
ure
s
Care
giv
ing
burd
en
Psycholo
gic
al
morb
idity,
Care
giv
ing
burd
en
Fre
quency o
r severi
ty
of B
PS
D
Care
giv
er
reactions to
these s
ym
pto
ms
Care
giv
er
dis
tress
attrib
ute
d to t
hese
sym
pto
ms
Inte
rve
nti
on
ele
me
nts
Sup
port
gro
up
Educatio
n
Psychoeduca
tio
n
Counse
ling
Respite
Multic
om
pon
ent
Counse
ling
Educatio
n
Fam
ily c
ounse
ling,
Patient
Fam
ily invo
lvem
ent
Sup
port
gro
ups
Skill
s tra
inin
g
Educatio
n
Activity p
lann
ing a
nd
environ
men
tal re
desig
n
Enh
ancin
g s
up
port
Self-c
are
tech
niq
ues
Multic
om
pon
ent
Oth
er
Des
ign
Meta
-ana
lysis
of
Experi
men
tal
RC
Ts
Quasi-
experi
me
nta
l
One-g
roup
pre
/post
Meta
-ana
lysis
of
Quasi-
experi
me
nta
l
tria
ls
RC
Ts
Meta
-ana
lysis
of
RC
Ts
Sa
mp
le
siz
e
24 s
tud
ies,
N=
1254
30 s
tud
ies,
N=
2040
23 s
tud
ies,
N =
327
9
Au
tho
r
(ye
ar)
Acto
n
an
d
Kan
g
(2001)
Bro
daty
et
al.
(2003)
Bro
daty
an
d
Ara
sara
t
nam
(2012)
23
Re
su
lts
Stu
die
s w
ith in
div
idua
l
psychosocia
l in
terv
entions a
nd
respite c
are
whe
n th
e
inte
rven
tion g
roup r
ece
ived
more
resp
ite t
ha
n th
e c
ontr
ol
gro
up r
eport
ed m
odera
tely
str
ong e
ffects
(avera
ge
d=
0.6
3 f
or
thre
e s
tud
ies w
ith t
he
contr
ol gro
up).
Gro
up
psychosocia
l in
terv
entions h
ad
a s
mall
positiv
e e
ffect o
n C
G
dis
tress.
M
ixed e
ffect
on m
ost C
G a
nd C
R
outc
om
es inclu
din
g d
epre
ssio
n
and c
om
pete
nce.
Most stu
die
s
did
not
sh
ow
any e
ffects
on
care
giv
er
burd
en
. T
he r
espite
inte
rven
tion in 8
of
12 s
tudie
s
was a
ssocia
ted
with d
ela
ye
d C
R
institu
tiona
liza
tio
n.
Ind
ivid
ual beh
avio
ral
mana
ge
ment
techn
iques o
f six
or
more
sessio
ns h
ad
short
-te
rm
and lon
g-t
erm
effects
on C
G
depre
ssio
n (
n=
11).
Cop
ing
str
ate
gie
s w
ere
associa
ted
with
reduced d
epre
ssio
n a
nd d
istr
ess
over
short
-term
inte
rvals
(n
=16).
Educatio
n a
nd s
up
port
ive
thera
pie
s w
ere
no
t eff
ective
(n=
25).
Ou
tco
me
me
as
ure
s
CG
dis
tress
Menta
l hea
lth
CG
burd
en
Com
pete
nce
CG
psycholo
gic
al he
alth
(depre
ssio
n, str
ess,
anxie
ty)
Qualit
y o
f lif
e
CG
burd
en
Inte
rve
nti
on
ele
me
nts
P
sychosocia
l ap
pro
aches
R
espite
C
are
pla
nnin
g
C
om
bin
ed
inte
rven
tion
s
E
ducatio
na
l
D
em
entia
-specific
thera
pie
s
C
opin
g s
trate
gie
s
(gro
up a
nd ind
ivid
ua
l)
B
eh
avio
ral
mana
ge
ment
techn
iques
(gro
up a
nd ind
ivid
ua
l)
S
up
port
ive
thera
py
Des
ign
Meta
-ana
lysis
of
RC
Ts
Meta
-ana
lysis
of
R
CT
s
C
ontr
olle
d tri
als
Meta
-ana
lysis
of
R
CT
s
C
ontr
olle
d tri
als
Sa
mp
le
siz
e
20 s
tud
ies,
N =
113
8
25 s
tud
ies,
N =
468
6
62 s
tud
ies,
N =
506
1
Au
tho
r
(ye
ar)
Kn
igh
t et
al. (
19
93)
Sm
its e
t
al. (
20
07)
Selw
oo
d
et
al.
(2007)
24
Res
ult
s
In g
enera
l eff
ects
were
sm
all
but
sig
nific
an
t (d
= -
0.2
4 to
0.4
6).
Psychoeduca
tio
n s
how
ed s
ign
ific
ant
effects
on
burd
en (
d=
−0.1
5, 95%
CI=
−0.2
5 t
o −
0.0
4),
de
pre
ssio
n (
d=
−0.2
7,
CI=
−0.4
1 t
o −
0.1
3),
we
ll-b
ein
g (
d=
0.2
4,
CI=
0.0
4 to 0
.44),
kn
ow
led
ge
(d=
0.4
6,
CI=
0.2
8 to 0
.64),
and
sym
pto
ms o
f care
-
recip
ient (d
= −
0.1
7, C
I= −
0.2
9 to
−0.0
4).
CB
T a
nd c
ou
nselin
g d
ecre
ased b
urd
en
(d=
−0.3
6, C
I= −
0.7
3 t
o −
0.0
1)
but
ha
d
no e
ffect o
n o
ther
outc
om
es. C
ounse
ling
reduced b
urd
en (
d=
−0.5
0,
CI=
−0.8
6 t
o
−0.1
4).
Sup
port
inte
rven
tio
ns incre
ase
d
well-
be
ing (
d=
2.0
3, C
I= 1
.36 to
2.7
0).
Respite d
ecre
ased b
urd
en (
d=
−0.2
6,
CI=
−0.3
9 t
o −
0.1
2)
an
d d
epre
ssio
n (
d=
−0.1
2, C
I= −
0.2
4 t
o −
0.0
0),
and
incre
ased
we
ll-b
ein
g (
d=
0.2
7, C
I= 0
.03
to 0
.51).
Multic
om
pon
ent
inte
rventions
dela
yed C
R institu
tio
na
lization (
d=
0.5
1,
CI=
0.3
0 to 0
.88)
and h
ad n
o e
ffects
on
oth
er
outc
om
es. In
terv
entio
ns that
need
ed a
ctive C
G p
art
icip
ation
were
more
effective
tha
n info
rma
tion
-only
inte
rven
tions.
The p
sychosocia
l in
terv
ention d
id n
ot
affect
depre
ssio
n a
nd b
urd
en. C
ase
mana
ge
ment
an
d te
lepho
ne s
upp
ort
did
not a
ffect
depre
ssio
n. R
esp
ite incre
ase
d
burd
en (
d=
0.3
0, 9
5%
CI=
0.1
2 t
o 0
.48,
n=
2).
Ou
tco
me
mea
su
res
CG
outc
om
es:
B
urd
en
D
epre
ssio
n
S
ub
jective w
ell-
bein
g
(life-s
atisfa
ction,
happ
iness)
K
now
ledge
C
opin
g a
bili
ties
CR
ou
tcom
es:
S
ym
pto
ms
In
stitu
tio
na
lization
CG
burd
en
Depre
ssio
n
Inte
rve
nti
on
ele
me
nts
P
sychoeduca
tio
n,
C
BT
C
ounse
ling
S
up
port
T
rain
ing o
f th
e C
R
R
espite
M
ultic
om
pon
ent
P
sychosocia
l
inte
rven
tion
C
om
mun
ication
techno
logy
C
ase m
ana
gem
en
t
R
espite c
are
Des
ign
Meta
-
ana
lysis
of
R
CT
s
Meta
-
ana
lysis
of
R
CT
s
C
ontr
olle
d
tria
ls
t r i a l s
Sa
mp
le
siz
e
127
stu
die
s,
N =
593
0
29
stu
die
s,
N =
887
3
Au
tho
r
(ye
ar)
Pin
qu
art
an
d
Sö
ren
sen
(2003)
Sh
oen
mak
ers
et
al.
(2010)
25
Res
ult
s
Psychoth
era
py w
as e
ffective in
impro
vin
g C
G d
epre
ssio
n (
d=
-
0.2
9,
95%
CI=
-0.4
4 to -
0.1
4),
subje
ctive w
ell-
bein
g (
d=
0.3
7, C
I=
0.1
1 t
o 0
.63),
abili
ty/ know
ledge
(d=
0.4
2,
CI=
0.2
3 to
0.6
1)
and C
R
sym
pto
ms (
d=
-0.1
9, C
I= -
0.3
8 t
o -
0.0
0).
Psychoed
ucation h
ad a
n
effect o
n C
G w
ell-
be
ing (
d=
0.5
0,
CI=
0.3
1 to 0
.68),
depre
ssio
n (
d=
-
0.4
3,
CI=
-0.5
3 to -
0.3
2)
an
d
abili
ty/ kn
ow
ledg
e (
d=
0.5
3,
CI=
0.4
2 t
o 0
.63).
Mu
ltic
om
po
nent
inte
rven
tions w
ere
associa
ted w
ith
impro
ve
d C
G w
ell-
be
ing,
abili
ty/k
now
ledg
e a
nd b
urd
en (
d=
–
.62 t
o .8
6).
Supp
ort
ive
inte
rven
tions h
ad p
ositiv
e e
ffect on
burd
en (
d=
–.3
5, C
I= -
0. 59
to -
0.1
1)
and a
bili
ty/k
now
led
ge
(d=
0.2
9,
CI=
0.1
3 t
o 0
.45).
Re
spite
had n
o e
ffects
on
outc
om
es.
M
ultic
om
pon
ent
inte
rventio
ns w
ere
associa
ted
with r
ed
uced t
he o
dds
of C
R institu
tion
aliz
ation (
n=
10,
odds r
atio=
0.6
6,
95%
CI=
0.4
3 t
o
0.9
9),
and t
ime t
o p
lacem
ent
(sta
ndard
ized m
ea
n d
iffe
rence=
1.4
4,
95%
CI=
0.0
7 to
2.8
1).
Hig
h
qua
lity s
tudie
s s
how
ed a
sig
nific
an
t positiv
e e
ffects
on o
dds
of in
stitu
tio
na
lizatio
n (
odds r
atio=
0.6
0,
CI=
0.4
3 t
o 0
.85)
and n
o
effect o
n t
ime t
o r
epla
ce
me
nt.
Ou
tco
me
mea
su
res
CG
burd
en
Depre
ssio
n
Sub
jective w
ell-
bein
g
Perc
eiv
ed C
G s
atisfa
ctio
n
Abili
ty/k
now
led
ge
CR
sym
pto
ms
Odds o
f C
R
institu
tiona
liza
tio
n
Tim
e t
o institu
tiona
liza
tion
Inte
rve
nti
on
ele
me
nts
P
sychoeduca
tio
n
S
up
port
ive
P
sychoth
era
py
R
espite
T
rain
ing o
f C
R
M
ultic
om
pon
ent
H
om
e-b
ased o
r
outp
atient
multic
om
pon
ent
Des
ign
Meta
-ana
lysis
of
R
CT
s
C
ontr
olle
d
tria
ls
Meta
-ana
lysis
of
R
CT
s
C
ontr
olle
d
tria
ls
Sa
mp
le
siz
e
78 s
tud
ies
13 s
tud
ies,
N =
930
3
Au
tho
r
(ye
ar)
Sö
ren
sen
et
al.
(2002)
Sp
ijk
er
et
al. (
20
08)
26
Res
ult
s
Tw
o o
f th
ree s
tudie
s s
how
ed a
n
effect o
n q
ualit
y o
f lif
e (s
tandard
ized
effect siz
es o
f 0.2
3–
0.4
3 a
cro
ss the
thre
e s
tudie
s)
and f
ive o
f six
stu
die
s
show
ed e
ffects
on n
euro
psych
iatr
ic
sym
pto
ms (
po
ints
diffe
rence=
1.4
8,
CI=
2.1
1 -
0.8
6).
In t
hre
e s
tudie
s
measure
d c
are
r burd
en,
no
effect
was fou
nd o
n c
are
giv
er
burd
en.
The
inte
rpre
tation
was d
ifficult b
ecause
none
of th
e s
tudie
s u
sed o
nly
info
rmation p
rovis
ion a
nd it
was a
part
of
ma
ny inte
rventions.
Use o
f m
em
ory
aid
s (
n=
8)
foun
d
effective
in
im
pro
vin
g C
R’s
com
mu
nic
ation
with th
eir C
G. O
ther
inte
rven
tion e
lem
en
ts y
ield
ed m
ixed
find
ings.
Psychoeducation a
nd s
kill
build
ing
inte
rven
tion m
ain
tain
CG
well-
bein
g
and influe
nce u
pon
de
pre
ssio
n,
qua
lity
of lif
e,
att
itu
des tow
ard
s c
are
giv
ing,
and a
nxie
ty. M
ultic
om
pone
nt stu
die
s
impro
ve
d d
epre
ssio
n a
nd s
ocia
l
support
, w
hile
the t
echn
olo
gy-b
ased
stu
die
s im
pro
ved d
epre
ssio
n, burd
en,
and s
ocia
l su
pport
.
Ou
tco
me
me
as
ure
s
Qualit
y o
f lif
e
Neuro
psychia
tric
sym
pto
ms
Activitie
s o
f da
ily
livin
g/c
og
nitio
n
Institu
tio
na
lization
Care
giv
er
burd
en/s
tress
The v
erb
al
com
mu
nic
ation
behavio
r of
the
pers
on w
ith A
D
Depre
ssio
n
CG
burd
en
Socia
l su
pport
We
ll-be
ing
Inte
rve
nti
on
ele
me
nts
Info
rmation p
rovis
ion
Inte
rventions u
sed t
o
impro
ve
com
mun
ication
betw
een C
Gs (
form
al
and info
rma
l) a
nd C
Rs:
Mem
ory
books,
Educatio
n a
nd
train
ing
Activity-b
ase
d
pro
gra
mm
ing
Psychoeduca
tio
n
Psychoth
era
py/c
ounse
ling
Multic
om
pon
ent
Technolo
gy b
ased
Des
ign
Syste
matic r
evie
w o
f
RC
Ts
Syste
matic r
evie
w
RC
Ts
Pre
/posttest
Multip
le b
ase
line
sin
gle
sub
ject
Nonra
ndom
ized
contr
olle
d tria
l
Syste
matic r
evie
w o
f
RC
Ts
Qualit
ative s
tud
ies
(n=
2)
Sa
mp
le
siz
e
13 s
tud
ies
13
stu
die
s,
N =
315
20
stu
die
s,
N =
461
6
Au
tho
r
(ye
ar)
Co
rbett
et
al. (
20
12)
Eg
an
et
al.
(2010)
Elv
ish
et
al. (
20
13)
27
Res
ult
s
Multic
om
pon
ent
inte
rventio
ns
had t
he g
reate
st
eff
ect on
care
giv
er
bu
rden
an
d C
R
institu
tiona
liza
tio
n.
Psychoeduca
tio
n a
ffecte
d
know
ledge
an
d r
ela
xation
train
ing w
as m
ost lik
ely
to
have
a p
ositiv
e e
ffect
on a
nxie
ty.
Few
stu
die
s r
evea
led
sta
tistica
lly s
ignific
an
t eff
ects
on c
are
-recip
ient. E
xclu
siv
e
fam
ily inte
rventio
ns tha
t
targ
ete
d s
pecific
con
ditio
ns,
behavio
rs, or
sym
pto
ms w
ere
more
effective
tha
n g
enera
l
appro
aches (
5 o
f 11 t
ria
ls
show
ed im
pro
vem
ent
in
sym
pto
m c
ontr
ol).
Four
of
12 s
tudie
s s
how
ed
sig
nific
an
t d
iffe
rences in
CG
outc
om
es. R
esu
lts r
egard
ing
costs
were
inco
nsis
ten
t. T
hre
e
stu
die
s r
eport
ed s
ignific
ant
diffe
rences in c
osts
betw
ee
n
inte
rven
tion a
nd c
ontr
ol
gro
ups, tw
o r
ep
ort
ing low
er
costs
and o
ne h
igher
cost
in
care
giv
er
inte
rven
tio
n g
rou
ps.
Ou
tco
me
me
as
ure
s
Care
giv
er
burd
en
Know
ledge
Anxie
ty
CR
institu
tiona
liza
tio
n
Qualit
y o
f lif
e
Depre
ssio
n/a
nxie
ty
Sym
pto
m c
on
trol
Health c
are
utiliz
ation
Rela
tio
nship
adju
stm
ent
CG
outc
om
es
B
urd
en
C
om
pete
nce
C
opin
g
K
now
ledge
Inte
rve
nti
on
ele
me
nts
Pro
fessio
na
l supp
ort
Psychoeduca
tio
n
Beh
avio
r m
an
age
men
t
Skill
s tra
inin
g
Counse
ling a
nd
psychoth
era
py
Self-c
are
an
d r
ela
xation
train
ing
Multic
om
pon
ent
Tra
inin
g c
are
giv
ers
to
mana
ge C
R b
ehavio
rs
Sup
port
or
co
unse
ling
fam
ily m
em
bers
and
train
ing t
he
m to
ma
nag
e
CR
sym
pto
ms a
nd
behavio
rs
with u
niq
ue inte
rventio
n
targ
ets
RC
Ts w
ith
costs
report
ed f
or
outc
om
es:
P
harm
acolo
gic
al
P
sychosocia
l
S
erv
ice d
eliv
ery
Des
ign
Revie
w o
f
Syste
matic
revie
ws
Meta
-ana
lysis
RC
Ts
Syste
matic r
evie
w
of
RC
Ts
Syste
matic r
evie
w
of
RC
Ts
Sa
mp
le
siz
e
17
syste
matic
revie
ws,
7
meta
-
ana
lyses
and 1
5
stu
die
s,
N =
187
9
29 s
tud
ies
N =
463
1
12 s
tud
ies
Au
tho
r
(ye
ar)
Git
lin
an
d
Ho
dg
so
n
(2015)
Gri
ffin
et
al.
(2013)
Jo
nes e
t al.
(2012)
28
Re
su
lts
Multic
om
pon
ent
inte
rventio
ns
(n=
5)
that
were
tailo
red
ind
ivid
ually
(fo
r re
ducin
g
depre
ssio
n, b
urd
en, a
nd
impro
vin
g w
ell-
be
ing a
nd
confid
ence)
and p
rovid
ed o
ver
tim
e w
ere
the m
ost e
ffective.
Case m
ana
gem
ent (n
=5)
had
som
e e
ffect o
n c
are
giv
ers
’
outc
om
e. T
he e
ffects
of
behavio
r m
ana
gem
ent
train
ing,
ind
ivid
ual skill
s tra
inin
g, a
nd
gro
up s
kill
s tra
inin
g (
n=
22)
were
inconsis
tent. C
om
bin
ed
counselin
g in
terv
entions (
n=
7)
were
eff
ective in r
educin
g
depre
ssio
n,
impro
vin
g m
oo
d,
and d
ela
yin
g C
R
institu
tiona
liza
tio
n.
The o
vera
ll effects
of th
ese
inte
rven
tions w
ere
sm
all
to
modera
te w
ith
a m
od
era
te
effect o
n t
he b
urd
en
an
d a
sm
all
eff
ect on d
epre
ssio
n.
They d
id n
ot h
ave a
ny e
ffe
ct on
CR
institu
tio
naliz
ations.
Ou
tco
me
mea
su
res
CG
outc
om
es:
Know
ledge
,
Psychosocia
l outc
om
es
(burd
en/s
ubje
ctive w
ell-
bein
g,
depre
ssio
n,
anxie
ty,
perc
eiv
ed
self-e
ffic
acy,
positiv
e e
xperi
ences o
f
care
giv
ing, satisfa
ction
with h
ea
lth
care
, q
ua
lity o
f
life),
Health b
ehavio
rs (
die
t,
exerc
ise, sle
ep)
CR
outc
om
es:
Use o
f psychotr
opic
dru
gs,
Cogn
itio
n,
mo
od,
behavio
ral d
istu
rba
nces,
socia
l fu
nction,
or
physic
al
function,
Hospitaliz
ations,
institu
tiona
liza
tio
ns, or
hea
lth c
are
vis
its inclu
din
g
ER
vis
its,
Accid
en
ts,
Health-r
ela
ted
qu
alit
y o
f
life,
Satisfa
ctio
n w
ith h
ea
lth
care
Care
giv
er
burd
en
Qualit
y o
f lif
e
Depre
ssio
n
CR
institu
tio
naliz
ations
Inte
rve
nti
on
ele
me
nts
Exerc
ise tra
inin
g
Case m
ana
gem
ent
Beh
avio
r m
an
age
men
t
train
ing
Indiv
idu
al skill
s tra
inin
g
Gro
up s
kill
s tra
inin
g
Indiv
idu
al gro
up
an
d
Com
bin
ed ind
ivid
ua
l/gro
up
support
and c
g c
ounse
ling
Multic
om
pon
ent
Educatio
na
l pro
gra
ms
Psychoeduca
tio
n
Des
ign
Syste
matic
revie
w o
f
RC
Ts
Syste
matic
revie
w a
nd
meta
-
ana
lysis
of
RC
Ts
Sa
mp
le
siz
e
30 s
tud
ies,
N =
345
8
30 s
tud
ies,
N =
764
Au
tho
r
(ye
ar)
Go
y e
t
al.
(2010)
Jen
sen
et
al.
(2015)
29
Res
ult
s
Respite h
ad n
o s
ignific
ant
effect o
n a
ny c
are
giv
er
outc
om
es
Respite h
ad n
o e
ffects
on C
R
institu
tiona
liza
tio
n a
nd n
o
nega
tive
effects
on C
R.
In
genera
l re
sp
ite b
enefits
CG
and C
R s
lightly, be
tter
contr
olle
d tra
ils r
eport
ed
modest
ben
efits
in
care
giv
er
outc
om
es (
CG
burd
en a
nd
menta
l hea
lth).
Hig
h
satisfa
ction in C
Gs w
as n
ote
d.
The o
vera
ll re
spite w
as
associa
ted
with h
igher
costs
and n
o o
r sm
all
positiv
e
effects
on
CG
s.
Ou
tco
me
mea
su
res
CG
outc
om
es:
Burd
en
Psycholo
gic
al str
ess a
nd h
ealth
Physic
al he
alth
Econo
mic
im
pact
Qualit
y o
f lif
e
CR
outc
om
es:
Rate
of in
stitu
tiona
lizatio
n
Mort
alit
y
Physic
al he
alth
Use o
f m
ed
ications,
Cogn
itio
n
Oth
er
aspects
of
me
nta
l fu
nction
Beh
avio
r a
nd a
ctivitie
s o
f d
aily
livin
g
Qualit
y o
f lif
e
Evid
ence o
f ab
use
Both
CG
and C
R:
Q
ualit
y o
f lif
e
P
hysic
al he
alth
M
enta
l/psycholo
gic
al he
alth
S
atisfa
ctio
n
U
tiliz
ation o
f h
ea
lth a
nd
socia
l
serv
ices
U
tiliz
ation o
f in
form
al or
volu
nta
ry s
upport
serv
ices
CG
only
:
B
urd
en
T
ime s
pent
on c
ari
ng t
asks
CR
on
ly:
In
stitu
tio
na
lisation
A
DL
Inte
rve
nti
on
ele
me
nts
R
espite c
are
A
du
lt d
ay s
erv
ices
H
ost fa
mily
In
-hom
e r
esp
ite
In
stitu
tio
na
l re
spite
V
ideo r
esp
ite
Des
ign
Syste
matic
revie
w o
f
R
CT
s
Syste
matic
revie
w o
f
R
CT
s
Sa
mp
le
siz
e
4 s
tud
ies,
N =
753
22 s
tud
ies,
N =
159
3
Au
tho
r
(ye
ar)
Maay
an
et
al. (
20
14)
Maso
n e
t
al. (
20
07)
30
Res
ult
s
Multic
om
pon
ent
inte
rventio
ns
whic
h u
sed e
ducatio
n a
nd
support
were
associa
ted
with
low
er
like
lihoo
d o
f C
R
institu
tiona
liza
tio
n (
rela
tive
risk=
0.6
7).
Physic
al activity in t
wo o
f
these f
our
stu
die
s w
as
associa
ted
with r
ed
uced
subje
ctive c
are
giv
er
burd
en
(sta
ndard
ized m
ea
n
diffe
rence =
-0.4
3,
95%
CI=
-
0.8
1 t
o -
0.0
4).
Overa
ll fe
w s
ignific
an
t eff
ects
were
fo
und
. C
ase m
an
ag
em
ent
(n=
4)
was a
ssocia
ted
with
incre
ased
supp
ort
serv
ice u
se
and e
ducatio
n (
n=
4)
with
decre
ased d
epre
ssio
n.
Psychoth
era
py (
n=
2)
de
layed
care
-recip
ient
institu
tiona
liza
tio
n a
nd
com
pute
r netw
ork
ing (
n=
1)
impro
ve
d d
ecis
ion m
akin
g.
Ou
tco
me
mea
su
res
CG
outc
om
e:
P
sycholo
gic
al w
ell-
bein
g/
mood
B
urd
en
Q
ualit
y o
f lif
e
CR
outc
om
es:
C
ogn
itio
n/
beh
avio
r/ m
ood
A
DLs
C
om
bin
ed s
cale
s
P
hysic
al do
main
Q
ualit
y o
f lif
e
In
stitu
tio
na
lization
R
estr
ain
t usag
e
M
ort
alit
y
S
ub
jective C
G b
urd
en
CR
ou
tcom
e:
In
stitu
tio
na
lization
M
ort
alit
y
B
eh
avio
r d
istu
rbances
CG
outc
om
e:
D
epre
ssio
n
S
train
S
tress
U
se o
f fo
rma
l serv
ices
Inte
rve
nti
on
ele
me
nts
M
ultic
om
pon
ent
P
hysic
al activity
(superv
ised h
om
e-
based e
ither
aero
bic
exerc
ise o
r
endura
nce tra
inin
g
of lo
w to
mo
dera
te
inte
nsity)
E
ducatio
n
C
ase m
ana
gem
ent
P
sychoth
era
py
C
om
pute
r
netw
ork
ing
Des
ign
Syste
matic
revie
w o
f
R
CT
s
Syste
matic
revie
w o
f
R
CT
s
Syste
matic
revie
w o
f
R
CT
s
Sa
mp
le
siz
e
3 s
tud
ies
4 s
tud
ies
36
stu
die
s,
N =
1930
3
Au
tho
r
(ye
ar)
Ola
zara
n
et
al.
(2010)
Org
eta
et
al. (
20
14)
Pea
co
ck
an
d
Fo
rbes
(2003)
31
Res
ult
s
Multic
om
pon
ent
an
d
psychoeducation
al
inte
rven
tions h
ad a
sm
all
but
sig
nific
an
t eff
ect on
depre
ssio
n (
n =
4,
we
igh
ted
mean
diffe
rences =
-1.9
3,
95%
CI=
-3.7
9 t
o -
0.0
7)
an
d
subje
ctive w
ell-
bein
g (
n =
5,
sta
ndard
me
an d
iffe
rences =
-0.1
6,
95%
CI=
-0.3
2,
-0.0
0).
Sup
port
inte
rve
ntions (
two
out o
f seven s
tudie
s)
had
sm
all
but
sig
nific
ant
effect
on
burd
en (
n=
2, sta
ndard
me
an
diffe
rences=
-0.4
1, 95
% C
I= -
0.8
0 t
o -
0.0
2).
Multic
om
pon
ent
inte
rventio
ns
(10 o
ut
of
12)
had p
ositiv
e
effects
on
outc
om
es b
ut
meta
-ana
lysis
was n
ot
possib
le.
The m
ost fr
equ
ently s
tud
ied
dru
g w
as d
on
epezil
(n=
16),
and N
MD
A r
ecepto
r
modu
lato
r w
as s
tudie
d in o
ne
stu
dy. U
sin
g c
ho
lineste
rase
inh
ibitors
in C
R h
ad a
sm
all
but sta
tistica
lly s
ignific
an
t
effect o
n r
ed
ucin
g b
urd
en
(avera
ge d
= 0
.18
, 95
% C
I=
0.0
4–0.3
2)
an
d c
are
tim
e
(avera
ge d
= 0
.15
, 95
% C
I=
0.0
7–0.2
4).
Ou
tco
me
me
as
ure
s
Depre
ssio
n
CG
burd
en
CG
hea
lth
Self-e
ffic
acy
Sub
jective w
ell-
bein
g
CG
Burd
en
Tim
e u
se
Psycholo
gic
al
wellb
ein
g
Healthcare
costs
Ease o
f use/
satisfa
ction w
ith t
he
inte
rven
tion
Inte
rve
nti
on
ele
me
nts
P
sychoeduca
tio
na
l
S
up
port
M
ultic
om
pon
ent
O
ther
(use o
f
exerc
ise o
r nu
tritio
n,
case
mana
ge
ment,
com
pute
r
aid
ed s
up
port
inte
rvention)
A
ntide
men
tia
dru
g tria
ls o
f
cholin
este
rase
in
hib
itors
Des
ign
Syste
matic r
evie
w
of
R
CT
s
S
yste
matic
revie
ws (
n=
3)
m
eta
-ana
lysis
(n=
3)
Syste
matic r
evie
w
and m
eta
-ana
lysis
of
R
CT
s
Sa
mp
le
siz
e
40 s
tud
ies
17
stu
die
s,
N =
474
4
Au
tho
r
(ye
ar)
Park
er
et
al. (
20
08)
Lin
gle
r et
al. (
20
05)
32
Res
ult
s
Gro
up
-based
psychoed
uca
tion
al
inte
rven
tion h
ad p
ositiv
e e
ffect
on d
epre
ssio
n (
weig
hte
d m
ean
diffe
rence=
-0.7
1, 9
5%
CI=
-0.9
5
to -
0.4
6).
Overa
ll, N
inete
en p
rogra
ms h
ad
sig
nific
an
t positiv
e e
ffects
on the
CG
, C
R o
r b
oth
. T
wo o
f n
ine
stu
die
s im
pro
ved m
oo
d. T
welv
e
of sevente
en s
tudie
s h
ad a
positiv
e e
ffect on
burd
en a
nd
com
pete
nce.
Seve
n o
f te
n
stu
die
s im
pro
ved q
ua
lity-o
f-lif
e.
Cogn
itiv
e r
efr
am
ing inte
rve
ntio
ns
were
be
neficia
l o
n r
ed
ucin
g
psycholo
gic
al m
orb
idity, fo
r anxie
ty
(sta
ndard
ized m
ea
n d
iffe
rence
(SM
D)
= -
0.2
1, 9
5%
CI=
-0.3
9 to
-
0.0
4),
su
bje
ctive d
istr
ess (
SM
D=
-
0.2
3,
95%
CI
-0.4
3 t
o -
0.0
4)
and
depre
ssio
n (
SM
D=
-0.6
6, 9
5%
CI=
-1.2
7 t
o -
0.0
5).
These
in
terv
entio
ns
show
ed n
o e
ffect
on c
op
ing
,
burd
en, or
CR
institu
tio
na
lization
.
Ou
tco
me
mea
su
res
CG
outc
om
es:
Q
ualit
y o
f lif
e
P
hysic
al/ m
enta
l h
ealth
B
urd
en o
r satisfa
ction
CR
outc
om
es:
A
DL o
r be
havio
rs
H
ealth s
erv
ice u
tiliz
atio
n
E
cono
mic
outc
om
es
C
G o
utc
om
es:
M
ood
B
urd
en a
nd c
om
pete
nce
Q
ualit
y o
f lif
e
CR
outc
om
es:
B
eh
avio
ral pro
ble
ms
A
DL
M
ood
Q
ualit
y o
f lif
e
I
nstitu
tio
na
lization
CG
outc
om
es:
P
sycholo
gic
al m
orb
idity
(depre
ssio
n a
nd a
nxie
ty)
D
istr
ess
Q
ualit
y o
f lif
e
B
urd
en
C
opin
g a
nd s
elf-e
ffic
acy
A
ppra
isal of
pro
ble
m
behavio
rs
CR
ou
tcom
es:
H
ealthcare
utiliz
atio
n
Inte
rve
nti
on
ele
me
nts
Info
rmation a
nd/o
r
support
inte
rve
ntion:
T
echnolo
gy-b
ase
d
In
div
idu
al
G
roup
-based
Dyadic
psychosocia
l
inte
rven
tions
In
form
ation
C
ase
mana
ge
ment
S
kill
s tra
inin
g
S
up
port
P
sychoeduca
tio
n
P
hysic
al activity
C
opin
g s
trate
gie
s
M
ultic
om
pon
ent
C
ogn
itiv
e r
efr
am
ing
inte
rven
tions (
gro
up
or
ind
ivid
ua
l sett
ing)
De
sig
n
Syste
matic
revie
w o
f
R
CT
s
Syste
matic
revie
w o
f
R
CT
s
Syste
matic
revie
w o
f
RC
Ts
Sa
mp
le
siz
e
44 s
tud
ies,
N =
120
5
41 s
tud
ies
11 s
tud
ies,
N =
139
2
Au
tho
r
(ye
ar)
Th
om
pso
n
et
al. (
2007)
Van
’t
Leven
et
al.
(2013)
Vern
oo
ij-
Dass
en
et
al. (
20
11)
33
Res
ult
s
Most (t
wo t
hird)
of th
ese
inte
rven
tions d
id n
ot
impro
ve
any o
utc
om
e.
How
ever,
inte
rventions
consis
tin
g o
f socia
l
support
(n=
15)
of
and
pro
ble
m s
olv
ing (
n=
21)
were
more
eff
ective
in
impro
vin
g t
he
psycholo
gic
al w
ell-
be
ing
of th
e C
G. T
his
syste
matic
revie
w w
as lim
ited
by
hete
rogen
eous s
tudy
desig
ns a
nd
qu
alit
y o
f
outc
om
e m
easure
ment.
Of th
ree s
tudie
s u
sin
g
gro
up C
BT
, on
ly o
ne
of
them
(A
kkerm
an a
nd
Ostw
ald
200
4)
dete
cte
d a
sig
nific
an
t re
ductio
n in
anxie
ty.
In A
kkerm
an a
nd
Ostw
ald
stu
dy,
anxie
ty
was the p
rim
ary
outc
om
e
measure
, an
d th
ey
exclu
de
d c
are
giv
er
wh
om
those d
em
onstr
ate
d
“insuffic
ien
t anxie
ty o
r
inte
rfere
nce w
ith
da
ily
activitie
s”.
Oth
er
inte
rventions
consid
ere
d w
ere
no
t
effective
in
reducin
g
anxie
ty in C
Gs.
Ou
tco
me
me
as
ure
s
CG
know
ledg
e
Psycholo
gic
al w
ell-
bein
g
Care
giv
er
burd
en
Socia
l o
utc
om
e
Genera
l outc
om
e
(life s
atisfa
ction,
life
qua
lity, co
pin
g)
Anxie
ty
Inte
rve
nti
on
ele
me
nts
Educatio
n
Genera
l d
iscussio
n
Socia
l su
pport
Socia
l activitie
s
Cogn
itiv
e p
rob
lem
solv
ing
Cogn
itiv
e thera
py
Cogn
itiv
e s
kill
s
Pra
ctica
l care
giv
ing s
kill
s
Record
kee
pin
g
Rela
xa
tio
n
Psychoth
era
py a
nd
counselin
g
Respite
Gro
up C
BT
Indiv
idu
al C
BT
Beh
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34
Based on the large number of reviews, the tested interventions for CGs can be
broadly grouped into five categories:
1) Psychoeducation programs: involve offering information about the disease,
resources, and services and/or also training CGs to manage problems.
2) Supportive interventions: include professional or peer-led support groups. These
groups focus on sharing feelings, ideas, challenges and successes.
3) Respite: consists of services designed to give CGs “time off” from
responsibilities; respite is either at-home or site-specific.
4) Psychotherapy: involves the establishment of a therapeutic relationship between
the CG(s) and an expert in an individual or group setting. Psychotherapy by
definition “is the informed and intentional application of clinical
methods and interpersonal stances derived from established psychological
principles for the purpose of assisting people to modify their behaviors, cognition,
emotions, and/or other personal characteristics in directions that the participants
deem desirable" (Campbell et al. 2013).
5) Multicomponent interventions are programs that combine various intervention
components including education, therapy, support, and respite.
As can be seen in these reviews, no specific interventions are highly effective for
CGs. At best the efficacy of a CG intervention is moderate (Burgio, Gaugler, and
Hilgeman 2016). However, access to an intervention can be limited due to economic,
geographic and policy barriers (Peacock and Forbes 2003; Sörensen, Pinquart, and
Duberstein 2002). Importantly, analysis of the forms of interventions used suggests that
with the exception of psychotherapeutic interventions, they are designed to address CG
problems from an extrinsic viewpoint, i.e. providing education or services from the
outside-in for CGs. The intervention in this project was designed to change the direction
of the viewpoint, and to address caregiving problems through an inside-out lens. The
goal was to design and implement an accessible intervention that could enable CGs to
use their inner strength to deal with their challenges, stress and difficult emotions
regardless of the stressors. One of the most important findings of a well-known study of
dementia CGs called Resources for Enhancing Alzheimer’s CG Health (REACH) trial
35
(Schulz et al. 2003) was that interventions which actively involve CGs in learning a skill
aimed at moderating their own behaviour had a significant effect on CGs’ depression.
1.6 Mindfulness
Mindfulness is defined as “ paying attention in a particular way: on purpose, in
the present moment and non-judgmentally” (Kabat-Zinn 2003). Mindfulness involves
cultivation of conscious awareness and curiosity on a moment-to-moment basis.
Mindfulness is training for living in the present with awareness, openness and curiosity
as the moments unfold. Through practicing mindfulness, individuals learn to see and
accept the things as they are without over-identifying or trying to change them.
Mindfulness includes a variety of formal and informal practices, all of which have a
meditative component. Formal practices include the body scan, sitting meditation,
mindful walking, breathing awareness and mindful movements which are gentle yoga
and stretches. Informal practices involve cultivating mindfulness in daily activities
throughout the day (e.g. brushing mindfully or eating mindfully) (Kabat-Zinn and Hanh
2009).
Mindfulness-Based Stress Reduction (MBSR) was initially developed in 1979 by
Jon Kabat-Zinn and colleagues for stress reduction and symptom management in
patients with chronic pain (Kabat-Zinn 1990). With origins in spiritual traditions of
Buddhism, MBSR is a nonreligious program that combines meditation practices, yoga
and education about mind-body relationship. MBSR was originally developed for
managing chronic pain, but its use has extended to many disorders and populations.
Mindfulness techniques have also been incorporated into other therapeutic interventions
including mindfulness-based cognitive therapy (MBCT), dialectical behaviour therapy
(DBT) and acceptance and commitment therapy (ACT). MBCT was created to prevent
relapse and recurrence of major depression (Segal, Williams, and Teasdale 2002). DBT
is used in the treatment of borderline personality disorder (Linehan 1993), and ACT has
36
a wide range of application from psychiatric disorders to “low life satisfaction” (Hayes,
Strosahl, and Wilson 1999).
1.6.1 Mindfulness-based cognitive therapy (MBCT)
The MBCT model for depression relapse originated in a basic cognitive model of
depression (Beck 1967). According to this model, when people are depressed, they
interpret their experiences in a more negative and biased way. These interpretations
can influence an individual’s feelings about a given situation and therefore maintain
depression over time. For example, if a friend fails to return an invitation to a party right
away, then a depressed person may think “they don’t care about me. I’m not important
for my friends and nobody likes me”. This cognitive model suggests that these
interpretations affect emotion which in this case is sadness and this emotion can
perpetuate depression. Alternative responses such as “I wonder if they are busy and it’s
too soon to get a response to my invitation. Let’s give them a call and find out what’s
happening” can put the person in a more positive mood state. However, according to
this model, when a person is depressed, her thoughts are in line with highly negative,
global, and self-critical beliefs about the self, the world, and the future. Responses to
different situation are made based on such beliefs and the produced thought and
emotion may intensify and perpetuate depression. In addition to negative interpretation,
two other factors make depressive persons vulnerable to relapse including cognitive
reactivity and ruminative thinking. Cognitive reactivity is the tendency in formerly
depressed patients to react to mild changes in mood with large changes in thinking
compared to never-depressed individuals (Segal et al. 2006). For example, formerly
depressed individuals react more negatively and endorse more negative attitudes to a
sad piece of music compared to never-depressed persons who do not have this
cognitive reactivity. The cognitive reactivity has been explained by “differential activation
hypothesis” (Teasdale 1988). Differential activation hypothesis suggests that in an
individual with a depressive episode, over time patterns of associations are made
between thoughts and moods. For example, negative thoughts are linked to sad moods.
37
In addition, sad moods have the power to reactivate these patterns even after the
resolution of the depressive episode, making formerly depressed individuals vulnerable
to relapse and highly reactive to even mild sadness. Ruminative style of thinking
focuses passively on the cause, meaning and consequences of one’s problem which
can prolong depression and impair problem solving (Nolen-Hoeksema 1991). The
combination of cognitive reactivity and ruminative style of thinking are proposed as the
central elements of vulnerability to depressive relapse, as described by Segal and
colleagues (Segal, Williams, and Teasdale 2002):
“At times of lowering mood, old, habitual patterns of cognitive processing
switch in relatively automatically. This has two important effects. First,
thinking runs repeatedly around fairly well-worn “mental grooves,” without
finding an effective way forward out of depression. Second, this thinking itself
intensifies depressed mood, which leads to further thoughts. In this way,
through self-perpetuating vicious cycles, otherwise mild and transient mood
can escalate into more severe and disabling depressed states.”
1.6.1.1 Modes of mind
The basic concept that is core to MBCT is “modes of mind”. It is suggested that
the mind processes information and interacts with the world through different methods.
The two modes of mind discussed here are “doing mode” and “being mode”.
1.6.1.1.1 Doing mode
Doing mode is goal oriented; its job is to achieve certain goals the mind has set.
These goals can be related to the external world including finding a job, purchasing a
house or finishing a project, or internal world such as being happy, not making mistakes
or being a good person (Segal, Williams, and Teasdale 2002). Doing mode is highly
oriented to monitor discrepancy. Doing mind is switched on when it senses a
discrepancy between the current state and the desired or ideal state. When doing mind
38
finds a mismatch between how things are and how they should be, the individual makes
problem-solving attempts to reduce the discrepancy and attain what is desired. When
the mind enters this mode to achieve a goal, if the goal can be attained, the individual
may exit doing mode. However, if actions cannot be taken to achieve the goal or if the
desired end-result is not attained, the mind can become trapped in doing mode, going
round and round to find solutions, dwelling on the discrepancy and rehearsing possible
ways to reduce it. Without the ability to take action, the possible solutions have no use.
Therefore, the mind puts into action a negative, self-perpetuating cycle that limits the
person’s capacity to see beyond the problem. These automatic patterns of doing mode
increase an individual’s vulnerability to cognitive reaction and rumination (Dimidjian,
Kleiber, and Segal 2010; Segal, Williams, and Teasdale 2002).
1.6.1.1.2 Being mode
Being mode is an entirely different way of interacting with experiences (Segal,
Williams, and Teasdale 2002). In this mode, the individual focuses on the present
moment rather than monitoring and evaluating the present state in comparison with the
past or the future. Contrary to doing mode which is goal-oriented, the focus of the being
mode is accepting and allowing the present state, without any immediate pressure to
change it. When a person is in doing mode, she is thinking about or processing a goal
or a problem, however, when an individual is in being mode, she is experiencing the
present moment without analyzing it. Instead of trying to achieve a goal, being mode
accepts the present for what it is and does not try to change it in any direction. In other
words, in being mode, attention is no longer narrowly focused only on those aspects of
the present which serve the goal-achieving process. Therefore, it is in the being mode
that the present can be experienced in its fullness and richness. For example, being
mode is experienced by a musician who becomes so absorbed in her music that she
has a moment-by-moment awareness of each note, her thoughts similarly occur each
moment without effort, then they pass away and become replaced by the next thought
(Segal, Williams, and Teasdale 2002; Dimidjian, Kleiber, and Segal 2010).
39
Both modes of mind are necessary for daily living. In doing mode, we often look
at future consequences of different actions, predict what might happen if we reach our
goal or solve the problem, or look back to memories when we had similar experiences
to get ideas of how to proceed now. The approach of learning from the past and
applying it to the future enables us to achieve goals, plan strategies, analyze and solve
problems. Doing mode can work well for achievable goals and solvable problems.
However, it can become problematic when an individual uses it repetitively to find a
solution to unanswerable problems. A person can spend much time in the endless loops
of doing mode between travelling forward to the future and backward to the past,
without experiencing and appreciating the present moment. Also doing mode enables
us to perform complex tasks (i.e. driving), without needing to think about how to do each
distinct components of the activities which is referred as “automatic pilot” mode.
Operating in automatic pilot mode gives us the advantage to do a range of complex
activities and tasks. However automatic pilot state acts without awareness of the
present moment, and if an individual operates in this mode most of the time, the
habitual tendency for unawareness may dominate the mind which causes difficulties if
applied to thoughts and feelings. Unaware of the present moment, the individual can
become preoccupied with the past or the future (Crane 2004). By contrast in being
mode, the mind entirely focuses on the moment-by-moment experience which allows
full engagement in the present moment.
The concept of modes of mind forms a framework for MBCT. The goal of MBCT
is to embody these concepts. Throughout the 8-weeks of the MBCT program, the
trainee learns how to use mindfulness as an asset to switch off the automatic pilot mode
and let the being mode into action to get a more mindful stance toward the present
moment. Recognizing modes of mind and stepping out of doing mode into being mode
needs instruction and practice. Throughout the program, the instructor guides
participants to come back to and focus on the present moment through different
practices of in-class meditation, exercises and homework. A central goal of MBCT is for
participants to achieve the ability to identify and differentiate doing and being mode of
mind and the skill to disengage from the habitual, automatic and reactive responses and
40
to redirect their attention in the present moment with an intentional and non-judgmental
stand.
1.6.2 Features of MBCT
Throughout the eight weekly sessions of MBCT, mindfulness is practiced within
the context of working directly with thoughts, emotions and bodily sensations. In this
section, each session will be described briefly.
Session 1 introduces the concept of the automatic pilot of the mind and continues
with the first mindfulness exercise of the course which is eating a raisin. The purpose of
this exercise is to allow participants to experience a new way of looking at a habitual
activity such as eating. The instructor provides each participant with a raisin and invites
them to observe the raisin with each sense (sight, smell, touch and taste) and become
aware of the thoughts, emotions and bodily sensations that occur when eating the
raisin. Following each exercise, the instructor guides an “inquiry” into participants’
experiences with the exercise, i.e. the experience of eating in a new way other than the
automatic habitual way. The next exercise of the first session is the body scan which
includes focusing deliberate attention on different parts of the body. The ability to focus
intentionally on one thing with full attention and without distraction gives the individual
the power to step out of automatic pilot. Home practice is assigned at the end of the
session which includes mindful eating and body scan. Participants also are asked to
bring as much awareness as they can to their daily life activities (e.g. brushing teeth,
showering).
In session 2, in addition to a body scan, the theme of “mindfulness of the breath”
is introduced to participants through the sitting meditation exercise. In this exercise, the
instructor guides the participants to use their breath as an anchor into the present
moment and connection with their bodily sensations. Participants also are invited to
bring awareness to pleasant experiences and record them in a “pleasant experiences
41
calendar”. In this calendar, each experience with bodily sensation, mood/feeling and
thoughts that emerge are recorded.
In session 3, the mindfulness of breath is practiced through different exercises
including sitting meditation and mindful movements. In addition to formal meditation
exercise in this session, participants are guided through a mini-meditation exercise
called the 3-minute breathing space which gives the participant the ability to gather their
scattered mind and respond less reactively and more skillfully to difficult emotions when
they arise. The other exercise of this session is recording the unpleasant events in an
“unpleasant experiences calendar” similar to the pleasant experiences calendar.
In session 4 participants are introduced to the concept of aversion. Aversion is
defined as “the drive to avoid, escape, get rid of, numb out from or destroy things we
experience as unpleasant ” (Teasdale, Williams, and Segal 2013). The doing mind gets
its power from aversion and keeps individuals caught in negative emotions. A core goal
of week 4 practice is to train participants to unlearn the habit of avoiding unpleasant
experiences. The exercises of this week include mindful walking and sitting meditation
with the theme of seeing negative thoughts with less aversion.
In session 5, the exercises are centred on the theme of “allowing things to be as
they already are” which empowers participants to better deal with aversion. By allowing
experiences to be as they are, without trying to change them, aversion loses its power
over the individual. Exercises (i.e. breathing space mediation) provide a space for
participants to practice the concept of allowing and letting be.
In sessions 1-5, the goal is to build a foundation of awareness and kindness
through formal practices of mindfulness. Weeks 6-8 focus on training participants to
learn how to take care of themselves using the mindfulness skills they have learned.
Session 6 explores the theme of “seeing thoughts as thoughts”. This concept is
intertwined with previous exercises; but in this session, participants practice exploring
the ways they interpret situations and form their responses. They also practice seeing
thoughts as mental events as opposed to facts.
42
Sessions 7 and 8 focus on “taking care of self”. Participants practice how to put
the mindfulness qualities they have learned into action. They also get the opportunity to
personalize their mindfulness training into their needs and use it skillfully to manage
their responses in different situations. They also will be helped to identify ways they
want to continue their mindfulness practices. At the end of session 8, all participants get
a chance to reflect on their experience with the course and provide their feedback.
1.6.3 Benefits of mindfulness
Studies have shown that practicing mindfulness has a positive effect on
emotional regulation in the brain (Corcoran et al. 2010; Farb et al. 2010). Corcoran
suggests that mindfulness meditation which promotes metacognitive awareness
decreases rumination, improves attentional capacities in working memory and results in
cognitive gains. These cognitive gains, in turn, result in effective emotional regulation
strategies. It also has been shown that mindfulness is negatively correlated with
rumination and is directly associated with effective emotional regulation (Chambers, Lo,
and Allen 2008). Chamber and colleagues (2008) studied a non-clinical group of 20
novice meditators who attended a 10 day intensive mindfulness meditation retreat and
compared them to a waitlisted control group. Participants were assessed on
mindfulness, rumination, affect, and performance on tasks of attention switching,
sustained attention and working memory. Results showed that the meditation group had
significant improvement in self-reported mindfulness, negative affect, depressive
symptoms, and rumination compared to the control group. The meditation group also
demonstrated significantly better working memory capacity and greater ability to sustain
attention during the performance task compared to the control group.
Ramel and colleagues (2004) studied 23 individuals with a previous history of
depression in a within-subject design, assessing participants before and after the MBSR
course on affective disturbances, dysfunctional attitudes, and rumination. A subset of
these participants was compared to 11 waitlisted controls. Within-subject results
showed reduction in affective disturbances, dysfunctional attitudes, and rumination in
43
the MBSR group. MBSR participants also had a significant reduction in rumination
compared to the control group.
A meta-analysis (Hofmann et al. 2010) assessed the effectiveness of
mindfulness-based therapies on depression and anxiety in 39 studies with a total of
1,140 participants. Results suggested that mindfulness meditation was effective in
decreasing anxiety and depression with a large effect size (Hedges’ g of 0.97 and 0.95
respectively) in clinical populations and a moderate effect size (Hedges’ g = 0.63 for
anxiety and Hedges’ g = 0.59 for mood symptoms) in nonclinical populations. For 19 of
these studies that assessed depression and anxiety in long-term follow-ups, moderate
effect sizes (Hedges’ g = 0.60 for both anxiety and depression) were found which
supports the effectiveness of mindfulness interventions.
In another study, functional MRI (fMRI) was used to compare neural reactivity to
sadness provocation in participants who participated an 8-weeks MBSR course (Farb et
al. 2010). In this study film clips were used to provoke sadness and MBSR trainees
were compared to a waitlisted control group on self-report measures of depression,
anxiety, and psychopathology and neural reactivity measured by fMRI. Results
demonstrated that the MBSR group showed significantly less anxiety, depression, and
somatic distress compared to the control group. fMRI results indicated that the MBSR
group had less neural reactivity compared to the control group. A different neural
reactivity also was detected by fMRI while watching the film clips in MBSR participants
after the mindfulness training.
Erisman and Roemer (2010) studied emotional experience and regulation in
response to distressing, positive, and affectively mixed film clips after a brief 10-minute
mindfulness training. Mindfulness participants reported significantly greater positive
affect after watching the positive film clip and greater adaptive regulation after watching
the affectively mixed clips compared to a control group.
In another study, Jha and colleagues (2010) examined the effects of mindfulness
training on working memory capacity and affective experience. This study had three
groups: one military mindfulness group, one military control group and a group of
civilians. Both of the military groups were experiencing the highly stressful
predeployment interval. The mindfulness course was an 8-week “Mindfulness-Based
44
Mind Fitness Training” which is similar to MBSR with additional topics specific to the
military population. Findings demonstrated that working memory capacity stayed stable
in the civilians and decreased in the non-mindfulness military group. However, it
increased in the mindfulness participants with high amounts of meditation practice.
Higher mediation practice time also was associated with lower levels of negative affect
and higher levels of positive affect. These findings suggest that adequate mindfulness
meditation practice may improve working memory capacity which can be protective
against functional impairments that may happen during high-stress contexts.
Mindfulness meditation also enables individuals to become less
reactive/impulsive (Goldin and Gross 2010; Siegel 2007; Ortner, Kilner, and Zelazo
2007; Cahn and Polich 2006) and gain more cognitive flexibility (Moore and Malinowski
2009; Siegel 2007). With mindfulness practice a new skill of self-observation develops
which enables individuals to disengage automatically coupled pathways from prior
learning. This ability opens a new path for experiencing each present moment free from
habitual responses (Siegel 2007). Mindfulness also activates parts of the brain which
are correlated with more adaptive response to negative or stressful events (Davidson et
al. 2003).
Moore and Malinowski (2009) compared a group of experienced mindfulness
meditators with a meditation-naïve control group to evaluate the correlation between
mindfulness meditation, self-reported mindfulness, cognitive flexibility and attentional
functions including the ability to focus and eliminate distracting information. Results
showed that the meditator group performed significantly better on all measures of
attention and had higher self-reported mindfulness. These findings suggested that
mindfulness is correlated with the improvement of attentional functions and cognitive
flexibility.
In another study (Ortner, Kilner, and Zelazo 2007) the effect of mindfulness on
attentional control was evaluated in emotional contexts. Participants with different
amounts of mindfulness practice (from one month to 29 years) were shown pleasant,
unpleasant, and neutral pictures in random order. After showing each picture, a high- or
low-pitched tone was presented. By pressing a button, participants determined whether
the tone was low or high. “Emotional interference then was calculated separately for
45
pleasant and unpleasant pictures by subtracting the mean reaction times to tones for
neutral pictures from the mean reaction times for pleasant and unpleasant pictures”.
Results showed that mindfulness experience was inversely linked to emotional
interference while viewing unpleasant pictures. These findings suggested that
mindfulness practice may enable individuals to disengage emotionally from unpleasant
stimuli and maintain attention on current tasks. Ortner and colleagues (2007) in a follow-
up study, assigned participants to either a 7-week training in mindfulness meditation,
relaxation meditation, or a waitlist control group. The mindfulness group demonstrated
less emotional interference from unpleasant pictures compared to other groups. Results
of these studies support the idea that mindfulness practice reduces emotional reactivity.
Goldin and Gross (2010) evaluated the effect of MBSR training on emotional
reactivity and regulation of negative self-beliefs among individuals with social anxiety.
Pre and post training, changes in brain activities of participants were assessed using
fMRI while they were reacting to negative self-beliefs and while regulating negative
emotions using two types of attentional tasks. Post-training, participants’ anxiety,
depression and self-esteem improved compared to baseline. They also showed
reduced negative emotional experiences, decreased amygdala activity, and increased
activity in brain regions related to attentional deployment.
Mindfulness also has a positive correlation with self-compassion and empathy
(Birnie, Speca, and Carlson 2010; Shapiro et al. 2005; Shapiro, Brown, and Biegel
2007). Self-compassion is defined as “being kind and understanding toward oneself in
instances of pain or failure rather than being harshly self-critical; perceiving one’s
experiences as part of the larger human experience rather than seeing them as
isolating; and holding painful thoughts and feelings in mindful awareness rather than
over-identifying with them” (Neff 2003). Mindfulness elements including awareness of
inner experiences such as suffering or non-judgemental attitudes of acceptance are pre-
requisites for compassion for self. Self-compassion is a healthy attitude toward oneself
which is associated with higher life satisfaction, decreased risk of anxiety and
depression (Neff 2003).
In addition, it has been shown that mindfulness has positive effects on
interpersonal behaviours. Data indicates that trait mindfulness enhances relationship
46
satisfaction, helps individuals to respond to relationship stresses constructively and
gives them the ability to identify conflicts and negativity and communicate better during
discussions (Barnes et al. 2007). Mindfulness is also protective against the negative
emotional effects of relationship conflicts and enables individuals to express themselves
in different social situations (Barnes et al. 2007; Dekeyser et al. 2008).
Mindfulness practices are associated with promoting functions of the middle
prefrontal lobe of the brain including self-insight, morality, intuition and fear modulation
(Siegel 2009, 2007). Mindfulness also is negatively associated with activity of amygdala
which is critically involved in fear processing responses (Way et al. 2010). Other
benefits of mindfulness practice include improved well-being (Carmody and Baer 2008)
and reduced psychological distress (Coffey and Hartman 2008). Mindfulness practices
also are associated with increased information processing speed (Moore and
Malinowski 2009), decreased task effort, increased attention and fewer distractions
while doing a task at hand (Lutz et al. 2009).
1.7 Mindfulness studies
So far two main mindfulness programs, MBSR and MBCT, have been studied as
approaches for reducing stress and managing symptoms and emotional challenges in
different populations and for different disorders including anxiety (McManus et al. 2012;
Williams et al. 2011; Piet et al. 2010; Evans et al. 2008), bipolar disorder (Deckersbach
et al. 2012; Perich et al. 2013; Howells et al. 2012; Williams et al. 2008; Stange et al.
2011), borderline personality disorder (Huss and Baer 2007; Sachse, Keville, and
Feigenbaum 2011), depression (Eisendrath, Chartier, and McLane 2011; Barnhofer et
al. 2009; Chiesa, Mandelli, and Serretti 2012; Manicavasgar, Parker, and Perich 2011;
Crane et al. 2012; Segal et al. 2010), eating disorders (Alberts, Thewissen, and Raes
2012; Baer, Fischer, and Huss 2005; Kearney, Milton, et al. 2012), psychosis (Langer et
al. 2012), sleep problems (Britton et al. 2012), arthritis (Pradhan et al. 2007), asthma
(Pbert et al. 2012), cancer (Hoffman, Ersser, and Hopkinson 2012; Garland et al. 2013),
chronic pain (Rosenzweig et al. 2010), fibromyalgia (Schmidt et al. 2011; Sephton et al.
47
2007), heart disease (Robert McComb et al. 2004; Tacón et al. 2003), HIV (Duncan et
al. 2012; Gayner et al. 2012), irritable bowel syndrome (Kearney et al. 2011), insomnia
(Gross et al. 2011), intimate partner violence/abuse (Bermudez et al. 2013), psoriasis
(Kabat-Zinn et al. 1998), Posttraumatic stress disorder and trauma (Kearney,
McDermott, et al. 2012; Niles et al. 2012), somatization disorder (Fjorback et al. 2013),
stroke and traumatic brain injuries (Johansson, Bjuhr, and Rönnbäck 2012; Azulay et al.
2013), substance abuse disorders (Lange 2011; Vallejo and Amaro 2009) and diabetes
(Rosenzweig et al. 2010; Whitebird, Kreitzer, and O’Connor 2009).
MBSR and MBCT have also been studied in a variety of populations including
elderly (Smith, Graham, and Senthinathan 2007; Splevins, Smith, and Simpson 2009),
healthcare clinicians and students (Rimes and Wingrove 2011; Hopkins and Proeve
2013; Bazarko et al. 2013), pregnant women (Dunn et al. 2012), adolescents (Biegel et
al. 2009; Sibinga et al. 2013), prisoners (Samuelson et al. 2007), smokers (Davis et al.
2007), teachers (Gold et al. 2010), organ transplant recipients (Gross et al. 2010),
parents (Bailie, Kuyken, and Sonnenberg 2012), children (Semple et al. 2010; Lee et al.
2008) and CGs of children with chronic conditions (Minor et al. 2006).
1.7.1 Mindfulness studies among dementia CGs
Despite a large number of mindfulness studies in the last decades, few studies
have evaluated MBCT and MBSR programs in the CG population.
Oken et al. (2010) evaluated the effect of a face-to-face mindfulness intervention
adapted from MBCT for dementia CGs in a pilot controlled trial study. 31 participants
were randomized into three groups: one active intervention adapted from MBCT which
consisted of 7 weekly 90 minute sessions, one active intervention dementia education
class and a respite-only intervention group. Participants were compared on self-rated
and physiologic markers of stress. The findings showed high completion rate and
adherence to the intervention. Both mindfulness and education interventions had a
positive effect on perceived stress. Mindfulness intervention also improved self-efficacy
48
among participants. Physiologic measures including salivary cortisol and self-reported
sleep showed no change.
Epstein-Lubow and colleagues (2011) assessed the effects of a face-to-face
mindfulness intervention adapted from MBSR among family CGs of frail elderly in a pilot
study with a one group pre-test, post-test design. Nine female CGs received the
mindfulness training in 8 weekly 90-minutes sessions and measures of depressive
symptoms, burden, perceived stress, anxiety, general health, and mindfulness were
assessed at baseline, at the completion of the intervention, and at a 1-month follow-up.
Results showed a reduction in self-reported depression, perceived stress, and burden at
post-intervention, with a further decrease at 1-month follow-up for stress and burden
while the depression score returned to the baseline level. Findings also demonstrated
improvement in mindful attention and calmness after the intervention. Qualitative results
showed that CGs desired to continue their mindfulness practices and gained personal
benefits from the intervention. Even though, this study suggests positive effects of
mindfulness training among CGs, the generalizability of the results are limited due to the
small sample size, inadequate power and absence of a control group.
In another study, O’Donnell (2013) evaluated the effectiveness of a face-to-face
MBSR program for dementia family CGs, compared to an intervention based on
progressive muscle relaxation (PMR). 28 CGs were randomized to either group and
were assessed for stress, depression, self-compassion, mindfulness and physiologic
measures including salivary cortisol and systolic blood pressure at baseline, post-
intervention and 8-week follow-up. Results showed more significant reductions in levels
of depression and isolation in MBSR participants at post-intervention. Both groups
showed similar improvement in self-compassion and mindfulness; and a similar
reduction in physiologic measures including awakening cortisol levels, cortisol
awakening response, daily average cortisol and resting systolic blood pressure at post-
intervention. Due to the small sample size and absence of a control group, power and
generalizability were limited. However, the results suggest that MBSR and relaxation-
based interventions may benefit CGs of dementia patients by reducing psychological
and physiologic indices of chronic stress.
49
Whitebird et al. (2013) assessed the efficacy of a face-to-face MBSR program in
comparison to an active control group using education and social support for family CGs
of dementia patients. 78 CGs were randomly assigned to either group and were
assessed for stress, depression, anxiety, overall mental health, CG burden and social
support at baseline, post-intervention and 6-month follow-up. They found that MBSR
was a feasible and acceptable intervention for CGs based on their recruitment and
retention rate. Results demonstrated that MBSR was more effective than the control
intervention in improving overall mental health, reducing stress, and decreasing
depression post-intervention. Both groups showed improvement in anxiety post-
intervention which remained at the 6 months follow-up. Neither group showed a
difference in CG burden and social support. This study with and adequate sample and
enough power provided evidence for short-term positive effects of MBSR. However, the
long-term effectiveness of MBSR was not established.
In a pilot randomized controlled trial, Brown and colleagues (2015) studied the
effects of a face-to-face MBSR program in comparison to a social support control
intervention in family CGs of individuals with dementia. 38 family CGs were randomly
assigned to either group and were assessed for diurnal salivary cortisol, perceived
stress, mental health, experiential avoidance, CG burden, and relationship quality at
baseline, post-intervention and 3-month follow-up. Results demonstrated significant
improvement in perceived stress, tension, and anger in the MBSR group compared to
the control group at post-intervention, but these effects were not maintained at 3-month
follow-up. CG burden and diurnal cortisol response did not show any change in both
MBSR and control groups.
These studies provide evidence for effectiveness of face-to-face mindfulness
intervention among family CGs of individuals with dementia. Findings regarding positive
effects of practicing mindfulness on stress and depression are consistent across these
studies. However, effects on other psychological and physiologic indices of chronic
stress are inconsistent and need further research. In addition, CGs experience
significant demands on their time and attention which can prevent them from attending
face-to-face interventions. In addition, due to lack of time and busy lifestyle of CGs,
50
geographic and economic barriers, access to these programs can be limited. These
accessibility limitations can be addressed by using the Internet as the delivery method
for the intervention which has the benefits of easy access, low cost, and high
availability.
Internet-based mindfulness programs have been used for a variety of disorders
including epilepsy (Thompson et al. 2010), anxiety disorders (Boettcher et al. 2014),
fibromyalgia (Davis and Zautra 2013) and smokers (Davis et al. 2015). In these studies,
mindfulness training was delivered using a self-directed unguided online course with or
without a discussion board which was feasible and effective. Even though a self-
directed online mindfulness intervention might be effective, assessing the engagement
of the participants and maintenance of their motivation is difficult. These factors can be
evaluated more readily during live interactive online interventions. To our knowledge, a
live interactive online space for mindfulness training has never been used for any
population, and no study has evaluated the effectiveness, acceptability and feasibility of
such a method.
The present study is a randomized controlled interventional and a feasibility
study that compared an MBCT intervention in a live interactive online setting (tele-
MBCT) with a usual-care control group among family CGs of individuals with dementia.
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2 Chapter 2
Hypotheses and Research Aims
Caring for a family member with a major neurocognitive disorder can be all
consuming and affect every aspect of a CG’s life. Major neurocognitive disorder may
develop in an individual unexpectedly, and a family member may become a CG without
choice or preparation. Having the responsibilities of caregiving invites different kinds of
stressors into a person’s life. These stressors include CR’s BPSD, ambiguous loss,
work and family conflicts and financial strains among many others. Once a CG
experiences these stressors, she first appraises whether these demands cause a
potential threat and whether she has adequate coping skills and capacities to handle
them. If she perceives these stressors as threatening and her coping skill and resources
as inadequate, she will experience stress. The experience of stress contributes to
negative emotional, behavioural and physiological responses that can expose the
individual to the risk of mental, physical and social consequences. The stressors,
primary appraisal, perceived stress, emotional and behavioural responses can create
feedback loops, meaning each negative emotional or behavioural response can affect
earlier stages of perceived stress and primary appraisal or the stressor itself. In a CG’s
life, these negative loops can happen repeatedly unless the CG acquires skills to
improve her/his appraisal of the stressors and adaptive capacities which can break the
negative feedback loops. Providing CGs with the skill to appraise their stressors with
awareness, acceptance and without negative judgment or over-identification can
improve their perspective on perceiving stress which, in turn can change their appraisal
and eventually their emotional and behavioural responses in a more positive way.
Mindfulness is “paying attention in a particular way: on purpose, in the present moment
and non-judgmentally”. Through training in mindfulness, individuals learn to use their
52
internal resources to manage their responses to stress regardless of the stressors.
Once mindfulness skills are learned, CGs can use them every day to reduce the
negative emotional responses which underpin different negative health consequences
of caregiving.
Caregiving responsibilities together with other life duties can limit the CG’s ability
to attend programs due to lack of time to travel, geographic and economic barriers.
These limitations, however, might be addressed by using an Internet-based program
which has the benefits of easy access, low cost, and high availability. In this study, we
designed an MBCT intervention that can be delivered by a trained MBCT therapist, in a
live, online, interactive group format (tele-MBCT) for family CGs of dementia patients.
2.1 Aims
1. To evaluate the feasibility and acceptability of tele-MBCT among family CGs.
2. To evaluate the effectiveness of tele-MBCT in improving stress, depressive
symptoms, anxiety, self-compassion and cultivating positive coping strategies in
family CGs managing dementia at home.
2.2 Hypotheses
1. Tele-MBCT will be feasible for and acceptable to family CGs.
2. Tele-MBCT will have a positive effect on the level of stress, anxiety, depressive
symptoms, self- compassion and coping strategies in family CGs providing care
for a family member with dementia.
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Chapter 3
Design and methods
This project was a randomized, controlled, non-blinded, intervention study and a
feasibility study designed to evaluate the feasibility of delivering MBCT in a live, online
interactive format and its effectiveness in moderating psychological distress in family
CGs of persons with dementia.
The study was conducted in Toronto, Ontario, at the Cyril and Dorothy, Joel and
Jill Reitman Centre for Alzheimer's Support and Training, Sinai Health system, during
the years 2016–2017, with recruitment occurring from October 2016 to October 2017. It
was reviewed and approved by the Mount Sinai Hospital Research Ethics Board (REB).
Participants
Participants were self-identified family CGs who were actively providing care for
a person living in the community with a medically confirmed diagnosis of dementia.
3.1.1 Inclusion Criteria
Self-identification as a CG for a family member diagnosed with a major
neurocognitive disorder
English literacy
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Access to the Internet
Basic familiarity with using a computer or a tablet (being able to check/send
email and download files)
Scoring at least three on the Single-item measure of self-perceived stress
Agreeing not to engage in any formal community-based CG support programs,
mind-body programs, or psychotherapy until they have completed training and
follow-up evaluations
Having time to attend the eight-week intervention program (Wednesday
afternoon for 2 hours)
3.1.2 Exclusion Criteria
Insufficient computer skills
Active ideas of self-harm or suicidality
Recent psychiatric diagnosis - major depression, anxiety disorder, psychosis,
or bipolar disorder
Active substance misuse
Having started a new psychotropic medication within three months before
entry into the study
Having involved in formal, professionally led meditation, yoga, or tai chi
programs in the previous year
Recruitment
Potential participants were recruited through a variety of strategies:
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3.2.1 ENRICHES project
Engagement to Reduce Isolations of CGs at Home and Enhancing Seniors
(ENRICHES) is a multisite project spearheaded by the Reitman Center, Sinai Health
System. In addition to Reitman Center, four other sites including Alzheimer Society
of Toronto, Canadian Mental Health Association, North York Community House,
WoodGreen Community Services are involved in ENRICHES which is designed to
create, implement, scale, and evaluate an integrated approach to reducing social
isolation in senior CGs aged 55 and up. At the beginning of the study after getting
REB approval, researcher (SZ) met with all ENRICHES project managers regarding
the study and recruitment potentials at their sites. They all agreed to advertise for
and refer suitable individuals to the project. Aside from this, the ENRICHES team did
not have further involvement in the process.
3.2.2 Collaborating Institutions (memory clinics)
The second source of recruitment was through memory clinics. After negotiation
with different memory clinics’ directors and social workers, they agreed to refer
potential CGs to the project. The collaborating memory clinics were Toronto Western
Hospital, Bridge point hospital, CAMH, Toronto Rehabilitation Institute (TRI) and
Toronto Memory program.
3.2.3 Online advertisement
The online advertisement included posting the poster and flyer of the study on
Facebook, and websites of the Alzheimer Society of Toronto and Reitman Center.
The flyer of the project also was emailed to recent graduates of Reitman center
programs.
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3.2.4 Flyer and Brochure
Posters and flyers were posted and distributed at different hospitals, memory
clinics and other organizations including Mount Sinai Hospital (main building and 60
Murray Street), Toronto General Hospital, Prince Margaret Hospital, Toronto
Rehabilitation Institute, Toronto Western Hospital, Baycrest Hospital, Alzheimer
Society of Toronto, North York Community House and WoodGreen Community
Services.
3.2.5 Word of mouth
Individuals were referred to the study by family or friends who thought this study
might be of benefit to them.
Study Design
Interested individuals called the research administrator at the number provided
on the study poster and brochure. After the telephone screening, the eligible individuals
were scheduled for an in person meeting (V1). Once accepted to the study, each
participant was randomly assigned to either the tele-MBCT group or a usual care control
group. All participants completed additional assessments at post-intervention (V2) and
follow-up (V3) (Figure 3).
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3.3.1 Sample size
The sample size was calculated to provide 80% power to detect a moderate
difference (d = 0.61) between the tele-MBCT and control groups; this effect size was
based on a previous study which used a face-to-face mindfulness based stress
reduction for family CGs of dementia patients (Whitebird et al. 2013). This power
analysis with an alpha of 0.05 indicated that 33 participants would need to be recruited
into each group.
3.3.2 Telephone screening
The researcher (SZ) contacted interested individuals by phone and thoroughly
informed them of the details of the background and purpose of the study. Those
interested in proceeding further were screened for eligibility by asking screening
questions (based on the inclusion/exclusion criteria). Eligible individuals were then
scheduled for an in-person visit. Ineligible contacts were thanked for their interest
explained why the study was not suitable for them, and their data was deleted.
3.3.3 Randomization
Eligible subjects were randomly assigned to either intervention (tele-MBCT) or
control groups using an online randomization program
(http://www.graphpad.com/quickcalcs/index.cfm). A research associate otherwise
blinded to the study used this program to assign 26 subjects into two groups. He
labelled each subject as either “mindfulness” or “control” and inserted the assignment
into individually sealed envelopes which he sequentially numbered, and passed on to
the researcher (SZ).
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3.3.4 Informed Consent and Pre-intervention assessment (V1)
In first visit V1, the researcher (SZ) met participants at Mount Sinai Hospital or an
agreed upon location (e.g. a coffee shop close to their home). In this visit, they were
provided with more detailed information about the study and a full explanation of the
participant's role. Then informed signed consent was obtained. After consent, the
randomization envelope was opened following which pre-intervention assessments
were completed. Participants randomized to the intervention group were scheduled for a
group, then they were introduced to Zoom and informed about their upcoming online
training with the researcher (SZ).
3.3.5 Post-intervention assessment (second visit V2)
Intervention group completed post-intervention questionnaires upon completion
of the last tele-MBCT session. Control group completed post-intervention
questionnaires 8 weeks after V1.
3.3.6 Follow-up assessment (third visit V3)
Both intervention and control participants completed follow-up questionnaires
four weeks after post-intervention assessment (V2).
3.3.7 Reimbursement
All participant received a copy of a book called “The Mindful Way Workbook”.
Intervention group received the book at the beginning of the study and the control group
at the conclusion of the study. Upon completion of the study, all participants also
received a $50 gift card.
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Recruitment
Phone Screening
Informed consent
Randomization
Control Group
Post-intervention assessment, V2
Pre-intervention assessment
V1
tele-MBCT Group
Zoom Training (online)
Interview with the instructor
8 tele-MBCT weekly sessions
Follow-up assessment, V3
8 Weeks
4 Weeks
Figure 3 Flow diagram of the study
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3.4 Procedures
3.4.1 Tele-MBCT group
Tele-MBCT was an 8-week program delivered to participants online via a
videoconferencing program called Zoom. Before starting the tele-MBCT program,
participants had a Zoom training, were given a mindfulness package and had an online
intake interview with the tele-MBCT instructor.
3.4.1.1 The online technology: Zoom
Zoom is a PHIPA compatible videoconferencing program that provides remote
communication for one-to-one or group meetings, webinars and conferences. It is
compatible with most new devices including PCs, laptops, tablets and mobiles. Signing
up, one-to-one meetings and attending a meeting as an invitee are free. The host of a
group meeting is charged a monthly fee (CAD 14.99-19.99). In this study, we used the
Reitman center account for hosting the meetings, and all participants were invitees.
Before starting the intervention, each participant’s device was checked for compatibility
with Zoom. If the device was not compatible, a tablet was loaned to the participant for
the duration of the training. The researcher (SZ) then instructed them on how to use the
program. Before each session, the host emailed the Zoom link to individuals. At the
scheduled time of each group session, participants joined the live streamed session via
their computers by using the link and following the on-screen instructions. During the
live sessions, each participant was able to see, hear and speak with the group leader
and other group members and they each could mute/unmute, turn on/off video, send
messages via chat box and leave the session at any time if necessary.
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3.4.1.2 Zoom training
Participants in the Tele-MBCT group received an email from the researcher (SZ)
to schedule the online Zoom training. On an agreed upon date and time, SZ started a
Zoom meeting by emailing the invitation link to the participant. The participant clicked on
the link. Then he/she would follow a simple on-screen instruction to download, install
the Zoom program and join the meeting. Each participant had access to SZ via
telephone in case of technical problems. Once the participant joined the online meeting,
training began. Each participant learned about the Zoom environment and different
features of the program. SZ checked their video and sound quality and practiced with
them the use of different features of Zoom including mute/unmute, video on/off, chat
box and leave the meeting. Each participant then was given the opportunity to practice
Zoom, and all her/his questions were answered. During this training, participants were
instructed on how to record their practices in the practice log.
3.4.1.3 Mindfulness Package
The mindfulness package was purchased by the research team for the study and
gifted to participants at no cost to them. It included a book, as mentioned above, called
“the Mindful Way Workbook” (Teasdale, Williams, and Segal 2013), a practice log and a
snack pack of raisins (which was needed for the first session for mindful eating
practice).
“The Mindful Way Workbook” contains information about emotional distress, MBCT
foundation and theories, other individuals’ experiences with MBCT, weekly
practices/explanations and homework. It also has blank areas to record weekly
practices and thoughts. The book also contains a CD audio guide to each week’s
mindfulness practice.
The practice log (Figure 4) was a simple form for self-recording daily practices. It
contained eight tables with space for recording number of minutes of daily MBCT
practice and a note pad for recording the reasons/obstacles for not practicing. These
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logs were anonymous and did not include any personal health information of the
participants. At the completion of the tele-MBCT training, participants submitted their
logs for analysis.
Week #
Estimate number of
minutes of mindfulness
practicing
Please write down the reasons for not practicing
mindfulness in this column
Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Figure 4 Practice log
3.4.1.4 Tele-MBCT instructor
The tele-MBCT instructor was a mental health clinician at the Reitman Centre
who had a University of Toronto specialist and applied mindfulness certificate and a
mindfulness training at Mount Sinai Psychotherapy Institute (MSPI). She was an expert
in helping CGs dealing with dementia and an experienced and skilled practitioner of
MBCT with extensive experience aside from MBCT in developing and delivering online
training and services to professionals and CGs.
Upon the completion of the study, the instructor was interviewed by the
researcher (SZ) regarding her feedback on the tele-MBCT intervention, the challenges
63
(general and technical) she experienced (as the instructor and also regarding the
participants) and the strengths and limitations of the intervention from her point of view.
3.4.1.5 Online interview with the instructor
Each participant had an individual online clinical intake interview with the
instructor during which each participant was asked about his/her personal health
history, coping strategies and emotional issues. After the interview, the instructor
oriented participants to the tele-MBCT training and what to expect in the groups.
3.4.1.6 Tele-MBCT training
Tele-MBCT was delivered in three 8-week modules. Each module consisted of 8
weekly, 2-hour group sessions with 4-6 participants, held via Zoom on Wednesdays
from 2:00 to 4:00 pm. The instructor (host) scheduled the sessions and emailed the
invitation link to the participants who joined each live session from home. For any
technical problems during the sessions, participants had telephone access to the
instructor.
During tele-MBCT training (Table 2), participants were trained in mindfulness
concepts and techniques including mindful eating, body scan, sitting meditation,
breathing awareness, mindful walking and mindful movements. Mindfulness practices
except for mindful walking and mindful movements were done in a sitting position in a
chair or standing. Participants were asked to do the mindful walking with safety
measures and in the room in which they were getting the training. The mindful
movements were gentle stretches performed in seated and standing positions and were
modified to each participant’s abilities. At the completion of each session, participants
were instructed to practice a specific mindfulness exercise during the week and record
them in their practice log. They could use the CD for guided meditation and their home
practice. The book also provided them with further readings. At the beginning of the
training, participants were asked to set aside 30-45 minutes per day for practices.
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However, they were free to practice based on their schedule. Participants were
permitted to miss up to 2 sessions for unanticipated problems. None of the sessions
was audio/video recorded. Missed sessions were made up by reading about the missed
session and doing the daily practice according to the book.
For this study, MBCT was modified in two ways for online delivery: omitting the
retreat day from the schedule and mindful movements in lying position. In face to face
MBCT training, the retreat day is held between sessions 6 and 7 and lasts 5-6 hours,
during which individuals spend most of the day together in silence, doing guided
practices of the previous sessions. Because of the long hours of the retreat day, it was
deemed impractical in an online intervention and omitted. Because of safety issues, it
was necessary that all the participants in the group could be seen (via their cameras) by
the instructor during the whole training by adjusting the individual’s device and finding
the best position. This issue was addressed in the Zoom training and the interview with
the instructor. Because doing the mindful movement in the lying position required
adjustment of the device during the session which was time consuming and challenging,
individuals were instructed to do mindful movements only in standing and sitting
positions. However, the instructor explained the mindful movements in lying position
and encouraged the participants to practice them at home.
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Table 2 The content of the tele-MBCT sessions
# of session In-class training Daily practice (at home)
Week 1
Beyond automatic
pilot
• Mindfully eating a raisin
• Body scan meditation
• Bringing awareness to
routine activities
• Body scan meditation • Mindfully eating a meal/snack • Bringing awareness to one’s
daily routine activity
Week 2
Another way of
knowing
• Body scan meditation • Mindfulness of breathing • Pleasant Experience
calendar
• Body scan meditation • Mindfulness of breathing • Bringing awareness to one
daily routine activity • Pleasant Experience
calendar
Week 3
Coming home to the
present
• Stretch and breath
meditation: mindful stretching
• Mindful movement meditation
• The 3-minute breathing space
• Unpleasant experience calendar
• Combined stretch and
breath meditation • Mindful movement
meditation • 3-minute breathing space • Unpleasant Experience
calendar
Week 4
Recognizing
aversion
• Sitting meditation • Mindful walking
• Sitting meditation • 3-minute breathing space-
regular • Additional breathing space
if needed • Mindful walking
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Table 2 continued The content of the tele-MBCT sessions
# of session In-class training Daily practice (at home)
Week 5 Allowing things to be
• Sitting meditation:
working with difficulties • 3-minute breathing
space
• Sitting meditation:
working with difficulties • 3-minute breathing
space
Week 6
Seeing thoughts as
thoughts
• Sitting meditation with a
focus on relating to thought as mental events
• 3-minute breathing space
• Early warning system
• Sitting meditation with a
focus on relating to thought as mental events
• 3-minute breathing space
• Setting up an early warning system
Week 7 Kindness in action
• Sustainable mindfulness
practice recognizing and explanation)
• The 3-minute breathing space
• Action plan
• Sustainable mindfulness
practice • 3-minute breathing
space • Prepare an action plan
Week 8
What know?
• Tips for sustaining a
daily formal mindfulness practice
• Tips for everyday mindfulness practice
• 3-minute breathing space
• Introducing resources and further reading
• Some daily formal
mindfulness practice • Some everyday informal
mindfulness practice • 3-minute breathing
space
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3.4.2 Control group
Participants randomized to the control usual care group continued their usual
caregiving and support activities. At 12 weeks upon the completion of the baseline
surveys, they were informed about resources available through the ENRICHES project
and other resources available at Reitman center and were offered an opportunity to
participate in those programs. They also received the “Mindful Way Workbook” and
were offered the opportunity to have MBCT training at the Reitman Centre.
Measures
3.5.1 Feasibility assessment
Feasibility assessments included recruitment, retention and compliance rates.
Participants’ compliance rate was evaluated based on attendance and practice rate,
ability to complete the practice log and satisfaction questionnaire. The satisfaction
questionnaire was also designed to evaluate tele-MBCT group participants’ satisfaction
with the intervention.
3.5.1.1 Satisfaction Questionnaire
The satisfaction questionnaire (designed for this study) had two parts: part 1
included 20 questions about overall satisfaction with the training, clinical setting, tele
delivery format, size of the group, length of the sessions and the whole program, the
book and their overall evaluation of the tele-MBCT effect on their depression, anxiety
and coping skills. Responses were recorded on a 5-point scale including “strongly
disagree”, “disagree”, “neutral”, “agree” and “strongly agree”; part 2 contained six open
questions about the acceptability of the program, challenges with the program and the
online technology and their experience with an online program (Appendix 1).
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3.5.2 Psychological outcome measures
3.5.2.1 Stress
Participants’ stress level was measured using the 10-item version of the
Perceived Stress Scale (PSS) (S. Cohen, Kamarck, and Mermelstein 1983). PSS is a
self-report measure of the degree to which “situations in one’s life are appraised as
stressful, unpredictable and overloading during the past month” (S. Cohen, Kamarck,
and Mermelstein 1983). PSS is comprised of 10 questions, and the responses are
recorded on a 5-point Likert scale: 0 (never), 1 (almost never), 2 (sometimes), 3 (fairly
often) and 4 (very often). Scores range from 0 to 40, with higher scores indicating
greater perceived stress. PSS is a short, easy to use questionnaire which has adequate
internal reliability (Cohen and Williamson 1988) and acceptable psychometric properties
(E.-H. Lee 2012).
Participants’ PSS score was computed at each time point of assessment (pre,
post and follow-up). Stress change was calculated by subtracting pre-intervention PSS
score from post-intervention PSS score. For other outcome measures as well, raw
score at each time point of assessment and outcome change were calculated.
3.5.2.2 Depression
Symptoms were measured using the Center for Epidemiologic Studies
Depression Scale (CES-D) (Radloff 1977). CES-D is a 20-item self-report instrument
that was designed to identify depression in the general population. It contains 20
questions of how often the individual “felt or thought in a certain way” in the past week.
Each question has a 0 to 3 response scale: “0 (rarely or none of the time [less than 1
day]), 1 (some or a little of the time [1–2 days]), 2 (Occasionally or a moderate amount
of the time [3–4 days]) and 3 (most or all of the time [5–7 days])”. The total score which
is computed by summing item responses ranges from 0 to 60. Scores 16 and above are
indicative of depression. CES-D has been extensively used in large studies, and it can
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be used across different age and socioeconomic groups (McDowell 2006). This scale
has been widely studied, has shown internal consistency, test–retest reliability and
validity for adults (Lewinsohn et al. 1997; Shinar et al. 1986). Studies have shown good
sensitivity and specificity of CES-D (Weissman et al. 1977). It is sensitive to change
before and after treatment, as well as before and after a stressful life event (Smarr and
Keefer 2011).
3.5.2.3 Anxiety
Current anxiety level was measured by the State Anxiety Subscale of the
Spielberger State-Trait Anxiety Inventory (STAI-S) (Spielberger 2010). STAI-S is a 20-
item self-report instrument in which the response to each statement describes the
individual’s feelings at that very moment. The responses are made on a 4-point Likert
format varying from 1 (not at All), 2 (a little), 3 (somewhat) and 4 (very much so). Scores
range from 20 to 80, with higher scores indicating greater levels of anxiety (Grös et al.
2007). STAI is a widely used measure which has shown internal consistency and
validity and ability to detect change (McDowell 2006; Julian 2011).
3.5.2.4 Coping
Participants’ responses to stressful situations were measured using the Coping
Inventory for Stressful Situations- short form CISS-SF (Endler, Parker, and Butcher
2003). CISS-SF is a 21-item self-report measure of Emotion-, Task-, and Avoidance-
oriented coping with seven items per subscale. Respondents rate the extent to which
they have used coping skills when faced with a stressful situation. Responses are made
on a 5-point Likert-type scale ranging from 1 (not at all) to 5 (very much). Different
subscales of CISS-SF have shown internal consistency and validity (Endler, Parker, and
Butcher 2003; Endler and Parker 1994; Endler et al. 2000).
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3.5.2.5 Self-Compassion
The Self-compassion scale (SCS) measures how participants see their reaction
toward themselves in difficult situations (K. Neff 2003). SCS is a 26-item self-report
questionnaire which includes six subscales: Self-Kindness, Self-Judgment, Common
Humanity, Isolation, Mindfulness and Over-Identification subscales. Responses are
made on a 5-point Likert scale ranging from 1 (almost never) to 5 (almost always). The
total SCC score is the mean of positive subscale and negative subscale items. Positive
subscale (common humanity, self-kindness and mindfulness) scores are computed by
calculating the mean of subscale item responses. Negative subscale items (self-
judgment, isolation, and over-identification) are scored in reverse (i.e. 1 = 5, 2 = 4, 3 =
3. 4 = 2, 5 = 1). Higher total scores indicate greater self-compassion and kindness
toward oneself. SCS has shown internal consistency, good reliability and validity (K.
Neff 2003; K. D. Neff, Pisitsungkagarn, and Hsieh 2008) and has been used to evaluate
change following mindfulness practices including MBCT for recurrent depression
(Kuyken et al. 2010).
3.5.3 Other measures
3.5.3.1 Screening questionnaire
The screening questionnaire was designed to identify eligible participants for the
study. The items on this questionnaire were based on the inclusion/exclusion criteria. It
gathered information on demographics, CR type of dementia, CG relationship, living
status of the CG and CR, length of time as a CG, level of familiarity with computer,
physical and mental medical history, drug history, habitual history and involvement in
any support group or mind-body programs (Appendix 2).
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3.5.3.2 Single-item measure of self-perceived stress
A single-item measure of self-perceived stress was used in a phone interview to
identify the eligible participants for this study. The question was “Stress means a
situation when a person feels tense, restless, nervous, or anxious, or is unable to sleep
at night because his or her mind is troubled all the time. Do you feel that kind of stress
these days?” The response was scored on a 5-point Likert scale varying from 1 “not at
all” to 5 “very much” (Elo, Leppänen, and Jahkola 2003). Participants with scores 3 and
up were considered as eligible for this study. In the investigation of Elo et al. (2003) on
the measure, they concluded that the stress-symptoms item showed satisfactory
content, criterion, and construct validity for group level analysis.
3.5.3.3 Neuropsychiatric symptoms
Neuropsychiatric symptoms of the CR were assessed using the Neuropsychiatric
Inventory- Questionnaire (NPI-Q) (Cummings et al. 1994). NPI-Q is a self-administered
scale completed by the CGs about the person for whom they care. The NPI
questionnaire includes 12 symptom domains: delusion, hallucination, depression,
anxiety, agitation/ aggression, euphoria/elation, disinhibition, irritability/lability, apathy,
and aberrant motor activity, nighttime behavior disturbances and changes in
appetite/eating behaviors. Each of the 12 NPI-Q items contains a survey question that
reflects cardinal symptoms of that domain. Initial responses to each question are "Yes"
(present) or "No" (absent). For each present symptom, the respondent will identify:
1. The severity of the CR symptoms present within the last month on a 3-point
scale: “1 = mild (noticeable, but not a significant change), 2 = moderate
(significant, but not a dramatic change), 3 = severe (very marked or
prominent, a dramatic change)”
2. The associated impact of the symptom manifestations on them (i.e. CG
Distress) using a 5-point scale: “0 = not distressing at all, 1 = minimal (slightly
distressing, not a problem to cope with), 2 = mild (not very distressing,
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generally easy to cope with), 3 = moderate (fairly distressing, not always easy
to cope with), 4 = severe (very distressing, difficult to cope with), 5 = extreme
or very severe (extremely distressing, unable to cope with)”.
Studies of NPI-Q has shown that this measure has good test-retest reliability,
validity and internal consistency (Cummings et al. 1994; Trzepacz et al. 2013). The
measure also has acceptable psychometric properties and is a good brief measure of
CR neuropsychiatric symptoms and associated CG distress (Kaufer et al. 2000).
Statistical analysis
SPSS software (SPSS Inc. v. 24) was used to conduct the statistical analysis.
Measures of central tendency and dispersion were calculated for pre-randomization
demographic characteristics. The tele-MBCT and comparison group participants were
compared on these measures using student’s t-tests for normally distributed variables
and Mann-Whitney test for nonparametric variables or chi-square and F test statistics as
appropriate. To test the hypothesis that tele-MBCT was feasible, retention rate (number
of the participants who completed the study), attrition rate (number of the participants
who dropped out of the study) was calculated. For the tele-MBCT participants,
attendance and compliance rate, ability to complete the practice log and satisfaction
questionnaire were calculated. Measures of central tendency and dispersion were also
calculated for attendance rate in the program and daily practices; then a Spearman
partial correlation was used to determine whether there was an association between
attendance, daily practices and the psychological outcomes.
To test whether participants in the tele-MBCT and the control groups differed in
the psychological outcome measures at the pre-, post-intervention and follow-up
assessments, Student’s t-tests and Mann-Whitney test as appropriate were used. A
paired t-test statistic was used to compare pre- to post-intervention assessments for
psychological outcome measures in each intervention and control group. A post hoc
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Pearson correlational analysis was conducted to analyze the association between
psychological outcome measures at each time point of assessments.
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Chapter 4
Results
Participants
At the end of recruitment phase, a total of 56 telephone calls were received about
the study (Figure 5). Of these, 46 were interested and completed a telephone
screening. Out of screened CGs for inclusion and exclusion criteria, 38 individuals were
eligible. Nine individuals did not meet eligibility criteria: five were not caregivers
anymore (CR passed away or institutionalized), two had a stress level less than three
on the stress scale, one cared for a senior with MCI and one did not have computer
skills. Out of 38 eligible CGs, 12 declined to enter the study: seven had time conflicts
with their job or other activities, two preferred a face-to-face course, two did not want to
risk being in the control group and one lacked the time. The final study sample
consisted of 26 participants. 14 were randomized to the intervention group and 12 to the
control group.
Participants’ characteristics are summarized in Table 3. Participants were
predominantly female with 88% in total, 92% of the intervention group and 83% of the
control group. Most of the participants (70%) were caring for a parent. Most of the
participants were highly educated (69% completed graduate schools). Majority of the
participants were retired (61%). Participants cared for their CR on average of 5.12 ±
2.88 years. In total, 46% of the CRs had AD, 27% had other types of dementia (VD,
LBD, and PSP) and CG did not know the specific diagnosis of dementia in 27% of
cases. 46.15% of the participants lived with the CR, and 53.85% did not.
No observed demographic differences (age, CG-CR relationship, education,
marital status, employment status, years of caregiving, type of CR dementia and CG-
CR living status) was detected between the caregivers randomly assigned to tele-MBCT
relative to control group (Table 3Table 3).
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Table 3 Participants characteristics
Total Intervention Control p Value
N 26 14 12
Age M (SD) 60 ± 13 58 ± 11 63 ± 15 0.37
Female N (%) 23 (88) 13 (92) 10 (83)
CG-CR Relationship N (%) 0.26
Spouse/Partner 8 (30) 3 (21) 5 (42)
Adult child 18 (70) 11 (79) 7 (58)
Marital Status N (%) 0.63
Married 15 (58) 7 (50) 8 (66)
Single 11 (42) 7 (50) 4 (34)
Education N (%) 0.36
High school 3 (11.5) 1 (7.1) 2 (16.7)
College 5 (19.2) 4 (28.6) 1 (8.3)
Graduate school 18 (69.3) 9 (64.3) 9 (75)
Employment N (%) 0.39
Employed 9 (34.6) 6 (42.8) 3 (25)
Unable to work 1 (3.8) - 1 (8.3)
Retired/ homemaker 16 (61.5) 8 (57.2) 8 (66.7)
M = mean, SD = standard deviation, N =number
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Feasibility assessment
4.2.1 Recruitment and retention rate
Overall out of 47 screened CGs, 38 (80%) individuals met eligibility. Nine CGs
were not eligible, five of those were not caregivers anymore (care-recipient passed
away or institutionalized), two had a stress level less than three on the stress scale, one
cared for a senior with MCI and one did not have computer skills. Out of 38 eligible
CGs, 12 (38%) declined to enter the study: seven had time conflicts with their job or
other activities, two preferred a face-to-face course, two did not want the risk of being in
the control group, and one lacked the time.
Table 3 continued Participants characteristics
Total Intervention Control p Value
Years Caregiving M (SD) 5.12 (2.88) 5.29 (2.26) 4.92 (3.57) 0.75
Dementia type N (%) 0.52
AD 12 (46) 6 (42.8) 6 (50)
Other (VD, LBD, PSP) 7 (27) 5 (35.7) 2 (16.7)
Did not know 7 (27) 3 (21.5) 4 (33.3)
Living with the CR N (%) 0.24
Yes 12 (46.15) 5 (35.7) 7 (58.3)
No 14 (53.85) 9 (64.3) 5 (41.7)
M = mean, SD = standard deviation, N = number
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A total of 26 participants were randomized to the study. Out of those, 24
completed the study indicating an overall 92% retention rate. Two participants dropped
out indicating an 8% attrition rate. Both of dropouts were in the intervention group and
left the study at the beginning of their training. One because of time constraints related
to academic activities and the other one preferred to spend his time taking care of his
spouse. 24 (92%) participants completed the intervention/their turn in the study and
post-intervention and 24 (92%) completed the follow-up assessment (Figure 5).
56 telephone calls regarding interest/questions
47 (83%) were interested and completed the telephone screening
38 (80%) were eligible to participate in the study
26 (68%) agreed to participate in the study
24 (92%) completed the study and 8-week post-intervention assessment
24 (92%) completed 4-week follow-up assessment
9 Did not meet eligibility criteria
12 Declined to participate
2 Dropped out
26 Analyzed
Figure 5 Flow of recruitment and retention
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4.2.2 Participants’ attendance
Tele-MBCT was an 8- week program, 2 hours per week on Wednesdays
afternoon. Out of 14 participants randomized to the intervention group, 12 completed
their training and two dropped out at the beginning of their training. Overall, 10 of the
participants (84%) attended at least seven sessions (Figure 6). Most common reason
for missing a session was pre-planned out of town family event. Other reasons include
caregiving emergency, work conflict, unexpected health issues of the participant, pre-
planned CR appointment and technical problems (one of the participant’s modem
crashed before a session, and she missed that session).
Attendance had a significant positive correlation with daily practice (r = 0.76, p =
0.01). Attendance also showed a significant positive correlation with self-compassion
change (r = 0.61, p = 0.03). Although attendance did not have a statistically significant
Figure 6 Attendance, 84% of the participants in the intervention group attended at
least 7 sessions
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correlation with stress change, but there was a trend toward significance (r = -0.57, p =
0.05). Attendance did not show a significant correlation with the change in other
outcome measures including depression (r = -0.45, p = 0.13), anxiety (r = -0.33, p =
0.29) and emotional-oriented coping (r = -0.37, p = 0.23) (Figures in Appendix 3).
4.2.3 Daily Practice
Out of 12 participants in the intervention group who completed their training, 10
(84%) returned their practice logs.
The least time of daily practice was 3.02 minutes and the maximum time was
154.26 minutes per day per tele-MBCT course. The range of daily practice for nine
participants was between 3.02 and 45.71 minutes. One participant (subject 19,Figure 7)
practiced more than one hour per day (154.26 minutes). Intervention participants
practiced 36.65 ± 43.74 minutes per day on average (Figure 7). After removing the
outlier (subject 19), the average of daily practice was 23.58 ± 45.71 minutes. The most
common reason for not practicing was lack of time due to CR medical emergency, CR
health condition deterioration, being out of town, having visitors, babysitting, other family
members’ health emergency and time-consuming chores due to CR health issue. Other
reasons included CG health issue (cancer diagnosis in the midst of the program in one
of the participants), not liking the practice (e.g. hard to do, not relaxing, evoking horrible
emotions, feeling tired, not feeling good), not having concentration and becoming
distracted. One of the participant’s CD of the book did not work at the beginning of the
training, which was fixed for the rest of the training.
Daily practice had a significant positive correlation with self-compassion change
(r = 0.65, p= 0.04) (Figure 8). However, after removing the outlier, the correlation
between daily practice and self-compassion change did not remain significant (r = 0.59,
p= 0.09). Daily practice did not show a significant correlation with the change in other
outcome measures including perceived stress, depression, anxiety, and emotional-
oriented coping (Figures in Appendix 4). After removing the outlier, these correlations
remained statistically not significant.
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Figure 8 A significant positive correlation between daily practice and self-
compassion change (r = 0.65, p = 0.04)
Figure 7 Tele-MBCT participants practiced mindfulness techniques 36.65 ± 43.74 minutes (on average) daily during their training
Subject 19
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4.2.4 Satisfaction
Satisfaction questionnaire was designed to measure participants’ satisfaction
with the intervention, acceptability and challenges of the intervention. It was completed
by the intervention group at post-intervention assessment. Satisfaction questionnaire
had two parts; part 1 consisted of 20 close questions with options to choose between
(strongly agree, agree, neutral, disagree and strongly disagree). In reporting the results
of part 1, options were categorized into three groups: strongly agree and agree as one
group, neutral as one group and disagree and strongly disagree as the other group. Part
2 contained six open questions. Out of 12 participants in the intervention group, 11
(92%) completed the satisfaction questionnaires, which were analyzed.
4.2.4.1 Satisfaction Questionnaire: part 1
All of the participants were satisfied with the intervention and indicated that it was
helpful to them and they would recommend the intervention to others. Most of the
participants agreed that the intervention was able to address their needs (90.9%),
improve their coping skills (90.9%) and improve their ability to manage difficult emotions
(81.81%). Most of the participants were satisfied with the size of the group (90.9%),
length of the intervention (72.72%) and length of each session (81.81%). Most of the
participants found it helpful to be with other caregivers in a group (90.9%) (Table 4).
Most of the participants were satisfied with the online setting of the intervention
(81.8%) and would recommend online programs to others (90.9%). Most of them
agreed that joining the sessions via Zoom was easy (100%) and the quality of Zoom
was adequate (90.9%). Most of the participants were satisfied with the “Mindful Way
Workbook” and agreed that the book was helpful (90.9%). Most of the participants could
regularly read and use the book (81.8%) (Table 5).
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Table 4 Satisfaction questionnaire, part 1
Agree
N (%)
Neutral
N (%)
Disagree
N (%)
The program was helpful 11(100%)
The program addressed their needs 10 (90.9%) 1(9.1%)
Satisfied with the program 11 (100%)
Would recommend Tele-MBCT program to others 11 (100%)
Improved their coping skills 10 (90.9%) 1(9.1%)
Improved their ability to manage difficult emotions
9 (81.81%) 2(18.2%)
Size of the group was appropriate (4-6 per group) 10 (90.9%) 1(9.1%)
Length of the program was adequate (8 weeks) 8 (72.72%) 3 (27.27%)
(too short)
Length of each session was adequate (2h) 9 (81.81%) 1 (9.90%) 1 (9.09)
(too long)
Being in a group with other caregivers was helpful
10 (90.9%) 1 (9.1%)
Will continue to practice mindfulness 9 (81.81%) 1 (9.90%) 1 (9.90%)
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Table 5 Satisfaction questionnaire, part 1: online technology and the book
Agree
N (%)
Neutral
N (%)
Disagree
N (%)
Satisfied with the online technology 9 (81.81%) 2 (18.19%)
Joining the sessions was easy 11 (100%)
The quality of Zoom program was adequate 10 (90.9%) 1 (9.90%)
Would recommend online programs to others 10 (90.9%) 1 (9.90%)
Would like to join other online programs 6 (54.5%) 4 (36.4%) 1 (9.90%)
The “Mindful Way Workbook” was helpful 10 (90.9%) 1 (9.90%)
Could regularly read and use the “Mindful Way
Workbook”
9 (81.8%) 2 (18.2%)
4.2.4.2 Satisfaction questionnaire: part 2
Part 2 of Satisfaction questionnaire had six open questions.
How acceptable was the intervention to participants?
Nine participants found the intervention acceptable:
“It worked well. My inexperience sometimes created problems [on] my
end, but overall it was satisfactory.”
“Very [acceptable]. Undecided at first but very informative.”
“It was a great way to learn how to deal with some of my stress.”
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“Fine because exceeded my expectations; got more out of it than
anticipated ([I] thought it would help but it was more helpful than
thought it would be)”
“Very acceptable. Wonderful tool, skills are very useful and practical.
[They] can be done throughout your day.”
However, the other two participants had different ideas:
“It caused anxiety because I was at home. When [my CR] knows I am
here, he calls me, wants to see me, see what I’m doing. Too often,
[my CR] was a distraction that interfered with what I was doing. It
would have been better for me if I had not been at home.”
“Different than meeting in person, somehow less emotionally charged,
as you have the option of turning off sound & video. Allowing a feeling
of some self-control. Not sure if this means meeting online makes you
feel a bit removed.”
How were participants’ experiences with the intervention?
Participants reported positive experiences of training MBCT during the study, with ten
of them stating that they had good experiences:
“Very helpful, informative, supportive. I enjoyed the on-line learning
sessions, they were calming.”
“Educational, enjoyable to hear from other caregivers because made
me less isolated; positive because made me make time for myself
and give me new skills to use to better cope. Group size [was] fine;
[the] instructor was good.”
“The women are all lovely, each unique, each valuable in terms of
extending my understanding of coping. It was a positive experience.”
“Overall, good. I am not very experienced with video conferencing,
but am very compatible with computer. It was very pleasant,
informative, [and] good to connect with others, but somehow a bit
less intimate.”
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For one of the participants the experience was interesting and different, however she
stated that “don’t get flow of energy from others, when on internet.”
Will intervention participants continue to practice what they have learned in the Tele-MBCT training?
Ten of the participants in the intervention group reported that they planned to
continue what they have learned in the tele-MBCT training using the book, the audio CD
or other resources they were introduced to at the end of the study:
“I am certainly trying to. I feel it’s important to do some of the practices on a daily basis.”
“In fact I have started to meditate while doing dishes and I found it very relaxing, and calming. I practice this meditation all the time, and when I go to bed, I always do the 10 min. meditation, to calm myself and by focusing on my breath to calm my heart and clear my mind of thoughts. Found that my breath is my best friend, available all the time for me, anywhere and anytime!”
“Definitely, and investigate other readings and apps.”
“I’ve already begun rereading the book because my life is a little less stressful than it was during the study now that my [CR] health issues are being adequately addressed.”
“[I] may not be as diligent as I was during the study, but I will use what I have learnt.”
One of the participants tried to continue the practices, however she could not maintain
it:
“My life is too intense, too busy to add something more to an already heavy load.”
How were participants’ experiences with attending the program at home?
Six participants reported positive experiences with the home-based nature
of the intervention, with two participants saying that it was helpful to do the
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training from their familiar environment. Two other participants highlighted that
it was more comfortable to be at home while doing the training:
“I think it was easier to “settle in” as being in your own environment allows for a more comfortable experience.” “It worked out very well. I never felt I was at home alone, I felt part of the group.”
One of the participants who was employed reported that even though she
needed to return home to get the training which was time-consuming, she
enjoyed the comfort of her own home.
Two participants reported a mixed experience:
“Traveling takes you out of your comfort zone. Time and cost saving by being at home. [It] feels more like a course away from home. Concentration is better away from home.”
“Good in a way because took less time but difficult because was easily interrupted by my [CR] or PSW or family responsibility [i.e.] taking call from CCAC or GP.”
One participant preferred an in-person format:
“I could have focused better in person with the group members. Travelling gives me a break even though it eats up PSW hours.”
What challenges arose for intervention participants?
Responses to this questions were personal and participants reported issues
with their life situations. Therefore, only their challenges are reported and non-
personal responses are reported in this section.
Four participants did not report any issues with MBCT training and
practices. The most common challenge participants faced was lack of time to
do the practices: 5 participants reported difficulties with finding time for the daily
practices due to their responsibilities and/or health issues of themselves or their
CR.
Two participants found some of the practices challenging, one of them said
“[it] was hard to direct the breath towards certain places in the body”, and the
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other one reported “[one of the challenges was] to try and sit still while doing
the meditation.”
Technical challenges:
Seven participants did not face any technical challenges. They received the
training without any technical problems and were satisfied with the online
setting of the intervention.
In total, three participants loaned a tablet, one of them did not report any
technical problem and was completely satisfied with the tablet. .Another
participant had a problem with her laptop for the first session. However, the
other two participants experienced technical issues including poor sound
quality, cracking and static noises, freezing the video and disconnection
halfway through the session which made them log out and log back in.
One of the participants missed a session because her modem crashed
before the session.
Another participant who used her iPad reported that the format of Zoom on
iPad was different for her which made different problems including joining the
sessions and different screen format, but they were overcome.
4.2.5 Instructor’s feedback
Overall, the instructor was satisfied with the intervention and its online delivery.
She reported the training was rich in terms of participants’ commitment, emotional
connection in the group, bonding between the group participants and between the
participants and the instructor. She mentioned several strengths and challenges for the
intervention from her perspective.
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4.2.5.1 Strengths
4.2.5.1.1 Group homogeneity
Since all the participants were CGs, the intervention was tailored to their needs,
and she was able to focus the practices on caregiving issues including CG identity and
ambiguous loss. She said that this strength shifted the MBCT training from
psychoeducation and skill training towards psychotherapy which in her opinion, could
change the depth of the training for the participants in a positive way.
4.2.5.1.2 Workbook
Since the training was from a distance, the book as a tangible object contributed
to the connection between group participants and the instructor. It also provided the
opportunity for the participant to reflect on and to record their thoughts and practices in
the book which helped the structure of the training.
4.2.5.1.3 Individual online intake
Individual online intake provided information and a Zoom practicing opportunity.
Being able to practice before the actual training contributed to relieve participants’
stress and anxiety. It also provided the instructor with an opportunity to troubleshoot any
technical issues in advance and prepare participants for approaching unexpected
technical problems during the training.
4.2.5.1.4 Online technology
Having the training via internet contributed to high accessibility and availability.
Participants could receive the training from their home without the need to travel
downtown, being in the traffic or worry about a parking space. All these factors
improved the probability of attending the sessions, ie compliance.
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4.2.5.2 Challenges
4.2.5.2.1 Online technology
She mentioned that some of the participants were anxious about the online
format of the training and thought it could be hard. However, the online zoom training
and individual intake helped them to become more comfortable with the online setting,
and as the training progressed, the anxiety and stress faded away.
As the instructor, she needed to develop new skills and adaptability for the online
setting of the training. For instance, she mentioned that she was aware of the
participants through the camera during the sessions. Also, she needed to manage the
unexpected technical issues from a distance. Adapting to the technology was different
from an in-person group. However, it did not limit the training.
For a high-quality Zoom group training, two factors are critical: a high-speed Wi-
Fi and a powerful new device (e.g. tablet or computer). If the Wi-Fi or the device is not
powerful enough to process the amount of audio-visual data of a group session,
different quality issues will develop (i.e. poor sound quality, cracking and static noises,
freezing the video). As mentioned earlier, these quality disturbances happened with two
of the participants who loaned the tablets. It is not clear if the problem was with the
tablet or the participant’s Wi-Fi bandwidth. This quality problem was solved by logging
out during the break and logging back in for the second half of the session.
4.2.5.2.2 Time
She mentioned that the length of the sessions (2 hours) was challenging for her.
2 hours was tight and did not leave adequate space for unexpected technical issues
and troubleshooting.
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Psychological outcomes
4.3.1 CR symptoms and CG distress
An independent-samples t-test was conducted to compare severity of CR
symptoms and CG distress between the intervention and control participants. Two
groups were not different in their reports of the severity of CR symptoms (p = 0.53) and
CG distress (p = 0.74) (Table 6).
There was a significant positive correlation between severity of CR symptoms
and CG distress (r = 0.81, p < 0.0001) (Figure 9).
Table 6 Comparison of two groups on the severity of CR symptoms and CG distress
Severity of CR symptoms (M ±SD) CG distress (M ±SD)
Intervention group 14.93 ± 6.92 22.14 ± 4.96
Control group 13.17 ± 7.30 20.83 ± 7.95
p Value 0.53 0.74
M = mean, SD = standard deviation
Figure 9 Severity of CR symptoms had a significant positive correlation with CG distress (r = 0.81, p < 0.0001) Green= intervention group, Blue= control group
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4.3.2 Stress
An independent-samples t-test was conducted to compare stress levels in the
intervention and control groups at pre-intervention, post-intervention and follow-up
assessments. Two groups were not different on their reports of perceived stress at pre-
intervention (p= 0.30), post-intervention (p= 0.60) and follow-up (p= 0.61) assessments
(Table 7Table 7).
A paired-samples t-test was conducted to compare stress level at pre-
intervention and post-intervention assessments in each group. In the intervention group,
there was no significant difference in the PSS scores in pre- and post-intervention
assessment (t(11)= 1.86, p= 0.09). In the control group, there was a not significant
difference in the PSS in pre- and post-intervention assessments (t(11)= -0.50, p= 0.62).
Post hoc correlational analysis for both groups combined demonstrated that PSS
score had significant correlations with other outcome measures. Self-reported levels of
perceived stress had a significant positive correlation with depressive symptoms at pre-
intervention, r = 0.63, p < 0.001 (Figure 10), post-intervention, r = 0.77, p < 0.0001
(Figure 11), and follow-up r = 0.74, p < 0.0001 (Figure 12), indicating a robust
association between perceived stress level and depressive symptoms. PSS also
showed a significant correlation with anxiety level, with positive correlations at pre-
intervention, r = 0.56, p = 0.003 (Figure 13), post-intervention, r = 0.61, p = 0.001
(Figure 14) and follow-up, r = 0.79, p < 0.0001 (Figure 15). In addition, PSS score
demonstrated a significant negative correlation with self-compassion level at pre-
intervention, r = -0.61, p = 0.001 (Figure 16), post-intervention, r = -0.65, p = 0.001
(Figure 17) and follow-up, r = -0.59, p = 0.002 (Figure 18).The PSS also correlated with
some subscale of the SCS at the three time points of assessment (Table 8).
PSS showed a significant positive correlation with emotional-oriented subscale of
coping, at pre-intervention, r = 0.53, p = 0.005 (Figure 19), post-intervention, r = 0.45, p
= 0.02 (Figure 20) and follow-up, r = 0.63, p = 0.001 (Figure 21). PSS showed a
significant negative correlation with task-oriented subscale of coping, at pre-
intervention, r = -0.45, p = 0.02, however the correlation did not remain significant at
post-intervention and follow-up. PSS was not correlated with avoidance-oriented
subscales of coping at three time points of assessments.
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Table 7 Perceived stress, comparison of two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 25.07 ± 6.60 21.08 ± 11.40 21.08 ± 7.90 1.86 0.09
Control 22.50 ± 6.08 23.17 ± 7.60 22.75 ± 8.02 -0.50 0.62
M = mean, SD= standard deviation
Table 8 Post hoc correlational analysis of both groups combined, Perceived Stress
Scale (PSS) and the Self-Compassion Scale (SCS) subscales
SCS subscale PSS
(pre-intervention)
PSS
(post-intervention)
PSS
(follow-up)
Self-Kindness r = -0.41 p = 0.04** r = -0.41 p = 0.04** r = -0.51 p = 0.01**
Common Humanity r = -0.69 p < 0.0001** r = -0.51 p = 0.01** r = -0.37 p = 0.06
Mindfulness r = -0.53 p = 0.007** r = -0.34 p = 0.10 r = -0.35 p = 0.09
Self-Judgment r = -0.36 p = 0.07 r = -0.48 p = 0.01** r = -0.61 p = 0.001**
Isolation r = -0.29 p = 0.19 r = -0.58 p = 0.002** r = -0.65 p < 0.0001**
Over-identification r = -0.55 p = 0.005** r = -0.45 p = 0.02** r = -0.61 p = 0.002**
r = Pearson Correlation, ** = statistically significant
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Figure 10 A significant positive correlation between stress and depression scores
at pre-intervention assessment (r = 0.63, p < 0.001) Green= intervention group, Blue= control
group
Figure 11 A significant positive correlation between stress and depression
scores at post-intervention assessment (r = 0.77, p < 0.0001) Green= intervention group,
Blue= control group
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Figure 12 A significant positive correlation between stress and depression scores
at follow-up assessment (r = 0.74, p < 0.0001) Green= intervention group, Blue= control group
Figure 13 A significant positive correlation between stress and anxiety scores at
pre-intervention assessment (r = 0.56, p = 0.003) Green = intervention group, Blue = control
group
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Figure 14 A significant positive correlation between stress and anxiety scores at
post-intervention assessment (r = 0.61, p = 0.001) Green = intervention group, Blue = control
group
Figure 15 A significant positive correlation between stress and anxiety scores at
follow-up assessment (r = 0.79, p < 0.0001) Green= intervention group, Blue= control group
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Figure 16 A significant negative correlation between stress and self-compassion
scores at pre-intervention assessment (r = -0.61, p = 0.001) Green= intervention group, Blue=
control group
Figure 17 A significant negative correlation between stress and self-compassion
scores at post-intervention assessment (r = -0.65, p = 0.001) Green= intervention group,
Blue= control group
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Figure 19 A significant positive correlation between stress and emotional-
oriented coping scores at pre- intervention assessment (r = 0.58, p = 0.005) Green=
intervention group, Blue= control group
Figure 18 A significant negative correlation between stress and self-compassion
scores at follow-up assessment (r = -0.59, p = 0.002) Green= intervention group, Blue= control
group
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Figure 20 A significant positive correlation between stress and emotional-
oriented coping scores at post- intervention assessment (r = 0.45, p = 0.02) Green=
intervention group, Blue= control group
Figure 21 A significant positive correlation between stress and emotional-
oriented coping scores at follow-up assessment (r = 0.63, p = 0.001) Green=
intervention group, Blue= control group
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4.3.3 Depression
An independent-samples t-test was conducted to compare depression levels in
the intervention and control groups at pre-intervention, post-intervention and follow-up
assessments. Two groups were not different on their reports of depression at pre-
intervention (p= 0.08), post-intervention (p= 0.67) and follow-up (p= 0.55) assessments
(Table 9).
A paired-samples t-test was conducted to compare depression level at pre-
intervention and post-intervention assessments in each group. In the intervention group,
there was no significant difference in the CES-D scores in pre- and post-intervention
assessment (t(11)= 1.52, p= 0.15). In the control group, there was no significant
difference in the CES-D scores in pre- and post-intervention assessments (t(11)= -1.33,
p= 0.20) (Table 9).
Table 9 Depression, comparison of two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 24.29 ± 12.88 21.25 ± 16.86 18.67±13.48 1.52 0.15
Control 16.08 ± 10.21 18.92 ± 8.41 22.08 ±14.49 -1.33 0.20
M = mean, SD= standard deviation
4.3.4 Anxiety
An independent-samples t-test was conducted to compare anxiety levels in the
intervention and control groups at pre-intervention, post-intervention and follow-up
assessments. Two groups were not different on their reports of anxiety at pre-
intervention (p= 0.25), post-intervention (p= 0.99) and follow-up (p= 0.82) assessments
(Table 10).
100
A paired-samples t-test was conducted to compare anxiety level at pre-
intervention and post-intervention assessments in each group. In the intervention group,
there was no significant difference in the STAI-S scores in pre- and post-intervention
assessment (t(11)= 0.33, p= 0.74). In the control group, there was no significant
difference in the STAI-S scores in pre- and post-intervention assessments (t(11)= -1.88,
p= 0.08) (Table 10).
Table 10 Anxiety, comparison between two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 43.86 ± 15.24 43.83 ± 16.65 44.67 ±14.94 0.33 0.74
Control 37.17 ± 13.99 43.75 ± 15.38 43.17 ±17.31 -1.88 0.08
M = mean, SD= standard deviation
4.3.5 Self-Compassion
An independent-samples t-test was conducted to compare self-compassion
levels in the intervention and control groups at pre-intervention, post-intervention and
follow-up assessments. Two groups were not different on their reports of self-
compassion at pre-intervention (p= 0.05), post-intervention (p= 0.76) and follow-up (p=
0.57) assessments (Table 11).
A paired-samples t-test was conducted to compare self-compassion level at pre-
intervention and post-intervention assessments in each group. In the intervention group,
there was a significant difference in the SCS scores in pre- and post-intervention
assessment (t(11)= -2.49, p= 0.03). In the control group, there was no significant
difference in the SCS scores in pre- and post-intervention assessments (t(11)= -1.03,
p= 0.32) (Table 11).
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Table 11 Self-compassion, comparison between two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 2.57 ± 0.62 2.85 ± 0.73 3.17 ± 0.96 -2.49 0.03
Control 3.10 ± 0.64 2.94 ± 0.73 2.97 ± 0.76 1.03 0.32
M = mean, SD= standard deviation
4.3.6 Coping
Participants’ coping skills were assessed using Coping Inventory in Stressful
Situation-short form (CISS-SF). CISS-SF has three subscales: emotional-, task- and
avoidance-oriented coping.
Emotional-oriented coping (CISS-E): An independent-samples t-test was
conducted to compare emotional-oriented coping levels in the intervention and control
groups at pre-intervention, post-intervention and follow-up assessments. Two groups
were different on their reports of emotional-oriented coping at pre-intervention (p= 0.01),
with higher levels in the intervention group. Two groups were not different at post-
intervention (p= 0.72) and follow-up (p= 0.88) assessments (Table 12).
A paired-samples t-test was conducted to compare emotional-oriented coping
level at pre-intervention and post-intervention assessments in each group. In the
intervention group, there was a significant difference in the CISS-E scores in pre- and
post-intervention assessment (t(11)= 3.62, p= 0.004). In the control group, there was no
significant difference in the CISS-E scores in pre- and post-intervention assessments
(t(11)= -1.22, p= 0.24) (Table 12).
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Task-oriented coping (CISS-T): An independent-samples t-test was conducted to
compare task-oriented coping levels in the intervention and control groups at pre-
intervention, post-intervention and follow-up assessments. Two groups were not
different on their reports of task-oriented coping at pre-intervention (p= 0.16), post-
intervention (p= 0.63) and follow-up (p= 0.87) assessments (Table 13).
A paired-samples t-test was conducted to compare task-oriented coping level at
pre-intervention and post-intervention assessments in each group. In the intervention
group, there was a significant difference in the CISS-T scores in pre- and post-
intervention assessment (t(11)= -2.56, p= 0.02). In the control group, there was no
significant difference in the CISS-E scores in pre- and post-intervention assessments
(t(11)= 1.32, p= 0.21) (Table 13).
Avoidance-oriented coping (CISS-A): An independent-samples t-test was
conducted to compare avoidance-oriented coping levels in the intervention and control
groups at pre-intervention, post-intervention and follow-up assessments. Two groups
were not different on their reports of avoidance-oriented coping at pre-intervention (p=
0.11), with higher levels in the intervention group. Two groups showed a significant
difference at post-intervention (p= 0.01) and follow-up (p= 0.04) assessments, in favor
of the control group (Table 14).
A paired-samples t-test was conducted to compare avoidance-oriented coping
level at pre-intervention and post-intervention assessments in each group. In the
intervention group, there was no significant difference in the CISS-A scores in pre- and
post-intervention assessment (t(11)= -1.71, p= 0.11). In the control group, there was no
significant difference in the CISS-A scores in pre- and post-intervention assessments
(t(11)= 1.62, p= 0.13) (Table 14).
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Table 12 Emotional-oriented coping, comparison between two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 25.12 ± 5.87 20.21 ± 7.50 20.47 ± 6.73 3.62 0.004
Control 19.26 ± 5.95 21.23 ± 6.62 20.90 ± 7.99 -1.22 0.24
M = mean, SD= standard deviation
Table 13 Task-oriented coping, comparison between two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 24.41 ± 5.47 27.05 ± 4.58 25.92 ± 5.21 -2.56 0.02
Control 27.29 ± 4.86 26.10 ± 5.15 26.23 ± 4.27 1.32 0.21
M = mean, SD= standard deviation
Table 14 Avoidance-oriented coping, comparison between two groups
Pre-intervention (M ± SD)
Post-intervention (M ± SD)
Follow up (M ± SD)
Paired t-test
t p
Intervention 16.75 ± 3.91 18.03 ± 4.99 15.88 ± 4.39 -1.71 0.11
Control 13.64 ± 5.82 12.42 ± 5.06 11.95 ± 4.86 1.62 0.13
M = mean, SD= standard deviation
104
Chapter 5
General Discussion and Future Direction
This study is the first to examine the feasibility and acceptability of a tele-
mindfulness intervention in a population of dementia CGs. Although previous studies
have assessed the effect of face-to-face mindfulness interventions for dementia CGs
(Oken et al. 2010; Epstein-Lubow et al. 2011; Whitebird et al. 2013; O’Donnell 2013;
Brown, Coogle, and Wegelin 2015), to our knowledge there has been no prior research
regarding the feasibility, acceptability and effectiveness of a tele-mindfulness
intervention on psychological outcomes in dementia CGs.
Mindfulness training in an online format has been tested in other populations,
however, they all used a self-directed online course with or without a discussion board
(Morledge et al. 2013; Thompson et al. 2010, 2015; Davis and Zautra 2013; Boettcher
et al. 2014; Davis et al. 2007). To date, our study is the first of online mindfulness
training, to use a live interactive format in which participants were trained by an
instructor via the internet.
5.1 Acceptability and Feasibility
To our knowledge, this is the first study to use tele-mindfulness in family CGs of
persons with dementia. The purpose of this study was to evaluate the feasibility and
acceptability of tele-MBCT intervention in an online, live interactive setting among family
CGs of individuals with dementia.
Participants were strongly satisfied with the intervention. They valued the
intervention, saying it helped them to improve their coping skills and abilities to manage
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difficult emotions. Most of the participants were satisfied with the structure of the
intervention (length of the training, length of each session and size of the group). All
previous studies on mindfulness interventions in CGs which we found are only
quantitative. Our study is the first one to gather participant feedback on their level of
satisfaction with a mindfulness intervention. According to our participants, tele-MBCT
was an acceptable intervention, and they would recommend it to others suggesting a
high level of satisfaction with the intervention. All but one of the participants reported
that they would continue their practicing, with some of them cultivating mindfulness into
their routine activities suggesting that they experienced the training as helpful and
enjoyable. The one participant who decided not to continue practicing faced lack of time
due to her heavy load of caregiving responsibilities, consistent with current literature on
CGs’ busy lifestyle (Schulz and Martire 2004; Robison et al. 2009).
The home-based nature of the training was valued by the participants. According
to the part 1 of the Satisfaction questionnaire, the majority of the participants were
satisfied with the online technology, saying joining the sessions was easy, and the
audio-video quality was adequate. This is an important factor to consider, given the high
impact of quality of the sessions on the participant’s experience with the training. In a
previous study using a tele-Yoga intervention for people with heart failure and chronic
obstructive pulmonary disease, half of the participants were not satisfied with the
technology because of poor video-streaming quality (Selman et al. 2015). In our study
the majority of the participants did not face technical challenges; only two who were
loaned a tablet for the study experienced some technical issues which affected their
satisfaction with the intervention. These rare technical issues could have been
overcome by a more powerful tablet or faster Wi-Fi speed. Even though participants had
two online Zoom meetings before the training, technical issues did not happen during
these meetings because they were one-on-one. The amount of audio-video data is
greater in a group meeting compared to a one on one. Technical problems can become
an issue during group training if the device or internet speed is inadequate as occurred
for 2 participants in our study.
Based on our results, the online delivery method was successful, and despite a
few unexpected technical issues, it did not impair the quality of the intervention.
According to the participants and the instructor, the online training environment was rich
106
regarding emotional connection, bonding between the group participants and between
the participants and the instructor. Getting the training at home was beneficial to the
CGs regarding saving time and money. Therefore, our results suggest that an online
delivery method may be especially relevant and appropriate for CGs who experience a
notable demand on their time, energy and money (Schulz and Martire 2004; Duxbury,
Schroeder, and Higgins 2009).
One of the critical requirements for a successful mindfulness training is a quiet
place with minimum distractions. In a face-to-face setting, individuals travel to a center
that provides the training in an appropriate environment. However, in an online setting,
participants are responsible for providing a quiet space which can be a challenge for
CGs who live with their CRs. In our study, four participants in the tele-MBCT group lived
with their CRs. Two of them arranged a day program for the CR at the time of the
training, and both were satisfied with the in-home training. The other two participants
arranged a PSW, but they were interrupted during the training by them or their CRs
which was distracting and disturbing. These two CGs indicated that they would prefer
face-to-face training.
Our study was strongly successful in retaining the participants, with 92% of
enrolled CGs completing the post-intervention assessments, and 92% the 4-weeks
follow-up. High retention rates in our study suggest that the intervention was valued and
acceptable and feasible for participants despite known pressures on time and difficulty
with accepting self-care interventions among CGs. Attendance rate in the tele-MBCT
training was high, with 84% of participatants attending at least seven sessions. Despite
many known challenges that our participants faced, they continued attending the
sessions and remained in the study, implying that the intervention was appropriate and
acceptable to them. It also suggests that the delivery method was feasible regarding
easy access.
Intervention subjects were generally compliant with the home-practice
component of the intervention suggesting that despite time and other pressures this is a
feasible form of intervention for them and acceptable to them. Practice rate was
reasonable in our study, averaging 36.65 min per day over the 8-week intervention.
Considering the time constraints of our participants, this practice rate is acceptable and
is consistent with previous studies on mindfulness interventions in this population
107
(Whitebird et al. 2013). Previous studies of mindfulness interventions in dementia CGs
reported only the practice rate and had no information on the reasons hindering daily
practice or the association of daily practice with psychological outcomes. In our study,
the most common reason preventing participants from practicing was lack of time.
Managing time is a significant challenge for CGs. Taking care of an individual with
dementia requires constant attention, and as dementia deteriorates, the demand on
CGs’ time increases. Therefore CGs limit their leisure and social activities and spend
less time on self-care which can have negative effects on their mental health (Robison
et al. 2009). In our study, three subjects practiced less than 10 minutes per day. The
reason for not practicing in subject 1 was health deterioration of the CR which led to
increased caregiving chores, mental and physical frustration of the CG. Therefore, she
could not find time to practice, and even if she had a little time to spare, she was too
tired to practice. Subject 2 had a busy schedule due to caregiving responsibilities and
professional athletic activities which prevented her from practicing. Subject 3 could not
practice due to career demands. Maintaining life-work balance in the shadow of
caregiving responsibilities is a significant challenge for employed CGs (Duxbury,
Schroeder, and Higgins 2009; Murphy et al. 1997). Employed CGs are particularly
stressed because of their multiple roles (Williams 2004), therefore are at increased
need of taking care of themselves. However, significant pressure on their time and
attention because of their career, caregiving responsibilities and their life leaves them
less time for self-care. This paradox was seen in our participant who could not find time
to practice and engage fully in the intervention. Commitment to the training and daily
practicing is an important part of cultivating mindfulness into individual’s lifestyle
(Teasdale, Williams, and Segal 2013). With practicing each day, the individual gradually
learns how to disengage from the habitual thinking and engage in the present moment
which can have positive effect on psychological distress (Whitebird et al. 2013; Siegel
2007).
Participants were highly satisfied with the workbook. The workbook was well
written and easy to read with a CD containing the practices’ audio guides. It had several
advantages including being a reference resource for missed sessions and providing
detailed information on each session and practices. It also provided a space for
recording reflection and self-observation exercises. In previous studies, participants
108
were provided with written materials as part of the online course of mindfulness
(Morledge et al. 2013; Boettcher et al. 2014; Davis et al. 2007) and not a distinct
workbook.
Overall, considering retention rate, attendance and practice rate and participants
high satisfaction with the tele-MBCT and the online delivery method, tele-MBCT is
appropriate, acceptable and feasible among this group of family CGs of persons with
dementia.
5.2 Psychological outcomes
The second purpose of this study was to assess the effectiveness of tele-MBCT
in improving stress, depressive symptoms, anxiety, self-compassion and coping
strategies among family CGs.
Pre-post improvements in self-compassion, task-oriented and emotion-oriented
coping were noted in the intervention group. Pre-post results in stress, depression and
anxiety were not significant in the intervention group. In the control group pre-post
results were not significant for any of the psychological outcomes.
These results are consistent with other studies that have found positive effects of
mindfulness interventions on self-compassion, coping skills, stress and depression
(Whitebird et al. 2013; O’Donnell 2013). Our negative result regarding anxiety is
consistent with a study of MBSR for family CGs (Epstein-Lubow et al. 2011) which
reported the same result as ours but contrasts with a previous study that reported
improvement in anxiety after a face-to-face mindfulness intervention (Whitebird et al.
2013). Both these studies used the same anxiety measure as our study. However, the
inconsistency in results may speak to the larger sample size (N= 78) in Whitebird et al.
trial compared to a smaller one (N= 9) in Epstein-Lubow et al. study, and difficulties in
measuring anxiety which is a state dependent affect that can fluctuate a lot in CGs and
is responsive to environmental stresses.
109
Improving the psychological health of CGs has become an essential focus in
dementia care as the number of Canadian families affected by major neurocognitive
disorders is increasing (Chambers, Bancej, and McDowell 2016) and the negative
health consequences of caregiving are clear (Chang, Chiou, and Chen 2010; Roth,
Fredman, and Haley 2015; Robison et al. 2009). Stress is a major contributing factor to
mental and physical health, and chronic stress is associated with a higher risk of
anxiety, and depression (McDowell 2006; Clark, Bond, and Hecker 2007). This is
particularly so for dementia CGs who experience emotional and physical distress over
an extended period of time (Fredman et al. 2010; Pinquart and Sörensen 2003; Roth et
al. 2009; Schulz and Sherwood 2008). Our participants, with an average duration of
caregiving of 5 years, reported a high levels of stress at baseline. At post-intervention,
the stress level of the intervention group reduced and remained the same at follow-up.
The level of stress in the control group did not change at post-intervention and follow-
up. Reported depression levels were high at baseline. Similar to stress measures, at
post-intervention, depression levels decreased in the tele-MBCT group and continued to
improve at follow-up, while in the control group depression levels increased at post-
intervention and follow-up.
It has been shown that mindfulness intervention is effective in improving stress
(Chiesa and Serretti 2009), depression (Crane et al. 2012; Chiesa, Mandelli, and
Serretti 2012) and anxiety (McManus et al. 2012; Williams et al. 2011). Mindfulness may
affect mental outcomes by altering repetitive negative thinking, self-compassion and
cognitive and emotional reactivity (Gu et al. 2015). The foundational features of
mindfulness, i.e. being present at the moment with nonjudgmental awareness (Kabat-
Zinn 1990) has been shown to decrease rumination and worry (Borders, Earleywine,
and Jajodia 2010). Rumination and worry contribute to a range of negative
psychological outcomes including depression, anxiety, stress and negative mood
(Ehring and Watkins 2008; Segerstrom et al. 2000; Muris et al. 2005). For family CGs of
dementia patients, rumination over past events and losses and worry about the
unpredictable fearful future can be significant which can increase the risk of
psychopathologies in them.
Mindfulness affects stress appraisal, a cognitive process that an individual uses
to evaluate or appraise events. Individuals experience stress not only from of the
110
stressors or events themselves but also from their appraisal that such stressors are too
demanding or exceed their adaptive capacities (Folkman et al. 1986). The mindful
attention in the present moment that is practiced in mindfulness training disengages the
person from the doing mode and opens the path to see the events, internal and external
stimuli as they occur (Segal, Williams, and Teasdale 2002). The quality of mindful
attention also involves awareness and acceptance in a nonjudgmental way (Kabat-Zinn
1990) which enables the individual to see the events as they are without adding their
cognitive manipulation and distortion to these events (Dimidjian, Kleiber, and Segal
2010; Segal, Williams, and Teasdale 2002). By fostering mindful attention, an individual
gains the ability to view situations in more benign or neutral terms (Weinstein, Brown,
and Ryan 2009) which may enhance mental well-being by decreasing emotional
reactivity toward potentially stress-inducing stimuli (Creswell et al. 2007). This may
particularly benefit CGs who are exposed to many different stressors throughout their
dementia care journey.
Our study results are partially aligned with prior work that suggests that
mindfulness practice fosters adaptive coping, with more task-oriented and less emotion-
and avoidance-oriented coping (Weinstein, Brown, and Ryan 2009). In mindfulness,
individuals learn through reflection and self-observation skill to observe internal
thoughts, emotions, and events as they occur instead of getting caught in past- or
future-focused negative thinking loops (i.e. rumination, worry, over-identification and
catastrophizing). Therefore, they become able to cope in more adaptive ways rather
than in ways that cause stress perpetuation, negative psychological outcomes and ill-
being (Weinstein, Brown, and Ryan 2009; McCullough et al. 2007). At post-intervention,
the score of emotion-oriented coping of the intervention group reduced and remained
the same at follow-up. However, the score of emotion-oriented coping of the control
group increased at post-intervention and remained the same at follow-up. The pre-post
result in the emotion-oriented coping scores in the intervention was statistically
significant in favor of the intervention. At post-intervention, the score of task-oriented
coping of the intervention group increased and remained the same at follow-up.
However, the score of task-oriented coping of the control group slightly decreased at
post-intervention and follow-up. The pre-post result in the task-oriented coping scores in
the intervention was statistically significant in favor of the intervention. Avoidance-
111
oriented coping scores were not different between groups at baseline, but contrary to
the expected outcome, at post-intervention and follow-up, avoidance-oriented coping
increased in the tele-MBCT group while it decreased in the control group. This finding is
surprising, and the reason is not immediately evident. Even thoughsome adaptive
coping (more task, less emotion) improved as expected with the tele-MBCT group,
avoidance coping increased. Overall, the coping results are partially consistent with the
literature on the impact of mindfulness on coping.
Our results are in keeping with expected positive effects of mindfulness on self-
compassion (Keng et al. 2012; Bergen-Cico and Cheon 2014). Self-compassion is a
healthy attitude toward oneself which is associated with higher life satisfaction,
decreased risk of anxiety and depression (Neff 2003). Post-intervention and follow-up,
self-compassion scores of tele-MBCT participants, improved, while it decreased in the
control group. Pre-post improvement in self-compassion in the intervention group was
statistically significant. Our results are consistent with previous studies on mindfulness
in CGs (O’Donnell 2013). Individuals caring for a family member with dementia can be
at the risk of losing sight of self-care in the shadow of chronic stress and lack of time. It
has been shown that CGs practice fewer health-promoting self-care behaviors than
non-CGs (Acton 2002). Self-compassion promotes healthy self-care behavior that
encourages and maintain well-being. Individuals with higher levels of self-compassion
are more likely to engage in health-promoting self-care practices and health promotion
(Neff 2003).
5.3 Limitations and future direction
Our study had some limitations. The relatively small number of participants in the
intervention and control groups limits the statistical power of the study and leads to
some caution about the reliability of the conclusions about the effectiveness of the
intervention. In future studies, larger sample sizes are needed to evaluate the
effectiveness of the online mindfulness intervention.
112
The gender balance of subjects was skewed in the direction of females. The
homogeneity of female CGs limits the generalizability of the results to male CGs. In
future studies, equal number of male and female is needed for a better generalizability
of the results
The follow-up period in our study was relatively short. Results showed promising
short-term benefits of tele-MBCT for improving the psychological health of CGs, but
enduring long-term effects of the intervention were not demonstrated and awaited
further study. Maintaining daily practice over time is challenging and identifying effective
strategies, appropriate support and utility of follow-up “booster” sessions for continuing
practice may be important elements in studying maintenance of potential long-term
effects of mindfulness interventions.
Sessions were not audio or video recorded, so observational quality control was
not possible. Participants also could not compensate for the missing sessions by
watching recorded sessions, although they had the book as a reference for the missing
sessions. In future studies of online mindfulness intervention, particularly with larger
numbers and different trainers, recording the session may be important.
The intervention in this study was group-based which might add to the strength of
the intervention. However, the results of the mindfulness intervention might be clouded
by the potential effects of the support that can arise in the group process. Having an
active control group with a support component might address this problem in future
studies.
The online setting of the study created a few limitations. Since Zoom is a high-
quality teleconferencing program, sufficiently powerful devices and internet speed are
critical for a Zoom session with high video and audio quality. Therefore, the participation
of individuals who do not have these technical resources might be limited by a
technology gap. We addressed this issue in part by loaning the participants an
adequate tablet. However, the Wi-Fi speed could not be addressed. Providing
participants with both adequate computer equipment like an adequate tablet plus a
high-speed Wi-Fi connection should be taken into consideration in future studies using
113
an online setting. Only CGs who had adequate confidence and competence in using a
computer were recruited to this study, which limits the generalizability of our results,
particularly with regard to its relevant to the current cohort of often technologically less
sophisticated older generation CGs.
Given the goal of enhancing CGs’ inner strength, a resilience measure may have
strengthened our evaluation and could be taken into consideration in future studies.
Finally, since the training was held on a weekday afternoon, the participation of
full-time employed CGs was limited. Therefore, extrapolation of our results to employed
CGs might be limited. In future studies, this issue might be addressed by having a
distinct group on weekends for the employed subgroup of CGs.
5.4 Conclusions
In conclusion, our results show that tele-MBCT is a feasible and acceptable
intervention among family caregivers of people with dementia. Tele-MBCT may be
effective in improving key psychological outcomes (self-compassion) and adaptive
coping in CGs. While further research with a larger sample, matched control group,
longer follows up, and enhanced technology is warranted; this study suggests that Tele-
MBCT offers a novel and exciting opportunity for an innovative, feasible intervention to
improve well-being and psychological health in family CGs of individuals with dementia.
114
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Appendices
Appendix 1: Satisfaction Questionnaire
Part 1 Strongly agree
Agree Neutral Disagree Strongly disagree
Overall, I was disappointed with the program
Overall, the program was helpful to me
Overall, the program addressed my needs
Overall, I was satisfied with the program
I would recommend this program to someone else
The program improved my coping skills
The program improved my ability to manage difficult emotions
Following the program, I am more depressed
Following the program, I am more anxious
The size of the group was appropriate
I did not find it helpful to include people in the same group who are dealing with different stages of the illness
The length of the program was adequate
The length of each group session was adequate
Overall, I was satisfied with the online technology (Zoom)
It was easy to join the sessions via the Internet
The quality of Zoom was adequate
After participating MBCT online, I would like to join other online programs
I would recommend joining online programs to someone else
Overall the “Mindful Way Workbook” was helpful
I could regularly read and use the “Mindful Way Workbook”
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Part 2: Open questions
How was your experience with tele-MBCT?
How acceptable was tele-MBCT for you?
Will you continue to practice what you have learned in the Tele-MBCT sessions?
What challenges did arise for you with tele-MBCT?
How was your experience with attending the program at home without any need to
travel?
What challenges did arise for you with technology during tele-MBCT?
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Appendix 2: Screening Questionnaire
TELE-MINDFULNESS FOR DEMENTIA’S FAMILY
CAREGIVERS
Date: _________________
Name: _________________________________________________
Street Address: _______________________________________
City: ________________________________ Postal code: ___________________
Phone: ____________________________ E-mail: ___________________________
Name of your Family Doctor: __________________________________
Age: _________________
Gender: Male Female
What is your highest level of Education?
No schooling completed
Elementary – grade _______
High School – grade ________
College
University – degree _______
What is your current Employment status?
Employed, full time
GN#: _____________ (for admin only)
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Employed, part time
Self employed
Out of work
Homemaker
Student
Retired
Unable to work
Others, please specify: _________________
What is your current Marital status?
Single, never married
Married or domestic partner
Widowed
Divorced
Separated
Others, please specify: ____________________
ELIGIBILITY QUESTIONS:
Do you have a family member/members with dementia? Yes No
If Yes:
How long have they had been diagnosed with dementia? ____________________
Do you know their specific type of dementia?
Yes, please specify: ________________
No
Are you the main person who provides care (CARE GIVER) for the person/s with
dementia? Yes No
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Do you live in the same house as the person with dementia?
Yes No
What is your relationship to the person with dementia?
Child
Spouse/partner
Sibling
Friend
Others, please specify: _________________
How long have been providing care for the person with dementia? __________________
Personal Health Information:
Past medical history:
Have you been diagnosed with any physical diseases? Yes No
If Yes, please specify: _______________________
Have you ever been diagnosed with any psychiatric disorders?
Yes No
If Yes, please specify from the list below:
Depression
Anxiety
Bipolar disorder
Psychosis
Other, please specify: _____________________
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Have you ever felt desperate and had ideas of harming yourself?
Yes No
If Yes:
Have you felt like harming yourself in the past month?
Yes
No
If Yes:
Have you told your health care professional?
Yes
No_________________
Do you have a history of substance misuse?
Yes No
If Yes, please specify from the list below:
Alcohol
Marijuana
Sedatives
Pain medication
Tranquilizers
Other, please specify: ______________________
What type of medications are you currently taking?
Pain medications
Sleep medications
Medications for anxiety
Other, please specify: ________________________________
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In the past 3 months, have you started new medications:
Yes, please specify ____________________
No
In the previous year, have you participated in any mind-body program such as meditation
practices, yoga or tai chi?
Yes, please specify ____________________
No
Are you currently attending in any support programs for caregivers?
Yes, please specify ____________________
No
Access to Computer and Internet:
Do you own a computer at home? Yes No
If Yes, how often do you use your computer?
Never/rarely
Monthly
Less than monthly
Weekly
Daily
Do you have access to the internet at home? Yes No
Do you use the internet? Yes No
If Yes,
How long have you been using the internet? _________________
How would you rate your computer skill level?
Never used a computer
Beginner
Competent
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Appendix 3: Figures of correlations between attendance and psychological outcomes change (post- pre)
Attendance and daily practice: a significant positive correlation (r = 0.76, p= 0.01)
Attendance and self-compassion change: a significant positive correlation (r = 0.61, p =
0.03)
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Attendance and stress change: negative correlation revealed a trend toward significance
(r = -0.57, p = 0.05)
Attendance and depression change: no significant correlation (r = -0.45, p = 0.13)
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Attendance and anxiety change: no significant correlation (r = -0.33, p = 0.29)
Attendance and emotional-oriented coping change: no significant correlation (r = -0.37, p
= 0.23)
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Appendix 4: Figures of correlations between daily practice and psychological outcomes change (post- pre)
Daily practice and self-compassion change without the outlier: no significant correlation
change (r = 0.59, p = 0.09)
Daily practice and stress change: no significant correlation (r = -0.32, p = 0.36)
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Daily practice and depression change: no significant correlation (r = -0.16, p = 0.65)
Daily practice and anxiety change: no significant correlation between (r = -0.06, p = 0.86)
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Daily practice and emotional-oriented coping change: no significant correlation (r = -0.54,
p = 0.10
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Appendix 5: Statement of Contribution
Shadi Zarei (author) prepared this dissertation. SZ arranged the recruitment strategies,
designed and distributed the poster and flyer for the study, arranged and performed the
interviews with participants and the instructor in different phases of the study, obtained
informed consents, scored questionnaires in three time point assessment, designed and
collected practice logs, performed the online Zoom trainings and troubleshoot in
different phases of the study. SZ also performed the statistical analysis of the data.
Dr. Joel Sadavoy (supervisor): provided theoretical, clinical, and methodological
mentorship for all aspects of this work, including guidance in the planning, execution
and analysis of the project, and critical revision of this thesis document.
Dr. Carmela Tartaglia (Program Advisory Committee member): Provided mentorship
and assistance throughout all phases of this work, including interpreting the results and
revision of this thesis document.
Dr. Brenda Toner (Program Advisory Committee member): Provided mentorship and
assistance throughout all phases of this work, including interpreting the results and
revision of this thesis document.
Ms. Gita Lakhanpal: was the instructor of tele-MBCT and provided feedback after the
intervention.
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Appendix 6: Copyright Acknowledgements
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