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The number of persons with dementia is steadily growing, as is the number of individuals supporting persons with dementia. Primary caregivers of persons with dementia are most often family members or spouses of the persons with dementia, and they are more likely to experience increased stress and other negative effects than individuals who are not primary caregivers. Although in-person support groups have been shown to help buffer the negative impacts of caregiving, some caregivers live in isolated or rural communities and are unable to make the burdensome commitment of traveling to cities. Using an interdisciplinary approach, we developed a mobile smartphone support app designed for primary caregivers of persons with dementia, with the goal of reducing caregiver burden and easing stress. The app features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), because MBSC has been linked to minimizing stress, depression, and anxiety.
The primary objectives of our program are twofold: to explore the feasibility of a 12-week mobile support program and to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program.
Our feasibility study used a 2-phase participatory pretest and posttest design, focusing on acceptability, demand, practicality, implementation, and efficacy. At phase I, we recruited 57 primary caregivers of persons with dementia (mean age 76.3, SD 12.9 years), comprising spouses (21/57, 37%), children (21/57, 37%), and friends or relatives (15/57, 26%) of persons with dementia, of whom 29 (51%) completed all measures at both pre- and postprogram. The content of the program featured a series of MBSC podcasts. Our primary outcome measure was caregiver burden, with secondary outcome measures including coping styles and emotional well-being. Daily ecological momentary assessments enabled us to ask participants, “How are you feeling today?” Phase II of our study involved semistructured follow-up interviews with most participants (n=21) who completed phase I.
Our findings suggest that our app or program meets the feasibility criteria examined. Notably, participants generally accepted the program and believed it could be a useful resource. Emotional well-being increased significantly (
Although there were no significant changes in caregiver burden, we were encouraged by the increased emotional well-being of our participants following the completion of our program. We also conclude that our app or program demonstrated feasibility (ie, acceptability, practicality, implementation, and efficacy) and can provide a much-needed resource for primary caregivers of persons with dementia. In the subsequent version of the program, we will respond to participant feedback by incorporating web-based weekly sessions and incorporating an outcome measure of self-compassion.
Dementia is a growing health concern that currently affects approximately 47 million people worldwide [
Although stress can often be alleviated through conventional education and counseling programs [
To improve access to programs for caregivers who are not able to attend in person, the delivery of psychoeducational support programs through a mobile app is a promising, scalable solution. The ubiquitous nature of smartphones provides unprecedented opportunities for both content delivery and data collection. A systematic review [
Although extensive research has focused on developing programs to alleviate burden in primary caregivers of persons with dementia [
For primary caregivers of persons with dementia, mindfulness-based interventions [
The overall objectives of this project are to: (1) explore the feasibility of a 12-week mobile support program, and (2) conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program.
This feasibility study used a 2-phase participatory pretest and posttest design. Feasibility studies, which are considered particularly relevant to real-world settings, help to determine whether an intervention is appropriate for further testing and to identify the modifications in the research methods and protocols required [
Ethics approval for this study was obtained from the University of Saskatchewan (Behavioral Ethics Research Board #1014). Phase 1 involved the co-design of a mindfulness-based self-compassion (MBSC) intervention developed specifically for primary caregivers of persons with dementia. Our interdisciplinary team comprised researchers from the disciplines of nursing, nutrition, and computer science, as well as community representatives. Community advisors included one staff member from the Alzheimer Society of Saskatchewan (ASOS) and 2 patient family advisors (TH and BW). The advisory members helped to ensure all facets of the project reflected the values and interests of primary caregivers of persons with dementia and contributed to the ecological validity of the project [
On the basis of caregivers’ lived experiences and preferences, the expertise of our self-compassion consultants and our review of the literature, the content for a 12-week MBSC and support program was co-designed within a 6-month time frame, incorporating existing web-based caregiver support resources developed by the ASOS or other reputable advocacy agencies (eg, Alzheimer’s Association), as appropriate. MBSC consultants developed the original material for this program in the form of 14 podcasts, 12 meditations, and 4 body-based practices.
Co-designed app content.
Topics | Links to existing resources | Content example |
Communication and dealing with difficult emotions |
Difficult situations (eg, repetition and memory loss; wandering, paranoia) Difficult emotions (eg, guilt, anger, frustration) |
Podcast “Who should Practice Mindfulness and Self-Compassion?” |
Coping with stress, anxiety, and depression; Change and transition |
Reducing caregiver stress Coping Overwhelm Rumination Emotional regulation YouTube video clip |
Cognitive behavioral practice “Thought stopping” |
Relationships, intimacy, and sexuality |
Role changes, support, relationship dynamics, protection, loss, dealing with limited supports, boundaries |
Meditation “Opening the Heart Space” |
Grief and loss |
Ambiguous loss and grief Anticipatory grief Loss of roles, relationships, independence, and history Changes in identity and personality |
Meditations “Three Minute Breathing Space” |
Caregiver fatigue and stress |
Fatigue and exhaustion Stress Depletion Caregiver burden Respite Time for self-care and guilt |
Podcast “Introduction to Loving Kindness Practice” |
Positive ways to cope with caregiver fatigue and burn-out |
Safety Insomnia and interrupted sleep Nutrition and activity |
Body scan practice |
More positive ways to cope with caregiver fatigue and burn-out |
Developing resilience Gratitude Self-care |
Podcast “The Power of Gratitude” |
The program was delivered using the Ethica platform co-designed and codeveloped by the coauthor NO and Ethica Data Services. The Ethica platform is designed to aid in the creation, delivery, and data collection of smartphone-based apps [
Daily ecological momentary assessments (EMAs) sampled participants’ responses to the question “How are you feeling today?” The program offered a range of MBSC tools (including bespoke audio and video recordings and links to external resources such as relevant YouTube videos) with varying lengths between 1 and 20 minutes that caregivers could incorporate into their lives in ways that worked best for them [
Phase 2 consisted of a pre- and posttest design using validated instruments delivered through the app and qualitative data from postprogram individual interviews. The target sample size was 40 individuals. Information on demographic characteristics and current participation in support groups was collected after informed consent was obtained at enrollment. The Ethica app was installed on participants’ smartphones, and they received proper instruction on the use and privacy guarantees of the technology, including how to temporarily pause data collection. The duration of use data was gathered through the Ethica app use functionality. At the conclusion of 12 weeks or at termination of the program, participants were offered the opportunity to participate in individual telephone or Zoom interviews focusing on the experience of using the app.
Caregivers were recruited by the ASOS using direct contact and social media, by linking the research team with ASOS caregiver programs in the province, and through media coverage and broadcast interviews. The eligibility criteria for this study included self-identification as a primary caregiver of a community-dwelling family member who has memory loss consistent with dementia, aged ≥18 years, able to read and speak English, and access to a smartphone. Participants received a CAD $100 (US $80.4) gift card to a grocery store of their choice to offset the data plan costs associated with using their personal devices during this study.
Caregiver burden, the primary outcome, was measured using the Burden Scale for Family Caregiving (BSFC) [
The secondary outcomes included changes in coping style and emotional well-being. Short questionnaires were delivered daily via the app to the participants on a rotating basis. One 2-item scale from the Brief-COPE instrument [
In addition to the Brief-COPE, the World Health Organization (WHO)-5 Well-Being Scale was completed weekly. The WHO-5 is a short, commonly used, psychometrically sound measure of positive emotional well-being with a single cumulative score, where 100 represents the best possible quality of life [
This paper summarizes data from field notes kept by research assistants during enrollment and program delivery, as well as interview data related specifically to the technical aspects of the app in terms of acceptability, practicality, and implementation for the 72% (21/29) of participants included in the quantitative analyses who also completed the final interviews.
Pearson correlations were used to assess the relationships between raw scores on the BFSC and personal characteristics (continuous variables), WHO-5 scores, and the three Brief-COPE (emotion-focused, problem-focused, and dysfunctional coping styles) summary scores. Descriptive analyses were performed to detect differences in scores at baseline and at the end of the program on the key variables of interest (ie, burden, coping styles, and well-being). Wilcoxon signed-rank tests were used to compare baseline and final scores on the BSFC, the WHO-5, and the three (ie, emotion-focused, problem-focused, and dysfunctional coping styles) summary scores on the Brief-COPE. A
A total of 77 participants were enrolled in the study, although 16 did not open the app. One of these individuals indicated:
A total of 53 participants (48/53, 91% female) with a mean age of 58.0 (SD 13.6) years were recruited into the study between September 2019 and March 2020. The persons with dementia for whom participants were caring included spouses (19/53, 36%), parents (17/53, 32%), and other friends or relatives (17/53, 32%) with a mean age of 77.6 (SD 12.0) years. Complete baseline and final data sets (BFSC, WHO-5, and Brief-COPE) were available for 51% (29/57) of participants who completed all questionnaires at both baseline and the end of the program and were included in the data analysis below. Demographic characteristics of excluded participants were compared using 2-tailed
Demographic and personal characteristics (N=29).
Characteristics | Value, n (%) | |
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Female | 26 (90) |
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Male | 3 (10) |
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Spouse | 11 (38) |
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Child | 11 (38) |
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Other relative | 6 (21) |
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Friend | 1 (3) |
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Yes | 11 (38) |
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No | 18 (62) |
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Yes | 24 (83) |
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No | 5 (17) |
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2 years or less | 13 (45) |
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3-6 years | 7 (24) |
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7 years or more | 9 (31) |
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Excellent | 4 (14) |
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Very good | 14 (48) |
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Good | 9 (31) |
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Fair | 2 (17) |
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Poor | 0 (0) |
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Excellent | 0 (0) |
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Very good | 4 (14) |
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Good | 5 (17) |
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Fair | 16 (55) |
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Poor | 4 (14) |
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Memory loss | 28 (97) |
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Refusing help | 16 (55) |
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Repetitive behaviors | 15 (52) |
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Sleep disturbances | 13 (45) |
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Paranoia | 10 (34) |
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Hoarding | 8 (28) |
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Aggression | 6 (21) |
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Wandering | 6 (21) |
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Other | 10 (34) |
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1-3 | 13 (45) |
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4 or more | 16 (55) |
Understanding the acceptability, practicality, and implementation of using an app to deliver a psychoeducational program targeted at caregivers of persons with dementia was central to this study, especially because of the wide variation in possible caregiver ages and comfort with technology. Participants generally found the app easy to use and user-friendly, although several required additional assistance from the research assistant to address navigation problems early in the program. One participant noted:
I’m not a very techy person, so I was really nervous about it at first...But anyway, once I got that it was fine.
Many participants noted the convenience of having the content available on their phones:
I liked that it was on my phone. I liked that I could access it at my convenience. And I do use my phone pretty much like my right hand all the time.
The availability of multiple types of content was very appealing to many participants:
It’s got a variety of different things in one place. I like that. It’s like a one stop shop.
The incorporation of EMAs has received numerous favorable comments:
The most useful part was the, “How are you feeling,” survey, every day. It made me sit down and think about the last few hours, and was how stressed I really was, or maybe I wasn’t as stressed as I thought I was. And I’ve come to look forward to that, so I actually have a minute to sit down and say, “Well how was just the last bit?” I found that really, really helpful.
Incorporation of appropriate YouTube videos was appreciated by most participants, but several participants did not like the automatic redirection to alternate videos that were not part of the program. Several commented that they wished that the program could also be available on their computers to improve readability.
Over the 12 weeks of the program, participants’ mean hours of app use were 15.60 (SD 28.83) hours with a median time of 5.31 hours (IQR 3.0-11.1).
As there was minimal variability in the BFSC, WHO-5, and Brief-COPE subscale scores obtained midprogram and at the end of the program, this study compared only baseline and the final scores obtained on these instruments.
At baseline, the median BFSC score was 45 (IQR 35.5-50; range 31-61). Most participants were categorized as having either no to mild burden (12/29, 41%) or moderate burden (16/29, 55%), with 3% (1/29) reporting severe burden.
Frequencies of reported baseline coping strategies (N=29).
Coping strategy | Frequency of use, n (%) | ||||||||
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Not at all | A little bit | Medium amount | A lot | |||||
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I have been trying to see it in a different light, to make it seem more positive. | 2 (7) | 11 (38) | 11 (38) | 5 (17) | ||||
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I have been getting comfort and understanding from someone. | 3 (10) | 10 (34) | 5 (17) | 11 (38) | ||||
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I have been looking for something good in what is happening. | 7 (24) | 8 (28) | 9 (31) | 5 (17) | ||||
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I have been making jokes about it. | 16 (55) | 7 (24) | 3 (10) | 3 (10) | ||||
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I have been accepting the reality of the fact that it has happened. | 4 (14) | 2 (7) | 9 (31) | 15 (52) | ||||
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I have been trying to find comfort in my religion or spiritual beliefs. | 11 (38) | 4 (14) | 3 (10) | 11 (38) | ||||
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I have been learning to live with it. | 0 (0) | 3 (10) | 13 (45) | 13 (45) | ||||
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I have been praying or meditating. | 9 (31) | 4 (14) | 5 (17) | 11 (38) | ||||
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I have been making fun of the situation. | 21 (72) | 7 (24) | 0 (0) | 1 (3) | ||||
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I have been concentrating my efforts on doing something about the situation I am in. | 2 (7) | 9 (31) | 9 (31) | 9 (31) | ||||
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I have been getting emotional support from others. | 5 (17) | 13 (45) | 8 (28) | 3 (10) | ||||
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I have been taking action to try to make the situation better. | 0 (0) | 10 (34) | 11 (38) | 8 (28) | ||||
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I have been getting help and advice from other people. | 3 (10) | 15 (52) | 10 (34) | 1 (3) | ||||
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I have been trying to come up with a strategy about what to do. | 3 (10) | 10 (34) | 5 (17) | 11 (38) | ||||
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I have been trying to get advice or help from other people about what to do. | 3 (10) | 18 (62) | 6 (21) | 2 (7) | ||||
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I have been thinking hard about what steps to take. | 1 (3) | 6 (21) | 8 (28) | 14 (48) | ||||
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I have been turning to work or other activities to take my mind off things. | 6 (21) | 7 (24) | 7 (24) | 9 (31) | ||||
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I have been saying to myself “this isn’t real.” | 17 (59) | 8 (28) | 2 (7) | 2 (7) | ||||
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I have been using alcohol or other drugs to make myself feel better. | 21 (72) | 3 (10) | 4 (14) | 1 (3) | ||||
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I have been giving up trying to deal with it. | 16 (55) | 8 (28) | 2 (7) | 3 (10) | ||||
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I have been refusing to believe that it has happened. | 21 (72) | 4 (14) | 4 (14) | 0 (0) | ||||
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I have been saying things to let my unpleasant feelings escape. | 9 (31) | 11 (38) | 6 (21) | 3 (10) | ||||
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I have been using alcohol or other drugs to help me get through it. | 22 (76) | 5 (17) | 2 (7) | 0 (0) | ||||
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I have been criticizing myself. | 2 (7) | 11 (38) | 10 (34) | 6 (21) | ||||
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I have been giving up the attempt to cope. | 17 (59) | 11 (38) | 0 (0) | 1 (3) | ||||
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I have been doing something to think about it less, such as going to movies, watching television, reading, daydreaming, sleeping, or shopping. | 2 (7) | 11 (38) | 11 (38) | 5 (17) | ||||
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I have been expressing my negative feelings. | 3 (10) | 15 (52) | 9 (31) | 2 (7) | ||||
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I have been blaming myself for things that happened. | 9 (31) | 4 (14) | 5 (17) | 11 (38) |
Burden ratings and participant and care recipient characteristics (N=29).
Characteristics | None to mild burden (0-41; n=12), n (%) | Moderate to severe burden (≥42; n=17), n (%) | |
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Spouse | 7 (64) | 4 (36) |
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Parent | 2 (18) | 9 (82) |
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Other | 3 (43) | 4 (57) |
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Yes | 3 (27) | 8 (73) |
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No | 9 (50) | 9 (50) |
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Excellent or very good | 9 (50) | 9 (50) |
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Good, fair, or poor | 3 (27) | 8 (73) |
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Excellent, very good, or good | 6 (67) | 3 (33) |
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Fair or poor | 6 (30) | 14 (70) |
Comparison of baseline and end-of-program scores.
Outcome | Baseline median (IQR) | End median (IQR) | WS-Ra ( |
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Burden scale | 45 (35.5-50) | 42 (35-48) | −0.56 | .57 |
WHO-5b | 52 (28-72) | 52 (32-80) | −2.09 | .04c |
Brief-COPE emotion-based coping | 18 (15-22) | 15 (13-18.5) | −2.49 | .01c |
Brief-COPE problem-based coping | 18 (15-22) | 18 (15-21.5) | −0.45 | .66 |
Brief-COPE avoidance and dysfunctional coping | 21 (18-15.5) | 21 (17.5-26.5) | −0.55 | .59 |
aWilcoxon signed rank.
bWHO-5: World Health Organization-5.
cDifference statistically significant at
This study examined 4 aspects of feasibility (acceptability, practicality, implementation, and efficacy) in relation to a co-designed web-based support program for primary caregivers of persons with dementia delivered via an app on a smartphone. Our deployment results revealed that participants valued the
The interdisciplinary collaboration between health care researchers and computer scientists afforded a unique opportunity to capitalize on the expertise of multiple disciplines and to deploy a program in a reasonably short window. Although each discipline has its own unique body of knowledge and jargon, ongoing discussions between team members allowed all the voices to be heard in a respectful manner, to achieve consensus on key aspects of the project, and to undertake a study that no one team member could have achieved without such a collaboration.
The participatory, co-design approach to this project ensured that the perspectives of key stakeholders such as primary caregivers of persons with dementia and the Alzheimer’s Society were incorporated into content and program development, which we consider a strength of our project. The value of co-designed programs has been amply demonstrated in the literature, notably in the field of technological support for chronic diseases and/or ailments, given the purposes of our research [
By incorporating perspectives of primary caregivers of persons with dementia and members of the Alzheimer’s Society in the development process of our support program, we adhered to the guiding principle of integrated care [
The content and data collection instruments were successfully delivered via the smartphone as planned, but only 51% (29/57) of participants completed all questionnaires. Although data collection using smartphones offers the advantages of ecological validity and real-time data, missing data in these types of studies is a well-recognized problem [
Evaluation of the short-term efficacy of this intervention to support primary caregivers of persons with dementia yielded mixed results. During this feasibility study, participants chose their own level of engagement with the content of the program, and the hours spent on the content varied widely, as did the content that was accessed by participants. As this study sought to establish the feasibility of delivering this program via smartphones, the duration of the program and follow-up period were relatively constrained.
No change in caregiver burden scores was detectable immediately following the program, which may be attributable to several factors. As caregiver burden is influenced by diverse factors [
As there was no significant reduction in caregiver burden, our primary outcome measure, from baseline to post intervention (
No differences were detected in problem-based or avoidance-dysfunctional coping styles, but there was an unexpected decrease in emotion-based coping. We suspect that a variety of factors contributed to this decrease in emotion-based coping following our intervention. For instance, diminished health of persons whom our participants were caring for might have made it more difficult for caregivers to engage in emotion-focused coping behaviors that make light of the situation, like “I’ve been making jokes about it.” Some of our participants noted in the follow-up interviews that the health of their loved ones deteriorated significantly over the course of the 8-week program, which could have been partly responsible for the unexpected decrease in emotion-based coping approaches. The introduction to MBSC approaches in this study could potentially strengthen cognitive restructuring as a coping strategy but has not been identified as affecting the degree to which people use problem solving or avoidance and dysfunctional coping [
Emotional well-being of participants showed a small, but statistically significant improvement, although this failed to meet the 10% change in scores recommended to signify a
Our study enabled primary caregivers of persons with dementia to access resources from the convenience of their smartphones that they may not otherwise have been able to use, especially considering that some of the content was developed specifically for this project (eg, MBSC podcasts). Although it is possible that some of the primary caregivers of persons with dementia could attend in-person support groups where similar content could be available, others cited their geographic isolation in remote communities or rural settings as a barrier to doing so, and that having the material so readily available to them was particularly helpful, as was the user-friendly nature of our app and content. In addition, with current COVID-19 restrictions, in-person support group meetings may be less prevalent in various locations.
One potential shortcoming of our research is rooted in the nature of feasibility studies, as not all possible outcomes can be measured. To reduce the burden on respondents, we did not measure changes in MBSC, which have typically been evaluated using the Self-Compassion Scale (SCS) [
Because of missing data, only half of the questionnaires could be included in the final analyses, although we found no differences in the demographic characteristics of those who completed all questionnaires and those who did not.
The experimental nature of our study ensured that we assessed measures pre- and postintervention. However, a control group was not included in our study, which can be considered a limitation. The rationale behind our decision to not include a control group was to ensure that participants were not deceived, particularly given their vulnerable status as primary caregivers of persons with dementia, and also to better assess the feasibility of our program by enrolling all participants in it. Ultimately, we wanted to know if the core elements of our program were well received by participants, although we acknowledge that it might be advisable for future iterations to include a control group. In addition, a 1-month postintervention follow-up assessment is recommended to researchers to examine whether intervention effects can withstand the test of time. In this study, we interviewed participants approximately 1 month after they completed the program to collect their thoughts on its acceptability, implementation, and feasibility, although quantitatively assessing primary outcome measures would be advantageous.
An additional limitation is that the vast majority of participants were female (26/29, 90%), meaning that although the program was received favorably overall, its generalizability is somewhat unknown. For instance, the male primary caregiver of persons with dementia might reject our program initially or they might not find it effective. However, there was male representation among our patient family advisors (ie, TH), though perhaps future iterations of the program should be informed by a more equal representation of males and females across varying age groups.
Our program as currently structured has value and utility for primary caregivers of persons with dementia, as evidenced by our results and in postintervention interviews with our participants. However, we acknowledge ways that our program could be improved in future iterations, starting with usability. Specifically, some participants expressed that they felt burdened by certain inclusions (eg, daily EMAs), whereas others valued these inclusions. Accordingly, we recommend that future versions have optional EMAs, for example, where participants can choose the number of daily EMAs (eg, maximum of 2/day, minimum of 2/week, for instance). We also encourage researchers to use a version of our program to include a measure of MBSC—specifically, the SCS—at each time point, as a way to determine whether mindful self-compassion levels increase following the MBSC intervention.
Other considerations for future iterations of our program include weekly web-based meetings among small groups of participants via breakout rooms, to enhance a sense of community and/or support that was lacking in the current version. These breakout rooms could be moderated by an
As noted in a thematic literature analysis by Rampioni et al [
Our study is one of the first to co-design and deliver an MBSC program for caregivers of persons with dementia using a smartphone. We believe that the findings of this study have demonstrated the feasibility and demand for this type of web-based program and identified the key challenges to be addressed in future studies. Specifically, it is our view that an MBSC program for primary caregivers of persons with dementia, like the one presented in this study, can be particularly helpful for individuals in rural or isolated communities, with limited access to support groups. In addition, this feasibility study has helped identify key outcome variables that were left out of this version (eg, self-compassion), while also enabling us to address intervention elements that can be altered (eg, daily EMAs) or incorporated in the next installment of our intervention (eg, web-based breakout groups to develop both a sense of community among primary caregivers of persons with dementia lacking in the current iteration and to enable participants to ask questions as they progress through the intervention). Our findings will inform the development of future iterations of the MBSC program and will contribute to the evidence on strategies to better support caregivers of persons with dementia.
Alzheimer Society of Saskatchewan
Burden Scale for Family Caregiving
ecological momentary assessment
mindfulness-based self-compassion
Self-Compassion Scale
World Health Organization
The authors gratefully acknowledge the contributions of caregivers of persons with dementia who participated in this study. This study was funded by the Centre for Aging and Brain Health Innovation and the Saskatchewan Health Research Foundation.
None declared.