JMIR Publications

ABSTRACT

Background:

As the number of persons with dementia (PWD) continues to grow worldwide, so too does the number of individuals supporting PWD. Primary caregivers of persons with dementia (CGPWD) are most often family members or spouses of the PWD, who are more likely to experience increased stress and other negative effects (e.g., depression, anxiety, decreased well-being) linked to their caregiving responsibilities than individuals who are not primary CGPWD. While in-person support groups and/or interventions have been shown to help buffer the negative impacts of caregiving, some CGPWDs may be unable to participate in these established programs due to long travel distances, caregiving commitments, or their own health issues. We developed a program for CGPWD to be delivered via a mobile smartphone support app, with a goal of reducing caregiver burden and easing the stress involved with caregiving responsibilities. The program features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), since MBSC has been linked to minimizing stress, depression and anxiety.

Objective:

The primary objectives of program were twofold: 1) to explore the feasibility of a 12-week mobile support program, and 2) to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers prior to and following the program.

Methods:

Our feasibility study employed a two-phase, participatory pre-test, post-test design, focused on acceptability, practicality, implementation, and efficacy. At Phase I, we recruited 57 primary CGPWD (Mage = 76.3 years; SDage = 12.9), representing spouses (36.2%), children (36.2), and friends/relatives (27.6%) of PWD, of whom 29 (50.8%) completed all measures at both pre and post program. 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. As well, there were daily ecological momentary assessments (EMAs), which enabled us to ask participants “How are you feeling today?”. Phase II of our study involved a semi-structured follow-up interview of the majority of participants (n = 21) who completed Phase I.

Results:

Our findings suggest that our program met the feasibility criteria that were examined. Participants generally accepted the program and believed it could be/was a useful resource. Emotional well-being increased significantly (P = .04) and emotion-based coping significantly decreased (P = .01). Participants generally considered the program to be a helpful resource.

Conclusions:

This program was found to be feasible (acceptable, practical, implementation, and potentially efficacious) for CGPWD, and provides the basis for future testing and deployment of a much-needed resource for CGPWD. We are encouraged by the findings of this feasibility study, which demonstrated increased emotional well-being of our participants following their completion of our program.