JMIR Publications

ABSTRACT

Background:

Alzheimer's disease (AD) is a degenerative neurological condition that requires long-term care. The cost of these responsibilities is often borne by informal caregivers, who experience an elevated risk of negative physical and psychological outcomes. Previously, we designed a positive emotion regulation intervention that was shown to improve well-being among dementia caregivers when delivered through one-on-one videoconferencing lessons with a trained facilitator. However, the format required significant resources in terms of logistics and facilitator time. To broaden the reach of the intervention, we aim to develop SAGE LEAF, an iteration of the intervention in a self-guided, online format with enhanced opportunities for social connection.

Objective:

The aim of the present study was to gather feedback to inform the design of social features for the SAGE LEAF intervention. In the absence of a facilitator, our goal with the self-guided SAGE LEAF was to integrate various social features (e.g. discussion board, automated support, profiles, etc.) to maximize engagement among participants.

Methods:

Qualitative data were collected from 26 individuals through 1) interviews with participants who completed a previous version of the intervention via videoconferencing with a facilitator, 2) focus groups with dementia caregivers who had not previously experienced the intervention, and 3) focus groups with AD clinical care providers. We conducted a qualitative, thematic analysis to identify which social features would be most helpful and how they could be implemented in a way that would be best received by caregivers.

Results:

Interview and focus group feedback indicated participants generally liked the potential features suggested in the interviews and focus groups, including the discussion boards, multimedia content, and informational support. They had valuable suggestions for optimal implementation. For example, participants liked the idea of a buddy system where caregivers would be matched up with another for the duration of the study. However, they expressed concern about differing expectations among caregivers and the possibility of matched caregivers not getting along. Participants also expressed interest in giving caregivers access to a podcast on the skills, which would allow them to review additional content when they wished.

Conclusions:

Taken together, the discussions with caregivers and providers offered unique insight into the types of social features that may be integrated into the SAGE LEAF intervention, as well as implementation suggestions to improve acceptability of the features among caregivers. These insights will allow us to design social features for the intervention that are optimally engaging and helpful for caregivers.