E-mobile pilot for community-based dementia caregivers identifies desire for security

Abstract

Purpose Dementia and the isolation it produces imposes a heavy burden on caregivers of persons with dementia as well as caregiver recipients. Mobile technology allows providers to reach people who may be isolated and desire increased social support.Telephone support groups and multimedia interventions are increasingly used for chronic disease management, such as hypertension and diabetes. Method ‘Story-Call’ is our newly-developed mobile phone application (APP) that records, archives, and presents 30- to 60-second videos by caregivers (CGs) who share success stories about how they handle common dementia home-care situations such as “ She wants to go home! ”. Phase 1, a proof-of-concept pilot, tested how well five consented female working CGs recruited from adult day care centers could use the APP prototype with minimal instructions to successfully record stories. The impact of the intervention on perceived burden and willingness to seek social support was examined at pre- and post-intervention testing with the Zarit Burden Scale and Kaye’s Gain Through Group Involvement scale. Results & Discussion The minimal directions enabled four of the five participants to easily access the mobile APP, to record CG success stories, and to view others’ stories. However, a desire for greater anonymity and security was voiced by all five, and one participant withdrew, citing nervousness about being photographed as potentially leading to availability of personal identification. However, post-tests identified high satisfaction with the APP and ease of use, and suggest that measuring outcomes for caregiver burden across a larger group will be feasible. Barriers to recruiting and diversity were identified. Finally, in Phase 2 we will need to work to recruit diverse men and women CGs from a larger geographic region and seek both isolated rural and minority CGs, particularly working CGs.

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