E-mobile support for community-based dementia caregivers: A proof of concept phase 1

Abstract

Purpose: Dementia and the isolation it produces impose 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. Watching video-recorded patient stories on DVD has improved blood pressure for new patients with hypertension 1. Multiple websites offer digital storytelling to persons with diabetes 2,3. Telephone support groups and multimedia interventions are well-regarded 4,5. A national ADEAR/NLM trial on a Psychosocial Telephone Intervention for Dementia Caregivers offers caregivers 16 phone calls over 6 months from a researcher who offers support 6. Combining new technologies with culturally-sensitive social support is powerful, since smart phone ownership is higher among African-Americans and Latinos than among Caucasians 7. Method: Story-Call is our newly-developed mobile phone application that records, archives, and presents 30/60-second videos by caregivers (CG) 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 5 consented female working CGs recruited from adult day care centers could use the App prototype with minimal instructions to successfully record stories; pre- and post-intervention testing with the Zarit Burden Scale and Kaye's Gain Through Group Involvement scale examined perceived burden and willingness to seek social support. Results & Discussion: The minimal directions enabled 4 working Anglo female caregivers to easily access the mobile App, to record CG success stories, and to view others' stories. One CG accessed it easily but, nervous about being photographed, withdrew. Pre-/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; Phase 2 will work to recruit diverse men and women CG from a larger geographic region and seek both isolated rural and minority CG, particularly working CG.