Anticipated Impact for Veterans: Alzheimer's disease and the isolation it produces imposes a heavy burden on informal caregivers (CG) of Veterans who are persons with dementia (PWD); caregiver research indicates that dementia CG carry greater burden than for other chronic diseases. The proposed Story-Call intervention will deliver personalized problem-solving support in the form of story-telling to expand the reach of VA support resources via a mobile phone application (APP) to caregivers of community-dwelling Veterans who are PWD. The expected outcomes will examine if CGs find that the APP-recorded stories decrease perceived CG burden and increase social support as efficacy, while confirming feasibility in recruitment, acceptability, practicality, increased adaptation to dementia care, and use of community resources. Background: Support programs promoting CG involvement can significantly delay Veteran institutionalization as can increased community engagement and early use of community-based services. Interventions reducing CG stress and other burdens can increase CG quality of life and can decrease costs of the disease. However, not all CG reach out to community and nationally-available resources, keyed to issues of work, time, culture, or rurality. Mobile technology allows providers to reach people who may be isolated and need social support. Project Objectives:
Aim 1 : Quantitative: In a feasibilty study of a randomized controlled trial, assign two cohorts to use the APP to record and rate stories, complete validated pre-/post-tests, and select from the APP's expanded responses [cases (n=40)] or to receive Internet-delivered informational materials including short vignettes and a follow-up phone call [control (n=40)] to measure differences in CG burden as a primary outcome, and involvement, social support, dementia knowledge, and satisfaction with APP use for trends.
Aim 2 : Qualitative: Using constructivist grounded theory, categorize themes from stories and in 2 phases collect: 1) perceptions from follow-up phone interviews with CG participants; and 2) focus groups with Advisory Group and VA stakeholders as a process evaluation of APP appeal, use, impact, and cultural tailoring.
Aim 3 : Mixed Methods Analysis: In the tradition of a fully integrated mixed methods study, integrate the parallel quantitative and qualitative findings to evaluate the potential feasibility elements of acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy of Story-Call in its potential to improve CG burden and suggest directions for a future randomized controlled trial across the VISN Methods: Our initially-targeted audience consists of working caregivers, particularly minority and rural caregivers, who may have less time and opportunity for more traditional, scheduled group support and teaching interventions. Using a wait-listed, within/between subjects pre-/post-design, this proposed mixed methods study will use the mobile APP to enhance the well-being of all VA CG, particularly minority working CG. It is expected to decrease perceived CG burden, increase use of community services, and potentially decrease CG costs through delay in institutionalization. Building on story-telling interventions effective in other chronic diseases, his feasibilty study proposes Story-Call as a newly-developed mobile phone application that records, archives, and presents 30/60-second videos by caregivers and professionals, who share brief stories about how they have handled common dementia home-care situations, such as She wants to go home! In preliminary data, our successful proof-of-concept study of the technology demonstrated that brief training enabled four working CG to access our application on the mobile phone, to record their own success stories about caring for a spouse/parent, to view and rate others' stories and to offer additional responses as a way to decrease CG burden and enhance CG well-being. Brief interviews and test scores identified high satisfaction with the APP intervention, and suggested that measuring outcomes via the APP for caregiver burden will be possible. We propose this feasibility study to establish the basis for future testing and implementation.
The proposed project, Story-Call: e-mobile support for community dementia caregivers, will deliver personalized story-telling support and resources via a mobile phone application (APP) to caregivers (CG) of community-dwelling Veterans with dementia. Our initially-targeted audience consists of working caregivers, particularly minority caregivers. This proposed mixed methods study using a crossover design will use the mobile APP to enhance the wellbeing of working CG by decreasing their perceived CG burden, increasing their use of community resources and services, and potentially decreasing CG costs through delay in institutionalization.
