Promoting Self-Care and Coping for Alzheimer's Caregivers

Project Summary Abstract An estimated million adults in the United States currently provide informal care to relatives and friends with Alzheimer s disease The economic contribution of informal caregivers service is estimated in the billions and is the cornerstone of care for the million people with the disease While informal caregivers undoubtedly perform an important role the responsibilities are challenging and potentially impact caregivers own health and quality of life Compared with caregivers of people without dementia twice as many caregivers of people with dementia indicate substantial emotional and physical difficulties and have higher rates of depressed mood cardiovascular disease and reduced immune functioning There is therefore a need to alleviate stress and enable caregivers to better cope with the demands and take care of their own health and wellbeing Interventions have been developed to assist caregivers however there exist limited programs on coping and self care accessible to Alzheimer s caregivers outside of clinic settings Web based services have the advantage of flexibility in access scalability in scope and tailoring of individual training needs The purpose of this project will be to develop an interactive web based stress and coping program reflective of the stages and unique challenges of caring for someone with Alzheimer s disease and consistent with the literature on protective mechanisms The program will focus on self care and coping skills and will be designed to improve psychological wellbeing physical health and promote positive coping ISA Associates in partnership with a team of expert consultants and the Redmon Group will develop and pilot test the prototype during Phase I of the project The primary objectives of Phase I are to lay the groundwork for developing a product capable of addressing the personal care needs of Alzheimer s caregivers determine the technology that is best suited for helping caregivers and conduct an analysis and test of the program to promote our scientific understanding of caregivers needs and best practices To accomplish these objectives ISA will build on its extensive experience in developing health related interventions most notably the Breathe stress management program the Healthy Past Program and the Caregiver SmartTools Program In Phase I ISA will conduct pre development focus groups to determine the content and technical needs of program users ISA will work with experts in the fields of gerontology and social work to create a science driven and functionally relevant program Following these activities project staff will develop the prototype for the program fully developing the Introduction Assessment Feedback and Module during Phase I and developing the structure for the Phase II modules A review of the prototype and a comparison website will be conducted with participants rating the two websites to determine the feasibility of the program in meeting program goals If the prototype program passes these established feasibility criteria it will be fully developed tested in an experimental field design and prepared for marketing during Phase II Project Narrative This project aims to develop a web based program focusing on promoting self care and coping among informal caregivers of a relative with Alzheimer s The program will deliver custom information to users following an assessment of their stage of caregiving and current stressors The program will be designed to provide users with the information skills and tools needed to promote their own health and wellbeing Materials will be multi modal in format e g narration visuals graphics interactive assessments with feedback and tailoring of information It will also incorporate a responsive web design allowing access from a range of personal devices The goal of the program will be to promote active coping and reduce the incidence of negative health consequences experienced by many caregivers Upon successful development and testing of the program a broad based commercialization plan will be initiated Markets for the program include workplaces large insurers managed behavioral health organizations and providers of services to informal caregivers