The objective of the proposed project is to test the feasibility of a free online care coordination tool for family caregivers of persons with Alzheimer's disease or a related dementia (ADRD). [Specifically, this proposal uses a multi-phase mixed methods design (QUAN+QUAL?QUAL) to: 1) test the Personal Health Record for Persons with Alzheimer's Disease and Related Dementias and Their Family Caregivers (PHR- ADRD)'s feasibility] on a sample of 50 ADRD caregivers;2) conduct a longitudinal, descriptive analysis of change in self-efficacy, primary care provider interactions, and subjective stress over a 1-year period;and 3) purposively sample 20 caregivers from the sample who indicate the greatest positive empirical changes (n = 10) and negative changes (n = 10) in self-efficacy, primary care provider interactions, and subjective stress over 12 months to conduct semi-structured interviews that determine how and why PHR-ADRD use was helpful or not in enhancing these outcomes.] It is anticipated that the PHR-ADRD (which relies on the Microsoft Health Vault"""""""" platform) will provide a powerful care coordination tool that has heretofore not received attention as a clinical option for ADRD caregivers. [Such findings will facilitate the development of a treatment manual and provide a strong foundation for a multi-year initiative to evaluate the efficacy of the PHR- ADRD across multiple states and regions in the United States.]
The evidence base of dementia caregiver intervention efficacy has expanded. However, there remains little guidance for families as to how to coordinate available information on Alzheimer's disease or related dementias to best meet the needs of their individual care situations. The proposed project aims to fill this gap between scientific inquiry and person-centered utility by [determining the feasibility of] an online care coordination tool, the Personal Health Record for Persons with Alzheimer's Disease or a Related Dementia and Their Family Caregivers (PHR-ADRD). It is anticipated that the PHR-ADRD will assist caregivers coordinate care during the course of dementia, a disease trajectory which remains fraught with potentially disruptive care transitions (e.g., onset, disability, institutionalization, etc.), unanswered questions, and ill- informed care decisions.
