JMIR Publications

ABSTRACT

Background:

Managing the complex and long-term care needs of persons living with Alzheimer's disease and related dementias (ADRD) can adversely impact the health of informal caregivers as well as their care recipients. Online personal health records (PHR) are one way to potentially alleviate caregiver burden by simplifying ADRD healthcare management.

Objective:

The current study evaluated the Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free online information exchange tool, using a multiphase mixed methods approach.

Methods:

Dementia caregivers (N = 34) were surveyed on their well-being and perceptions of PHR-ADRD feasibility and utility at 6- and 12-months using closed and open-ended questions as well as a semi-structured interview (n = 8). Exploratory analyses compared participant characteristics as well as PHR-ADRD use and experiences by overall favorability status.

Results:

Feasibility and utility scores decreased over time, but a subset of participants indicated the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD at all. Qualitative findings suggested technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants.

Conclusions:

Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing healthcare provider buy-in may be essential to the future success of any PHR system.