Assessing the impact of day programs on individuals living with dementia and their family/friend caregivers (AIDA-DemCare): protocol of a prospective cohort study combined with a qualitative evaluation.

BACKGROUND

Persons with dementia, their family/friend caregivers, and health systems agree that the preferred place of dementia care is a person's home. Health systems have struggled to provide sufficient community-based dementia care supports, negatively affecting the health and well-being of persons with dementia and their caregivers. Therefore, dementia care and support of dementia caregivers are critical public health priorities. Adult day programs aim to simultaneously support the health and well-being of persons with dementia and their caregivers, but research focusing on these day program outcomes is lacking. The primary objective of this study was to compare various outcomes of day program attendees with dementia and their caregivers over time to outcomes of non-attendees with dementia in the community (with care needs similar to those of attendees) and their caregivers.

METHODS

In each of four Canadian health regions (York Region, Ontario; Interior Health, British Columbia; Calgary, Alberta; Winnipeg, Manitoba), this study will recruit 250 day program attendees with dementia and their caregivers, and 500 community-based non-attendees with dementia and their caregivers. Applying criteria used by the health system to determine day program eligibility, we will identify non-attendees with care needs similar to those of attendees. We will combine participants' longitudinal health administrative data with repeated (baseline, 1-year, and 2-year follow-up) surveys to include variables not routinely collected by healthcare systems. Primary study outcomes are quality of life of the person with dementia and their caregiver. Secondary study outcomes include mental health (older adults, caregivers), cognitive and physical decline (older adults), time to admission to congregate care (older adults), and emergency room, hospital, and primary care use (older adults, caregivers). Using a day program survey, we will also assess day program characteristics. Using covariate-adjusted general estimating equations and time-to-event models, we will compare these outcomes between groups of day program exposure (no, low, medium, high).

DISCUSSION

Persons living with dementia, their caregivers, and health systems urgently need solutions to support living at home with a good quality of life. This study will generate provide evidence on the potential of day programs to address these critical public healt needs.

TRIAL REGISTRATION

ClinicalTrials.gov: NCT06496945.