Exploring the Feasibility of the LEAD Trial: Online Dyadic Dementia Care Planning for Early Alzheimer's and Other Dementias

Abstract

Objectives

People with dementia often lose decisional capacity before death, underscoring the need for dementia-focused advance care planning (ACP) tools. In cooperation with our Community Advisory Board, we developed LEAD (Life-Planning in Early Alzheimer’s and Other Dementias), a Web-based, self-guided, dementia-focused ACP intervention for care partners and persons with preclinical or mild dementia. This study evaluated the feasibility and initial efficacy of the LEAD intervention.

Methods

Community-based dyads (N = 48) of one care recipient (person with or at risk for dementia) and one care partner completed the intervention and study surveys assessing decision-making self-efficacy, relationship quality, and medical advance directive completion. We utilized mixed-effects repeated measures models to explore changes in outcome variables over time in care recipients and care partners.

Results

Sixty-four percent of dyads completed the intervention. There was a significant increase in decision-making self-efficacy scores among care recipients and care partners (P < .001) and a decrease in relationship strain among care partners (P < .05). There were no changes in positive relationship domains. Of the 23 dyads that did not have a completed medical advance directive prior to the study, 13 dyads (50.0%) completed this document during the intervention.

Discussion

Our findings suggest the LEAD intervention is feasible and demonstrates initial efficacy in promoting dementia-focused ACP. The LEAD intervention has the potential to reduce relationship strain and help care partners improve their confidence as proxy decision-makers for people with dementia who cannot make independent medical decisions.