Exploring the Feasibility of the LEAD Trial: Online Dyadic Dementia Care Planning for Early Alzheimer's and Other Dementias
ObjectivesPeople 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 (<u>L</u>ife-Planning in <u>E</u>arly <u>A</u>lzheimer's and Other <u>D</u>ementias), 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.MethodsCommunity-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.ResultsSixty-four percent of dyads completed the intervention. There was a significant increase in decision-making self-efficacy scores among care recipients and care partners (<i>P</i> < .001) and a decrease in relationship strain among care partners (<i>P</i> < .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.DiscussionOur 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.
Authors
- Sara Bybee (ORCID: https://orcid.org/0000-0001-5878-6593)
- Katherine Supiano (ORCID: https://orcid.org/0000-0001-7267-7705)
- Rebecca Utz (ORCID: https://orcid.org/0000-0001-7734-7676)
- Kara Bottiggi Dassel (ORCID: https://orcid.org/0000-0001-8236-9693)
- Nancy Aruscavage
- Sharon E. Bigger (ORCID: https://orcid.org/0000-0001-6859-6697)
- Eli Iacob (ORCID: https://orcid.org/0000-0003-1617-0314)
- Jordana L Clayton (ORCID: https://orcid.org/0009-0002-5014-9164)
Institutions
- University of Utah (US)
Publication Details
- Journal
- American Journal of Hospice and Palliative Medicine®
- Published
- 2025-09-19
- DOI
- https://doi.org/10.1177/10499091251379840
- Citations
- 1
- Primary Topic
- Palliative Care and End-of-Life Issues
- Type
- article
- Field-Weighted Citation Impact
- 1.88