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

Institutions

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
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Sara Bybee, Katherine Supiano, Rebecca Utz, Kara Bottiggi Dassel et al.
1 citations
American Journal of Hospice and Palliative Medicine®
Palliative Care and End-of-Life Issues
1.88
article

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

Sara Bybee, Katherine Supiano, Rebecca Utz, Kara Bottiggi Dassel, Nancy Aruscavage, Sharon E. Bigger, Eli Iacob, Jordana L Clayton
article en
1 citations

Abstract

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.

American Journal of Hospice and Palliative Medicine®
University of Utah (US)
Openalex Percentile: Top 12%
Palliative Care and End-of-Life Issues
1.88
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.