Talking about end-of-life care for people with Alzheimer's and related dementias
LEADing End-of-Life Dementia Care Conversations
This project uses a guided 'LEAD' conversation tool to help people with early-stage Alzheimer's or related dementias and their family caregivers create clear end-of-life care plans.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Utah State Higher Education System--University of Utah NIH-funded |
| Lab location | 1 site (Salt Lake City, United States) |
| Project ID | NIH-11123307 on NIH RePORTER |
What this research studies
If you join, the team will introduce the LEAD Guide, a step-by-step tool designed to help people with early memory problems and their family members talk about values and future medical choices. You and your care partner (for example a spouse or adult child) would work with researchers to walk through the guide and record your wishes while you can still participate in decisions. The focus is on starting these conversations earlier so family decision-makers feel more confident and are more likely to honor your preferences later. The project builds on prior development of the LEAD Guide and applies it with people affected by Alzheimer’s disease and related dementias and their care partners.
Who could benefit from this research
Good fit: Ideal candidates are people with early-stage Alzheimer's disease or related dementias who still have decision-making capacity and their family caregivers (spouses, adult children) willing to discuss advance care planning.
Not a fit: People with advanced dementia who have already lost decisional capacity, or those who do not want to engage in conversations about future care, may not benefit from this project.
Why it matters
Potential benefit: If successful, this work could help families document and follow a person's end-of-life wishes, reduce unwanted medical treatments, and ease decision-making for caregivers.
How similar studies have performed: Advance care planning tools have shown promise in prior work, and the LEAD Guide builds on earlier pilot efforts though it is still being tested in broader groups.
Where this research is happening
Salt Lake City, United States
- Utah State Higher Education System--University of Utah — Salt Lake City, United States (Active)
Researchers
- Principal investigator: Dassel, Kara Bottiggi — Utah State Higher Education System--University of Utah
- Study coordinator: Dassel, Kara Bottiggi
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.