Improving advance care planning for patients with Alzheimer's and related dementias by involving their families

Involving Family to Improve Advance Care Planning for Primary Care Patients with ADRD

NIH-funded research Johns Hopkins University · NIH-10651679

This study is looking to help families of people with Alzheimer's and related dementias by creating a friendly way for them to talk about care decisions together, making sure that everyone's wishes are heard and respected.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionJohns Hopkins University NIH-funded
Lab location1 site (Baltimore, United States)
Project IDNIH-10651679 on NIH RePORTER

What this research studies

This research focuses on enhancing advance care planning for patients with Alzheimer's Disease and Related Dementias (ADRD) by actively involving their family caregivers. The study aims to develop a communication intervention called SHARE, which will include strategies such as introductory letters from primary care practices and agenda-setting discussions to align patient and family perspectives. By engaging families in these conversations, the research seeks to improve decision-making and ensure that patients' values and preferences are respected in their care. The intervention will be tested in primary care settings, where many patients with ADRD are first diagnosed and managed.

Who could benefit from this research

Good fit: Ideal candidates for this research are adults aged 21 and older who have been diagnosed with Alzheimer's Disease or related dementias.

Not a fit: Patients who do not have Alzheimer's Disease or related dementias, or those who are not involved in their care decisions, may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could lead to better end-of-life care for patients with ADRD by ensuring their wishes are communicated and respected.

How similar studies have performed: Previous research has shown that involving family members in advance care planning can improve communication and decision-making for patients with serious health conditions.

Where this research is happening

Baltimore, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.