Hospice visit patterns for people living with dementia

Hospice Visit Patterns for People with Dementia: Variation, Outcomes, and Policy Considerations

NIH-funded research Icahn School of Medicine at Mount Sinai · NIH-11265783

This project looks at how often and what kinds of hospice visits people with dementia receive and how those visit patterns affect care and policy.

Quick facts

Grant typeP01 program project
Study typeNIH-funded research
Funding institutionIcahn School of Medicine at Mount Sinai NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11265783 on NIH RePORTER

What this research studies

From my perspective as someone affected by dementia, the team will analyze Medicare records to map how often hospice staff visit people with dementia and what services are provided. They will interview family caregivers to learn what day-to-day help (like bathing and toileting) is needed and how hospice responds. The project will link visit patterns to outcomes such as hospital transfers, symptom control, and length of hospice stay, and will study how Medicare payment rules influence service delivery. By combining national data with caregivers' experiences, the goal is to identify changes that could improve hospice support for people with dementia and their families.

Who could benefit from this research

Good fit: Ideal participants are Medicare beneficiaries living with dementia who are enrolled in hospice care, along with their family or unpaid caregivers.

Not a fit: People who are not enrolled in hospice, who do not have dementia, or who receive hospice care outside the Medicare system may not directly benefit from this project.

Why it matters

Potential benefit: If successful, this work could lead to clearer expectations or guidelines for hospice visits and better practical support for people with dementia and their caregivers.

How similar studies have performed: Small qualitative studies have documented caregiver needs for more aide support, but large-scale, policy-focused analyses on hospice visit patterns are relatively new.

Where this research is happening

New York, 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.
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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.