Toolkit to help family caregivers spot and talk about pain in loved ones with dementia

The Pain Identification and Communication Toolkit: A Training Program to Support Family Caregivers of Persons with ADRD

NIH-funded research Weill Medical Coll of Cornell Univ · NIH-11304477

This project teaches family caregivers of people with Alzheimer's and related dementias how to recognize pain and communicate it to clinicians.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionWeill Medical Coll of Cornell Univ NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11304477 on NIH RePORTER

What this research studies

If my loved one has dementia, this program trains family caregivers to notice signs of pain when words are no longer reliable. Caregivers learn a brief observational pain tool, receive coaching on how to talk with healthcare providers about pain, and practice skills through routine exercises. The program is manualized and delivered by a multidisciplinary team with experience in dementia and pain. Participation is expected to include training sessions and using the toolkit during everyday care.

Who could benefit from this research

Good fit: Ideal participants are family caregivers of older adults with Alzheimer’s disease or related dementias who have difficulty verbally reporting pain.

Not a fit: People who manage their own pain, have mild cognitive impairment with reliable self-report, or lack an involved family caregiver may not benefit from this caregiver-focused approach.

Why it matters

Potential benefit: If successful, this could help caregivers identify and report pain earlier so people with dementia receive more timely and appropriate pain treatment.

How similar studies have performed: Early pilot work by the team showed the approach is feasible and promising for improving caregiver skills, but larger trials are needed to confirm clinical benefits.

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.
Conditions Alzheimer's Disease and its related dementiasAlzheimer's disease and related dementiaAlzheimer's disease and related disordersAlzheimer's disease and related forms of dementiaAlzheimer's disease or a related dementia
Last reviewed 2026-06-10 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.