Helping family caregivers spot and manage pain in loved ones with dementia
Supporting Family Caregivers of Persons with Dementia
This project tries a coaching program to help family caregivers of people with Alzheimer's disease or related dementias spot and manage their loved ones' pain.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Pennsylvania NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project ID | NIH-11249984 on NIH RePORTER |
What this research studies
You would join a five-year randomized trial for caregivers of people with Alzheimer's disease or related dementias. Caregivers are randomly assigned to receive routine care plus regular friendly calls or routine care plus the ENCODE behavioral coaching program that teaches how to identify, communicate about, and address pain. The study team will collect information about how caregivers recognize pain, communicate with clinicians, and how pain is managed for the person with dementia. Much of the support can be delivered remotely and caregivers are followed over time to see whether ENCODE improves pain care and caregiver wellbeing.
Who could benefit from this research
Good fit: Ideal candidates are adult family or informal caregivers who provide regular care to a person with Alzheimer's disease or a related dementia, especially when the care recipient has suspected or known pain or difficulty communicating.
Not a fit: The intervention may be less relevant for paid professional caregivers, caregivers of people without pain or those who can clearly report pain themselves, or individuals unwilling to take part in coaching calls.
Why it matters
Potential benefit: If successful, caregivers could gain practical skills that improve pain detection and treatment for people with dementia and reduce caregiver stress.
How similar studies have performed: Preliminary work by the team identified caregiver pain-management needs and informed the ENCODE program, but this larger randomized trial is needed to confirm its effectiveness.
Where this research is happening
Philadelphia, United States
- University of Pennsylvania — Philadelphia, United States (Active)
Researchers
- Principal investigator: Demiris, George — University of Pennsylvania
- Study coordinator: Demiris, George
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.