Helping family caregivers of dementia patients manage stress and pain

Supporting Family Caregivers of Persons With Dementia

Not applicable Interventional University of Pennsylvania · NCT05336344

This study is testing a new program to see if it can help family caregivers of dementia patients manage their stress and pain better while providing care.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment412 (estimated)
Ages18 Years and up
SexAll
SponsorUniversity of Pennsylvania Academic / other
Locations1 site (Philadelphia, Pennsylvania)
Trial IDNCT05336344 on ClinicalTrials.gov

What this trial studies

This clinical trial aims to support family caregivers of patients with Alzheimer's Disease and Related Dementias (ADRD) by implementing a cognitive behavioral intervention called ENCODE. Caregivers will be randomly assigned to either receive standard hospice care with additional social support through video calls or to participate in the ENCODE intervention designed to help them address pain management challenges. The study will evaluate the effectiveness of this intervention over a five-year period, focusing on reducing caregiver stress and improving their ability to communicate care needs. The trial is based on previous findings highlighting the challenges faced by caregivers in managing pain for dementia patients.

Who should consider this trial

Good fit: Ideal candidates are family caregivers of hospice patients diagnosed with Alzheimer's disease or related dementias who have concerns about managing their care recipient's pain.

Not a fit: Patients who are not family caregivers or those without significant concerns about pain management may not benefit from this study.

Why it matters

Potential benefit: If successful, this intervention could significantly reduce caregiver stress and improve the quality of care for patients with dementia.

How similar studies have performed: Previous studies have shown mixed results regarding caregiver interventions, but this specific approach using the ENCODE model is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* enrolled as a family/informal caregiver of a hospice patient with primary or secondary diagnosis of Alzheimer's disease or other related dementia
* responding with "yes" to the question about having any concerns about effectively managing their care recipient's pain
* 18 years or older
* no or only mild cognitive impairment
* speak and read English, with at least a 6th-grade education

Exclusion Criteria:

* Significant hearing loss that does not allow the participant to conduct telephone conversations as assessed by the research staff (by questioning and observing the caregiver)

Where this trial is running

Philadelphia, Pennsylvania

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Caregiver Stress SyndromeAnxietyDepression
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.