Supporting Family Caregivers of Persons With Dementia

Completed · Not applicable

Conditions studied: Caregiver Stress Syndrome, Anxiety, Depression

In brief

Based on preliminary work, whereby investigators examined pain management challenges and needs of caregivers of hospice patients with dementia, this team designed a cognitive behavioral intervention informed by the relational model of stress, entitled ENCODE (Empowering Caregivers of Patients with Dementia) to assist caregivers in effectively identifying and communicating their pain management challenges and needs. The investigators propose a 5-year randomized clinical trial in which caregivers of patients with Alzheimer's Disease and Related Dementias (ADRD) will be randomly assigned to a group receiving standard hospice care with the addition of "friendly video-calls" providing social support (attention control group) or a group receiving standard hospice care with the addition of the ENCODE intervention (intervention group).

Key facts

Study ID

NCT05336344

Run by

University of Pennsylvania

People needed

452

Starts

2022-07-15

Expected to finish

2026-04-10

Last updated by the study team

2026-04-21

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• 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

You may not qualify if…

• 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 it is running

• University of Pennsylvania — Philadelphia, Pennsylvania, United States

Full record on ClinicalTrials.gov

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