Supporting Family Caregivers of Persons With Dementia

Launched by UNIVERSITY OF PENNSYLVANIA · Apr 12, 2022

Keywords

ClinConnect Summary

This clinical trial is studying how to better support family caregivers who take care of loved ones with dementia, such as Alzheimer's disease. The research team has developed a program called ENCODE (Empowering Caregivers of Patients with Dementia) to help caregivers express and manage their concerns about pain management for their family members. In this trial, caregivers will be divided into two groups: one will receive regular hospice care along with friendly video calls for social support, while the other will receive the same hospice care plus the ENCODE program to help them communicate their needs more effectively.

To participate in this study, caregivers must be at least 18 years old and be providing care for a hospice patient with dementia. They should have some concerns about managing their loved one's pain and be able to speak and read English. Participants will be actively recruited for this study, and it aims to last for five years. By joining, caregivers can expect to gain valuable tools and support to help them in their caregiving journey while also contributing to important research that may improve care for others in similar situations.

Gender

ALL

Eligibility 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)