Actively Recruiting
Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs
Led by Karen Roberto · Updated on 2025-09-22
360
Participants Needed
1
Research Sites
26 weeks
Total Duration
On this page
Sponsors
K
Karen Roberto
Lead Sponsor
N
National Institute on Aging (NIA)
Collaborating Sponsor
AI-Summary
What this Trial Is About
This research aims to understand the caregiving experiences of extended family members who provide care for people living with dementia. The study focuses on learning about caregivers' strategies for managing care, their use of home and community services, informal support, and obstacles they face in accessing these services. The goal is to improve service delivery, reduce caregiver stress, and enhance the quality of life for both dementia patients and their caregivers. Participants include extended family caregivers such as grandchildren, siblings, nieces/nephews, step-kin, adult children, or spouses of persons with dementia. The study uses a mixed-methods approach, starting with a telephone interview lasting about 70 minutes that covers open-ended questions, standard items, and structured measures. This is followed by an 8-day period where participants complete daily semi-structured diary interviews lasting 15-20 minutes each evening to report on daily care responsibilities and service experiences. During the study, researchers will assess changes in the well-being of the person living with dementia from day 1 to day 8, along with caregiver well-being measures including role overload, role captivity, work strain, and daily psychological distress. Participants will be monitored through interviews and diaries over the 8-day period. This observational study involves 240 extended family caregivers providing care in community settings, with no intervention treatments involved.
CONDITIONS
Brief Title
Persons With Dementia and Their Extended Family Caregivers
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Speaks and reads English
- Resident of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentucky, or Washington, D.C.
- Age 18 years or older
- Is a grandchild, sibling, niece/nephew, step-kin, adult child, or spouse of a person living with dementia
- Provides hands-on care or overall management of care for a person living with dementia in the community
- Co-resides with or has face-to-face contact with the person living with dementia at least 3 days per week
- Has no difficulty talking or hearing on the telephone
You will not qualify if you...
- Caregiver of persons with mild cognitive impairment
- Person with dementia lives in service-enriched housing such as a continuing care community
- Person with dementia lives in residential facilities such as assisted living or nursing homes
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - 8 days
Participants who are family caregivers of persons living with dementia are observed to assess well-being and psychological distress over time.
Assessments on Day 1 and Day 8
Trial Site Locations
Total: 1 location
1
Virginia Polytechnic Institute and State University
Blacksburg, Virginia, United States, 24061
Actively Recruiting
Research Team
Y
Yancey Crawford, MPH
B
Brandy McCann, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
6
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