Trials / Recruiting
RecruitingNCT04863859
Persons With Dementia and Their Extended Family Caregivers
Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs
- Status
- Recruiting
- Phase
- —
- Study type
- Observational
- Enrollment
- 360 (estimated)
- Sponsor
- Karen Roberto · Academic / Other
- Sex
- All
- Age
- 18 Years
- Healthy volunteers
- Accepted
Summary
Immediate family members shoulder the majority of care responsibilities for persons living with dementia. However, due to various societal changes, elder care responsibilities have expanded to extended family members, including grandchildren, siblings, nieces/nephews, siblings, and step-kin. The main objective of this study is to understand the caregiving journeys of various extended family members involved in dementia care. We aim to learn about caregivers' care management strategies; their use of home and community-based services and informal support; and barriers to service usage. We will use the results from the study to help enhance service delivery, alleviate care-related stress, and improve the quality of life of dementia patients and their caregivers. We will use a mixed-methods design to explore the challenges faced by caregivers as well as their service usage for the person living with dementia. Our methodology involves an initial telephone interview (approx. 70 minutes) that includes open-ended questions, standard items, and structured measures, followed by an 8-day semi-structured daily diary interview about daily care responsibilities and experiences with services (15-20 minutes each evening). This study will be conducted with 240 extended family members serving as one of the main caregivers for a person living with dementia in a community setting.
Conditions
Timeline
- Start date
- 2021-09-11
- Primary completion
- 2026-05-30
- Completion
- 2026-12-01
- First posted
- 2021-04-28
- Last updated
- 2025-09-22
Locations
1 site across 1 country: United States
Source: ClinicalTrials.gov record NCT04863859. Inclusion in this directory is not an endorsement.