Understanding the caregiving experiences of extended family members of dementia patients
Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs
This study looks at the experiences of extended family members caring for loved ones with dementia to see how they manage care and what challenges they face.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 360 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Virginia Polytechnic Institute and State University Academic / other |
| Locations | 1 site (Blacksburg, Virginia) |
| Trial ID | NCT04863859 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the caregiving journeys of extended family members who provide care for individuals living with dementia. It focuses on understanding their care management strategies, the use of home and community-based services, and the barriers they face in accessing these services. Through a mixed-methods approach, the study will conduct initial telephone interviews to gather qualitative and quantitative data on caregivers' experiences. The findings will be used to enhance service delivery and improve the quality of life for both dementia patients and their caregivers.
Who should consider this trial
Good fit: Ideal candidates for this study are extended family members, such as grandchildren, siblings, or adult children, who are actively involved in the care of a person living with dementia.
Not a fit: Patients who are caregivers for individuals with mild cognitive impairment or those whose relatives reside in assisted living or nursing homes may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved support services for caregivers, ultimately enhancing the quality of life for both caregivers and dementia patients.
How similar studies have performed: While there have been studies focusing on caregiving for dementia patients, this specific focus on extended family caregivers is relatively novel and has not been extensively tested.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Speaks/reads English * Resident of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentucky or Washington, D.C. * Age 18+ * Is either the grandchild, sibling, niece/nephew, step-kin, adult child or spouse of the person living with dementia * Is providing hands-on care and/or overall management of care for a person living with dementia in the community * Caregiver co-resides with the person with dementia or has face-to-face contact with the person with dementia at least 3 days/week * Has no difficulty talking/hearing on the telephone Exclusion Criteria: * Caregiver of persons with mild cognitive impairment * Person with dementia lives in service-enriched housing such as a continuing care community, or residential facilities, such as assisted living facilities or nursing homes
Where this trial is running
Blacksburg, Virginia
- Virginia Polytechnic Institute and State University — Blacksburg, Virginia, United States (Recruiting)
Study contacts
- Principal investigator: Karen A Roberto, PhD — Virginia Polytechnic Institute and State University
- Study coordinator: Yancey Crawford, MPH
- Email: yanceyc3@vt.edu
- Phone: 540-231-7962
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.