This research focuses on the experiences of extended family caregivers (i.e., grandchildren, siblings, nieces/nephews, step-kin) with home and community-based services to assist with the care of older relatives living with dementia.
What is this study about?
The specific aim for this project is to learn about different relational types of extended family members’ (i.e., grandchildren, siblings, nieces/nephews, step-kin as compared to spouses and adult children) paths to dementia caregiving, how they manage their care responsibilities, what home and community-based services and informal support they use to meet the needs of the person with dementia, and the resultant effects on the person with dementia and their own well-being.
What’s involved?
A telephone interview that includes open-ended questions and standard items and structured measures, followed by a semi-structured 8-day diary interview focused on the daily experiences with HCBS, will be administered to extended family members who serve as the primary caregivers of a PLwD living in the community (i.e., non-residential settings).
Who can participate?
An individual may be able to take part in the study if they are:
- Is either the grandchild, sibling, niece/nephew, or step-kin of the person living with dementia
- Caregiver co-resides with the person with dementia or provides help to the person with dementia at least 3 days/week
- Residents of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentucky, or Washington, D.C.
Study Funder/Sponsor
National Institute of Aging (NIA)
For more information, please email careex@vt.edu, call Brandy McCann @ 540-231-9250, or indicate your interest in hearing from the study team using the following link: careex.isce.vt.edu