Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs

Status: Recruiting
Location: See location...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: t
View:

• 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

Locations
United States
Virginia
Virginia Polytechnic Institute and State University
RECRUITING
Blacksburg
Contact Information
Primary
Yancey Crawford, MPH
yanceyc3@vt.edu
540-231-7962
Backup
Brandy McCann, PhD
bmccann@vt.edu
Time Frame
Start Date: 2021-09-11
Estimated Completion Date: 2026-12
Participants
Target number of participants: 360
Treatments
Grandchildren
Granddaughter or Grandson of the person living with dementia who serves as the primary caregiver
Siblings
Brother, sister, brother-in-law or sister-in-law of the person living with dementia who serves as the primary caregiver
Nieces/Nephews
Niece or nephew of the person living with dementia who serves as the primary caregiver
Step-Kin
Step-kin (step-daughter, step-son, step-sister, step-brother or other step-kin) of the person living with dementia who serves as the primary caregiver
Adult Child
Adult child (son or daughter) of the person living with dementia who serves as the primary caregiver
Spouse
Spouse (husband or wife) of the person living with dementia who serves as the primary caregiver
Related Therapeutic Areas
Sponsors
Collaborators: National Institute on Aging (NIA)
Leads: Karen Roberto

This content was sourced from clinicaltrials.gov