Persons With Dementia and Their Extended Family Caregivers

Last updated: July 12, 2024
Sponsor: Karen Roberto
Overall Status: Active - Recruiting

Phase

N/A

Condition

Dementia

Multiple Sclerosis

Neurologic Disorders

Treatment

N/A

Clinical Study ID

NCT04863859
20-742
R01AG069818
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study 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 Criteria

Inclusion

Inclusion Criteria:

  • Speaks/reads English

  • Resident of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentuckyor Washington, D.C.

  • Age 18+

  • Is either the grandchild, sibling, niece/nephew, step-kin, adult child or spouse ofthe person living with dementia

  • Is providing hands-on care and/or overall management of care for a person livingwith dementia in the community

  • Caregiver co-resides with the person with dementia or has face-to-face contact withthe person with dementia at least 3 days/week

  • Has no difficulty talking/hearing on the telephone

Exclusion

Exclusion Criteria:

  • Caregiver of persons with mild cognitive impairment

  • Person with dementia lives in service-enriched housing such as a continuing carecommunity, or residential facilities, such as assisted living facilities or nursinghomes

Study Design

Total Participants: 360
Study Start date:
September 11, 2021
Estimated Completion Date:
December 31, 2026

Connect with a study center

  • Virginia Polytechnic Institute and State University

    Blacksburg, Virginia 24061
    United States

    Active - Recruiting

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