Persons With Dementia and Their Extended Family Caregivers

Part of paid clinical trials in Blacksburg, Virginia.

Sponsor
Karen Roberto
Study ID
NCT04863859
Status
Recruiting
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Conditions

  • Dementia
  • Dementia Alzheimers
  • Dementia Severe
  • Dementia of Alzheimer Type
  • Neuro-Degenerative Disease

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Accepted

Study Details

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.

Key Dates

Start date
Sep 11, 2021
Status verified
Sep 2025
Primary completion
May 30, 2026
Completion
Dec 31, 2026

Study Design

Enrollment
360 participants (estimated)

Arms

  • Arm: Grandchildren
    Granddaughter or Grandson of the person living with dementia who serves as the primary caregiver
  • Arm: Siblings
    Brother, sister, brother-in-law or sister-in-law of the person living with dementia who serves as the primary caregiver
  • Arm: Nieces/Nephews
    Niece or nephew of the person living with dementia who serves as the primary caregiver
  • Arm: 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
  • Arm: Adult Child
    Adult child (son or daughter) of the person living with dementia who serves as the primary caregiver
  • Arm: Spouse
    Spouse (husband or wife) of the person living with dementia who serves as the primary caregiver

Primary Outcome Measure

Change in Well-Being of Person Living with Dementia [ Time Frame: Day 1 to Day 8 ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Virginia Polytechnic Institute and State UniversityBlacksburgVirginia24061
Yancey Crawford, MPH
[email protected]
540-231-7962
Brandy McCann, PhD
[email protected]

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Virginia Polytechnic Institute and State University· Blacksburg, VA

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