Persons With Dementia and Their Extended Family Caregivers
NCT ID: NCT04863859
Last Updated: 2025-09-22
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
360 participants
OBSERVATIONAL
2021-09-11
2026-12-31
Brief Summary
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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.
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Detailed Description
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Conditions
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Study Design
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COHORT
CROSS_SECTIONAL
Study Groups
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Grandchildren
Granddaughter or Grandson of the person living with dementia who serves as the primary caregiver
No interventions assigned to this group
Siblings
Brother, sister, brother-in-law or sister-in-law of the person living with dementia who serves as the primary caregiver
No interventions assigned to this group
Nieces/Nephews
Niece or nephew of the person living with dementia who serves as the primary caregiver
No interventions assigned to this group
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
No interventions assigned to this group
Adult Child
Adult child (son or daughter) of the person living with dementia who serves as the primary caregiver
No interventions assigned to this group
Spouse
Spouse (husband or wife) of the person living with dementia who serves as the primary caregiver
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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
* 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
18 Years
ALL
Yes
Sponsors
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National Institute on Aging (NIA)
NIH
Karen Roberto
OTHER
Responsible Party
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Karen Roberto
University Distinguished Professor
Principal Investigators
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Karen A Roberto, PhD
Role: PRINCIPAL_INVESTIGATOR
Virginia Polytechnic Institute and State University
Jyoti Savla, PhD
Role: PRINCIPAL_INVESTIGATOR
Virginia Polytechnic Institute and State University
Locations
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Virginia Polytechnic Institute and State University
Blacksburg, Virginia, United States
Countries
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Central Contacts
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Facility Contacts
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Related Links
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CareEx Study Website
Other Identifiers
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20-742
Identifier Type: -
Identifier Source: org_study_id
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