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Persons With Dementia and Their Extended Family Caregivers

NCT04863859 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 360

Last updated 2025-09-22

No results posted yet for this 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.

Conditions

Sponsors & Collaborators

  • National Institute on Aging (NIA)

    collaborator NIH

  • Karen Roberto

    lead OTHER

Principal Investigators

  • Karen A Roberto, PhD · Virginia Polytechnic Institute and State University

  • Jyoti Savla, PhD · Virginia Polytechnic Institute and State University

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2021-09-11
Primary Completion
2026-05-30
Completion
2026-12-31

Countries

  • United States

Study Locations

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04863859 on ClinicalTrials.gov