RECRUITING

Persons With Dementia and Their Extended Family Caregivers

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2021-09-11
Study Completion:2026-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04863859

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Speaks/reads English
  2. * Resident of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentucky or Washington, D.C.
  3. * Age 18+
  4. * Is either the grandchild, sibling, niece/nephew, step-kin, adult child or spouse of the person living with dementia
  5. * Is providing hands-on care and/or overall management of care for a person living with dementia in the community
  6. * Caregiver co-resides with the person with dementia or has face-to-face contact with the person with dementia at least 3 days/week
  7. * Has no difficulty talking/hearing on the telephone
  1. * Caregiver of persons with mild cognitive impairment
  2. * 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

Contacts and Locations

Study Contact

Yancey Crawford, MPH
CONTACT
540-231-7962
yanceyc3@vt.edu
Brandy McCann, PhD
CONTACT
bmccann@vt.edu

Principal Investigator

Karen A Roberto, PhD
PRINCIPAL_INVESTIGATOR
Virginia Polytechnic Institute and State University
Jyoti Savla, PhD
PRINCIPAL_INVESTIGATOR
Virginia Polytechnic Institute and State University

Study Locations (Sites)

Virginia Polytechnic Institute and State University
Blacksburg, Virginia, 24061
United States

Collaborators and Investigators

Sponsor: Karen Roberto

  • Karen A Roberto, PhD, PRINCIPAL_INVESTIGATOR, Virginia Polytechnic Institute and State University
  • Jyoti Savla, PhD, PRINCIPAL_INVESTIGATOR, Virginia Polytechnic Institute and State University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2021-09-11
Study Completion Date2026-12

Study Record Updates

Study Start Date2021-09-11
Study Completion Date2026-12

Terms related to this study

Keywords Provided by Researchers

  • caregiving, persons living with dementia, community-based services

Additional Relevant MeSH Terms

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