Clinical trial NCT04863859: Persons With Dementia and Their Extended Family Caregivers
Official title: Persons With Dementia and Their Extended Family Caregivers: Service Use, Barriers and Needs
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Dementia
Dementia Alzheimers
Neuro-Degenerative Disease
Dementia of Alzheimer Type
Dementia Severe
Keywords: caregiving, persons living with dementia, community-based services
Lead sponsor: Virginia Polytechnic Institute and State University
Sponsor class: OTHER
Collaborators: name: National Institute on Aging (NIA)
First posted: 2021-04-28
Enrollment: 360
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: The study population includes extended family caregivers defined as grandchildren, siblings, nieces/nephews and step-kin of persons living with dementia. Caregivers must be as least 18 years of age and primarily responsible for the hands-on care and/or overall management of care for a person living with dementia living in the community. The study will recruit 60 grandchildren, 60 siblings, 60 nieces/nephews and 60 step-kin care givers; in additional 60 adult child and 60 spouse caregivers will be recruited for comparison purposes.

Brief 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 Criteria:

* Speaks/reads English
* 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:

* Caregiver of persons with mild cognitive impairment
* 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

Primary outcomes:
measure: Change in Well-Being of Person Living with Dementia
timeFrame: Day 1 to Day 8
measure: Well-Being of Caregiver: Role overload
timeFrame: Baseline
measure: Well-Being of Caregiver: Role Captivity
timeFrame: Baseline
measure: Well-Being of Caregiver: Work Strain
timeFrame: Baseline
measure: Change in Caregiver Daily Psychological Distress
timeFrame: Day 1 to Day 8
Secondary outcomes:
Other outcomes:
Locations:
city: Blacksburg
country: United States
facility: Virginia Polytechnic Institute and State University
state: Virginia
Study officials:
affiliation: Virginia Polytechnic Institute and State University
name: Karen A Roberto, PhD
role: PRINCIPAL_INVESTIGATOR
affiliation: Virginia Polytechnic Institute and State University
name: Jyoti Savla, PhD
role: PRINCIPAL_INVESTIGATOR
References: