Persons With Dementia and Their Extended Family Caregivers (CareEx)

Karen Roberto

Status: Enrolling

Conditions: Neuro-Degenerative Disease; Dementia of Alzheimer Type; Dementia Alzheimers; Dementia Severe; Dementia

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT04863859

20-742

R01AG069818 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Enrollment: 360 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

360 participants in 6 patient groups

Grandchildren

Description:

Granddaughter or Grandson of the person living with dementia who serves as the primary caregiver

Siblings

Description:

Brother, sister, brother-in-law or sister-in-law of the person living with dementia who serves as the primary caregiver

Nieces/Nephews

Description:

Niece or nephew of the person living with dementia who serves as the primary caregiver

Step-Kin

Description:

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

Adult Child

Description:

Adult child (son or daughter) of the person living with dementia who serves as the primary caregiver

Spouse

Description:

Spouse (husband or wife) of the person living with dementia who serves as the primary caregiver