CareEx: Persons With Dementia and Their Extended Family Caregivers
Study Details
Study Description
Brief Summary
Immediate family members provide the vast majority of care for relatives with Alzheimer's disease, but their availability as caregivers is shrinking. Societal trends, such as declining birthrates and rising divorce rates among middle-aged and older adults raise questions about the sustainability of traditional approaches to family care. At the same time, greater longevity and various social movements, legal and policy changes, and social problems have led to a much broader array of family structures. Older adults now have expanded family boundaries beyond the level of the nuclear family. Their lives are embedded and closely linked to their adult grandchildren, siblings, nieces/nephews as well as non-biological kin, including step-kin- any of whom may become their primary caregiver. An examination of the experiences of these extended family caregivers (CG) and the home and community-based services (HCBS) they use and need to assist with their relatives' care, as well as barriers to service use, will inform delivery of HCBS aimed at ameliorating care-related stressors and improving the quality of life of persons with Alzheimer's disease and other dementias.
The study aim is to learn about different relational types of extended family members' paths to dementia caregiving, how they manage their care responsibilities, what HCBS and informal support they use to meet the needs of the person with dementia (PwD), and the resultant effects on the PwD and their own well-being.
A mixed-methods design will be used to understand the issues faced by the CG and their use of HCBS to care for the PwD. Using an extensive network with organizations in Virginia to identify extended family CG, a telephone interview comprised of open-ended questions, standard items and structured measures, followed by a semi-structured 8-day diary interview of daily experiences with HCBS, will be administered to 240 extended family members who serve as the primary CG of a PwD living in the community.
Study findings will advance scientific knowledge about extended family CG and their use of HCBS beyond that which has emerged from the literature focused on nuclear family CG, providing a more elaborated conception of caregiving that acknowledges the transformations occurring in family life today. This expanded understanding will provide new and relevant information for HCBS/programs designed to support family CG.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
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Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Grandchildren Granddaughter or Grandson of the person with dementia who serves as the primary caregiver |
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| Siblings Brother, sister, brother-in-law or sister-in-law of the person with dementia who serves as the primary caregiver |
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| Nieces/Nephews Niece or nephew of the person with dementia who serves as the primary caregiver |
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| Step-Kin Step-kin (step-daughter, step-son, step-sister, step-brother or other step-kin) of the person with dementia who serves as the primary caregiver |
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| Adult Child Adult child (son or daughter) of the person with dementia who serves as the primary caregiver |
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| Spouse Spouse (husband or wife) of the person with dementia who serves as the primary caregiver |
Outcome Measures
Primary Outcome Measures
- Change in Well-Being of Person with Dementia [Day 1 to Day 8]
The caregiver (CG) will be asked to indicate who helped the person with dementia (PwD) each of the daily diary days with personal activities of daily living and instrumental activities of daily living for which they need help. CG will also be asked if there were any activities for which the PwD needed help that day but did not receive it because no one was there to help them (PwD Unmet Need), or they delayed receiving help or received partial help because no one was available to help them when needed (PwD Under-met Need).
- Well-Being of Caregiver: Role overload [Baseline]
Role overload, a 3-item scale will assess CG subjective appraisal of the time and effort they make in providing care. Participants rate their responses on a 4-point scale ("not at all" to "completely"). Summary scores range from 0 to 9, higher scores indicate greater role overload.
- Well-Being of Caregiver: Role Captivity [Baseline]
Role captivity, a 3-item scale that assesses CG feelings that their involvement exceeds what they are willing to provide. Participants rate their responses on a 4-point scale ("not at all" to "very much"). Summary scores range from 0 to 9, higher scores indicate greater role captivity.
- Well-Being of Caregiver: Work Strain [Baseline]
CG who are employed will be asked 5 work strain items that assess competing demands and strains between CG and employment outside the home. Participants rate their responses on a 4-point scale ("strongly agree" to "strongly disagree"). Summary scores range from 0 to 15, higher scores indicate greater work strain.
- Change in Caregiver Daily Psychological Distress [Day 1 to Day 8]
Using the daily version of the Non-Specific Psychological Distress Scale, each day, the caregiver will indicate how frequently they felt 14 negative/13 positive emotions over the past 24 hours on a 5-point scale from "none" to "all" of the time.
Eligibility Criteria
Criteria
Inclusion Criteria:
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Speaks/reads English
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resident of Virginia
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age 18+
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is either the grandchild, sibling, niece/nephew, step-kin, adult child or spouse of the person with dementia
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is primarily responsible for the hands-on care and/or overall management of care for a person with dementia living in the community (i.e., not service-enriched housing such as a continuing care retirement community (CCRCs) or residential facilities such as assisted living facilities (ALFs) or nursing homes (NHs)
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caregiver co-resides with the person with dementia or has face-to-face contact with the person with dementia at least 3 days/week
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has no difficulty talking/hearing on the telephone
Exclusion Criteria:
- Caregiver of persons with mild cognitive impairment
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Virginia Polytechnic Institute and State University | Blacksburg | Virginia | United States | 24061 |
Sponsors and Collaborators
- Karen Roberto
- National Institute on Aging (NIA)
Investigators
- Principal Investigator: Karen A Roberto, PhD, Virginia Polytechnic Institute and State University
- Principal Investigator: Jyoti Savla, PhD, Virginia Polytechnic Institute and State University
Study Documents (Full-Text)
None provided.More Information
Additional Information:
Publications
None provided.- 20-742
- R01AG069818