“I Am the Home Care Agency”: The Dementia Family Caregiver Experience Managing Paid Care in the Home
Open accessAbstract
As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.
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Family caregivers take on many unpaid tasks with little preparation, such as supervision and training, care coordination, and building relationships, which effectively removes family caregivers from the workforce.
“Family caregivers take on many unpaid tasks with little preparation, like supervision and training, care coordination, and building relationships [54], which effectively removes family caregivers from the workforce.”
From Towards defining quality in home care for persons living with dementia (2022) · cites this paper as [54]
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- Authors
- Reckrey, J. M., Watman, D., Tsui, E. K., Franzosa, E., Perez, S., Fabius, C. D., & Ornstein, K. A.
- Affiliations
- Icahn School of Medicine at Mount Sinai (US)
- The Graduate Center, CUNY (US)
- James J. Peters VA Medical Center (US)
- Johns Hopkins University (US)
- Corresponding author
- Reckrey, Jennifer M.
- Venue
- International Journal of Environmental Research and Public Health
- Publisher
- MDPI AG
- Published
- 2022-01-25
- Volume
- 19
- Issue
- 3
- Pages
- 1311
- ISSN
- 1660-4601 (ISSN-L)
- PMC
- PMC8834786
- OpenAlex
- W4210782759
- Cited by
- 32
- References
- 32
- Citations by year
- 2026: 5 · 2025: 8 · 2024: 8 · 2023: 2 · 2022: 9
- FWCI
- 4.40
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Journal of Environmental Research and Public Health (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Funders
- National Institute on Aging (K23 AG066930)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- dementia, family caregivers, professional caregivers, home care agencies, home health aides, personal care attendants, caregiver education, Medicaid, long-term care at home, caregiver experiences, care coordination
- MeSH terms
- Dementia, Home Care Services, Humans, Salaries and Fringe Benefits, United States, Caregivers, Home Care Agencies, Home Health Aides
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