The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives

Abstract

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers ( n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the “right” paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

Care disruptions among the homebound during the COVID‐19 pandemic: An analysis of the role of dementia

“…This may be in part due to the unique challenges paid caregivers face when caring for those with dementia. 27 While those who self‐direct care can problem solve on their own, additional responsibility likely falls to paid caregivers of those with dementia when care deviates from the established care plan. Given the challenges the larger home care system faced during the COVID‐19 pandemic, these findings are not unexpected but emphasize the need for paid caregiver training and support specific to the care needs of people with dementia.…”

“…One notable exception in which COVID‐19 care experiences varied by dementia status was relative to the experience of paid caregivers: more paid caregiver burden was reported among people with dementia. This may be in part due to the unique challenges paid caregivers face when caring for those with dementia 27 . While those who self‐direct care can problem solve on their own, additional responsibility likely falls to paid caregivers of those with dementia when care deviates from the established care plan.…”

2024 Alzheimer's disease facts and figures

“…[780][781][782] In turn, instability in the workforce and understaffing across care settings can lead to stress, injury and burnout among direct care workers, thereby further contributing to turnover while also compromising care access and quality. 783,784 Workforce challenges are driven by persistently low compensation and poor job conditions for direct care workers, which are in turn underpinned by structural racial and gender inequities (that marginalize this workforce composed predominantly of women and people of color), 761 as well as ageism and disablism (toward the individuals receiving care and, by extension, those providing it). 785 According to the most recent national data available, the median wage for direct care workers is just $15.43 per hour and, due to low wages and the high prevalence of part-time positions, median annual earnings are less than $24,000.…”

“…Turnover rates are high in this workforce — with an estimated median rate of 77% annually for direct care workers providing home care 778 and 99% for nursing assistants in nursing homes 779 — and recruitment and retention are long‐standing challenges 780–782 . In turn, instability in the workforce and understaffing across care settings can lead to stress, injury and burnout among direct care workers, thereby further contributing to turnover while also compromising care access and quality 783,784 …”

“…780 , 781 , 782 In turn, instability in the workforce and understaffing across care settings can lead to stress, injury and burnout among direct care workers, thereby further contributing to turnover while also compromising care access and quality. 783 , 784 …”