The Role of Paid Caregivers in Home-Based Dementia Care

Project Summary The purpose of this proposal is to better understand factors that determine the roles that paid caregivers (personal care aides, home health aides, and other direct care workers) play in the home-based care of persons with dementia (PWD). The progressive functional and cognitive declines of dementia result in increasing care needs that family caregivers are not always able to meet. Paid caregivers provide help with not only functional tasks like bathing or cleaning, but also other care tasks like communicating with the healthcare team and monitoring chronic conditions that support the overall health of PWD. Yet paid caregivers are usually studied apart from those they care for. The factors that determine paid caregiver roles in the person-centered dementia care team are unknown. This project has the following research aims: 1) Examine the association between intensity (type and quantity) of care provided by paid and family caregivers and adverse consequences of unmet care needs among PWD living in the community over time using data from the National Health and Aging Trends Study (NHATS); 2) Explore multiple perspectives (family caregiver, paid caregiver, and medical provider of persons with moderate or severe dementia receiving home-based medical care) on the factors (e.g. clinical, social, health system, community) that determine paid caregiver roles and care team interactions over time using longitudinal qualitative interviews; and 3) Elicit key stakeholder perspectives (e.g. dementia and caregiving advocacy groups, representatives of LTSS and health care providers) on policy factors that impact paid caregiver roles in dementia care at home and promising practices to improve paid caregiver integration in the person-centered care team. Employing complimentary research methods, completion of these research aims will provide key insights into factors that impact ways that paid caregivers work with family caregivers to provide comprehensive care and inform the policies and practices that seek to help PWD continue to live at home. In addition, completion of training aims associated with these research aims will allow Dr. Jennifer Reckrey to become an independent researcher with a broad skill base in research methodology (dementia research, longitudinal data analysis, qualitative framework analysis method), policy understanding (knowledge of community-based long-term services and supports and the paid caregiver workforce), and subject expertise (interdisciplinary research network to advance paid caregiver role in the care of PWD). With strong mentorship at the Icahn School of Medicine at Mount Sinai, support from a committed advisory team, and a program of clearly defined training, the proposed project and career development plan will enable Dr. Reckrey to conduct independent research that guides health policy to maximize the positive impact of paid caregivers on PWD living at home.