Paid Caregiving Among Persons with Dementia: Patient and Family Caregiver Outcomes

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Project Summary: The purpose of this proposal is to examine factors associated with receipt of paid caregiving in a national sample of persons with dementia and to evaluate the impact of receipt of paid caregiving on patients and their family caregivers. As dementia progresses and functional impairment increases, family caregivers are often unable provide the level of care necessary to allow persons with dementia to live safely at home. As a result, they often turn to paid caregivers (including home health aides, home attendants, and personal care assistants) to provide additional hands-on care. These paid caregivers are intimately involved in the care of persons with dementia, but are often not integrated into the health care team. The minimal study of paid caregivers that exists focuses largely on workforce issues such as recruitment and retention, job satisfaction, and training. We know very little about what factors contribute to receipt of paid caregiving or the impact of that care on persons with dementia and their family caregivers. Utilizing the rich data of the nationally representative National Health and Aging Trends Study (NHATS) and the linked National Study of Caregiving (NSOC,) we will examine the individual, family, and geographic factors associated with receipt of paid caregiving among persons with dementia. After matching persons with dementia based on their propensity to receive paid caregiving, we will then examine the impact of receipt of paid caregiving on the unmet needs of patients (e.g. going without washing up because there is no one to help with bathing.) We will also examine the impact of receipt of paid caregiving on the family caregivers' negative effects of caregiving (e.g. financial, emotional, and physical difficulty due to caregiving.) This data will provide high value information that will help policy makers and health systems develop better ways to care for persons with dementia.