The clinical course of Alzheimer's disease and related dementia syndromes is marked by progressive cognitive decline and functional disability. At end-of-life, hospice is a model of care that aims to ameliorate disability by optimizing quality of life for people who are dying and their families. Virtually all research on end of life care of persons living with dementia, especially in hospice, has focused on the dementia as a principal diagnosis and proximate cause of death. Yet older persons at the end of life frequently have many co-existing conditions. Many hospice enrollees whose indication for hospice care is a diagnosis other than dementia still have co- existing dementia. The co-existence of dementia with hospice indications such as cancer or congestive heart failure is likely to have profound implications for care and outcomes. To address the goals of the National Plan to Address Alzheimer's Disease to enhance care quality and expand supports for caregivers and those with dementia, we need to ensure that end-of-life quality of life is optimized for people with dementia, whether dementia is the primary cause of death, or co-exists with another end of life condition. The overarching goal of the UCSF Older Americans Independence Center (OAIC) is to prevent late-life disability when possible, and to improve the quality of life of older people with disability when prevention is not possible (amelioration). The proposed administrative supplement extends this goal specifically to vulnerable older adults who have Alzheimer's disease and related dementias. This proposal fits within the conceptual framework that guides the UCSF OAIC, which holds that care for elders with disability and dementia must consider the wider medical and social context. We will leverage the expertise of the OAIC Data Analysis Core and the nationally representative National Health Aging and Trends Study (NHATS) to shed light on an understudied population: hospice enrollees with comorbid dementia. Our proposal aims to quantify and compare characteristics and outcomes of older adults dying with comorbid dementia while receiving hospice care for another condition contextualized in comparison to two groups: A) hospice recipients with a primary diagnosis of dementia and B) hospice decedents with neither a primary diagnosis of dementia nor comorbid dementia (e.g. without dementia). Data from the ADRD supplement would provide critical preliminary data for a compelling NIA ADRD R01 application that uses NHATS to examine end- of-life experiences and costs for persons dying in hospice with comorbid dementia. Our findings will help identify opportunities to improve hospice care and policy for hospice decedents dying with or from dementia. Such research aligns with NIA strategic directions for 2020 to support research that improves our understanding of ADRD (goal D) and to inform intervention development and policy decisions (goal E).
People with Alzheimer's disease and related dementia syndromes deserve hospice care that ameliorates disability and optimizes quality of life for people who are dying and their families. Little is known about older adults who are receiving hospice for another terminal illness but have comorbid dementia. This administrative supplement will quantify and compare characteristics and outcomes for hospice decedents dying with comorbid dementia as well as those with advanced dementia and those dying from another terminal illness with dementia as neither primary nor secondary cause of disease in a nationally representative population.
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