Valued Life Activities in Alzheimer’s Disease and Related Dementias
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Abstract/Summary The clinical course of Alzheimer’s Disease and related dementias is marked by progressive cognitive decline and functional disability. Even when these outcomes cannot be prevented, care models need to focus on helping people adapt to cognitive and functional decline to maintain quality of life. Valued life activities (VLA) include a range of activities deemed important to an individual (e.g. church attendance, going to movies, visiting with family or friends). VLA are a person-centered integrative measure that captures both medical and social factors, including but not limited to cognitive ability, physical function, financial resources, and family support. The ability to engage in VLA is a critical component of quality of life. Though VLA are of obvious importance to community dwelling persons with Alzheimer’s Disease and related dementias we know surprisingly little about VLA in this population. Prior research suggests a crucial role for continued engagement in VLA in the setting of other chronic disabling conditions. Yet we know little about VLA in Alzheimer’s Disease and related dementias: how often they are able to stay engaged with VLA, change in VLA over time, and factors that promote continued engagement. The long-term goal of this project is to include VLA as an outcome clinicians, researchers, and policy makers use to evaluate the benefits and burdens of interventions and systems changes in dementia. 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 expands 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 nationally representative National Health and Aging Trends Study (NHATS) to describe VLA in community-dwelling elders (age >65) with Alzheimer’s Disease and related dementias. We will use this cohort in NHATS to conduct (1) Determine the prevalence of participation in VLA over time among persons with Alzheimer’s Disease and related dementias; and (2) Determine the medical and social factors that predict ability to participate in VLA over time for Alzheimer’s Disease and related dementias. The knowledge gained from this study will provide information critical to an NIA Alzheimer’s Disease and related dementias R01-funded longitudinal study of the association between VLA and patient quality of life, mortality, and health care costs over time.
