The Impact of Disruptive Events Among Community-Dwelling Persons with Dementia

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RP2 PROJECT SUMMARY Traditional models of the experience of persons with Alzheimer’s disease and related dementias have largely focused on the inexorable dwindling of physical and cognitive function. Recent research by our group, others, and clinical experience suggest that persons with Alzheimer’s disease and related dementias experience sudden serious adverse events that markedly alter disease trajectory. Such “disruptive events” can include traumatic injuries such as hip fracture, medical events like pneumonia, or social or emotional upheavals such as the death of a spouse. There is a critical need to understand the impact of disruptive events on persons with Alzheimer’s disease and related dementias and families, including functional decline, survival, and need for increased personal care, as well as their impact on the healthcare system, including healthcare costs and service use. We will use the longitudinal, nationally representative Health and Retirement Study linked to Medicare claims to characterize the incidence and impact of disruptive events on community-dwelling persons with Alzheimer’s disease and related dementias. We will focus on three examples of disruptive events that prior work suggests may differentially impact persons with Alzheimer’s disease and related dementias: (1) hip fracture (i.e. surgical crisis); (2) hospitalization for pneumonia (i.e. medical crisis); or (3) death of a spouse (i.e. social crisis). We will examine the impact of these events on outcomes that are meaningful to patients, families, and health systems by a) comparing trajectories and outcomes for persons without dementia who experience disruptive events and b) comparing trajectories and outcomes for persons with Alzheimer’s disease and related dementias experiencing or not experiencing disruptive events. Our specific aims are: (1) To determine the incidence of the disruptive events among persons with Alzheimer’s disease and related dementias; (2) To compare the impact of disruptive events in persons with and without Alzheimer’s disease and related dementias; and (3) To examine persons with Alzheimer’s disease and related dementias who do and do not experience disruptive events. The knowledge gained from this proposal will guide community- dwelling persons with Alzheimer’s disease and related dementias, caregivers, and clinicians in decision making and planning for outcomes following disruptive events, inform the design of interventions to prevent or delay negative outcomes following a disruptive event, and lead to policy changes that prepare our health and social systems for the rising prevalence of dementia.