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Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies

Journal of the American Geriatrics Society Jan 16, 2019

Armstrong MJ, et al. – In this study, researchers examined the natural history, cause of death, and end-of-life experiences of people with dementia with Lewy bodies (DLB) in the United States. Study participants included 658 caregivers, family, and friends of people who died in the past 5 years with a diagnosis of DLB. They completed a 20-item online survey administered by the Lewy Body Dementia association. According to findings, the majority of individuals with DLB died within 5 years of diagnosis. Survey respondents reported that physicians rarely initiated and held conversations over what to expect at end of life. In addition, although death was usually expected, < 50% of respondents reported feeling prepared for what to expect. Hospice care was utilized by 78% of respondents, usually at home or in skilled care, though duration varied widely. Death was most commonly attributed to failure to thrive (65%), followed by pneumonia and swallowing difficulties (23%), other medical conditions (19%), and complications from falling (10%; multiple causes allowed). Overall, findings from this study emphasized a critical need for better prognostic counseling and education for persons and families living with DLB.

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