Objectives To investigate the natural history, cause of death, and end‐of‐life experiences of individuals diagnosed with dementia with Lewy bodies (DLB). Design Twenty‐question online survey administered through the Lewy Body Dementia Association. Setting United States. Participants Caregivers, family, and friends of individuals who died in the past 5 years with a diagnosis of DLB (survey respondents: n = 658, 89% female, median age 50–69). Measurements The survey included 3 questions about the respondent's background and 17 about the end‐of‐life experiences of the person with DLB. Topics included time from symptom onset and diagnosis to death, cause of death, advance directive completion, end‐of‐life education, hospice use, and location of death. Results were analyzed descriptively. Results Most individuals with DLB died within 5 years of diagnosis (median 3–4 years). Respondents indicated that physicians rarely discussed what to expect at the end of life (40% total, but only 22% to a helpful degree) and that the caregiver usually initiated such conversations. Death was usually expected, but fewer than half of respondents felt prepared for what to expect. Seventy‐eight percent used hospice, usually at home or in skilled care, with wide variations in duration. Failure to thrive was the most common cause of death (65%), followed by pneumonia and swallowing difficulties (23%), other medical conditions (19%), and complications from falling (10%) (multiple causes allowed). Conclusion Study results highlight a critical need for better prognostic counseling and education for persons and families living with DLB. The results of the current study can inform such counseling, but additional studies are needed to further explore expected prognosis of individuals diagnosed clinically with DLB and optimal use of palliative care services. J Am Geriatr Soc 67:67–73, 2019.

Background Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. Method We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. Results Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. Conclusions Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

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Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care—from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.