Cause of Death and End‐of‐Life Experiences in Individuals with Dementia with Lewy Bodies

Abstract

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.

Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study

“…It takes over a year for half of individuals with DLB to receive a diagnosis [33]. Family members of individuals who died with DLB described both lack of knowledge of what to expect and negative experiences relating to lacking healthcare professional education and knowledge [12,34,35]. While α-synuclein deposition has been the presumed pathogenic cause of DLB for years, recent re-analysis questions this assumption [36].…”

“…For example, symptoms such as cognitive fluctuations, hallucinations, and dream enactment behavior distinguish individuals with DLB from AD [ 9 ]. Individuals with clinically-diagnosed DLB survive a median of 3–4 years after presentation [ 10 – 12 ], shorter than individuals with PD [ 13 , 14 ] or AD dementia [ 11 , 15 ]. Caregiver burden in DLB may be similar to PD dementia [ 16 ], but it is higher in DLB compared to AD dementia [ 17 – 19 ].…”

Palliative Care in Advanced Dementia

“…Only around a fifth of family carers felt informed about what to expect at the end of life and usually initiated discussion (124). They are little accompanied in their emotional burdens and are at risk of prolonged grief.…”

End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers

“…Despite this, little is known regarding end-of-life (EOL) experiences of individuals with DLB and their families. Individuals with DLB survive a median of 3–4 years after presentation [3–5] reflecting shorter survival than those with Alzheimer disease (AD) dementia [4, 6] and Parkinson’s disease (PD) [7, 8]. Individuals with DLB have a unique symptom profile which may affect EOL experiences, including hallucinations, paranoia, cognitive fluctuations, parkinsonism, and antipsychotic hypersensitivity [9].…”

“…Causes of death in PD are similar to those in non-PD cohorts, particularly for mild to moderate PD [10], whereas individuals with Lewy body dementia commonly die from dementia-related complications and have more than double the likelihood of respiratory death as those with AD dementia [11]. Failure to thrive is the most common cause of death in DLB (65%), followed by pneumonia/swallowing difficulties (23%) [5].…”