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: The purpose of this scoping systematic review was to inform virtual support group development for informal caregivers of dementia by identifying published approaches, outcomes, barriers, and facilitators. Methods: A scoping systematic review was performed using 5 search engines. Studies were included if they utilized virtual support groups for informal caregivers of persons with dementia. Study details, support group characteristics, outcomes, barriers, facilitators, and recommended approaches were extracted and summarized. Results: Of 1052 identified articles, 87 were retrieved; 62 were excluded largely because they described other virtual interventions. Groups typically used teleconferences or internet-based videoconferences, included 4 to 6 participants, lasted 60 minutes, and occurred weekly or monthly. Moderators were professionals; moderator training was common. Content focused on support, education, or both. Covered topics included dementia knowledge, caregiving skills, coping, and resources. Costs related to technology, programming, and staffing. Although most studies identified no statistical differences, caregivers described many participation benefits. Common barriers were technology and access. Facilitators included training, technology support, small groups, and skilled leaders. Conclusions: Clinics desiring to start virtual support groups should consider videoconferencing or telephone approaches with pretraining, technology support, and professional moderators. Clinics need adequate resources, particularly for technology, and identification of locally relevant goals and approach.
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