Research Priorities of Individuals and Caregivers With Lewy Body Dementia: A Web-based Survey.

Introduction: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential.

Methods: A web-based survey of people living with LBD and current and former caregivers of people with LBD queried research priorities through forced ranking and exploration of burden of LBD symptoms.

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study.

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.

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.

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.

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

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.

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

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.