Preparing LBD Families about End of Life

End of life factors are known to be different in LBD compared to Alzheimer’s disease. The progression of LBD averages 5-7 years from onset to end of life. This is considerably shorter than the 8-10 years in Alzheimer’s disease. Adding typically-delayed diagnosis, this results in a compressed time to address LBD’s complex diagnostic, clinical and caregiving issues.

A new study highlights that Lewy body dementia (LBD) families need better guidance from their healthcare professionals on end of life issues. This includes likely causes of death, timing of engaging hospice services, and what to expect at end of life.

Led by Melissa Armstrong, MD, MSc of the University of FL, Gainesville, researchers explored the end of life experiences in people with one form of LBD: dementia with Lewy bodies (DLB). The study, a collaboration with the Lewy Body Dementia Association, used an online survey about end of life experiences.

The study included caregivers, family members and friends of people who died within the previous 5 years with a DLB diagnosis. Of the 658 respondents, most (89%) were female with a median age of 50-69. The study revealed most care recipients died within 5 years of their diagnosis.

Less than half of the full cohort reported early advanced care planning with their physician (within the first 1-2 years). This underscores a missed opportunity for the patient to discuss preferences and priorities for care with their physician before the disease progresses.  Seventy percent (70%) indicated having advanced directives completed prior to diagnosis. Only 10% indicated advanced directives were revised after diagnosis.

Caregivers indicated providers rarely addressed what to expect at end of life (40% total, but only 22% to a helpful degree). Most conversations on end of life issues were first broached by the caregiver.

Hospice services were used by 78% of respondents, but with widely varying lengths of time. The median time for hospice service use was 1-2 months.  Two thirds of respondents felt hospice was started at the right time. However, that left a substantial minority (25%) feeling hospice was started too late, often within weeks of death. Only 3% felt hospice was started too early.

Care recipients commonly died in skilled nursing or memory care (43%) or at home (36%). Most caregivers (74%) reported they expected the care recipient’s death. Respondents reported the most common causes of death were failure to thrive, such as not eating or drinking (65%), pneumonia and swallowing difficulties (23%). Less common causes included other medical conditions (19%) and complications from falling (10%).  Suicide was reported as very rare (less than 1%).

This study underscores important opportunities for physician-initiated discussions on advanced care planning with persons in the early stage of LBD, counselling patients and their families on the use of palliative care and hospice and preparing patients and LBD families on what to expect at end of life.

This study was supported by the University of Florida Dorothy Mangurian Headquarters for Lewy Body Dementia, the Raymond E. Kassar Research Fund for Lewy Body Dementia, and the Lewy Body Dementia Association. Dr. Armstrong is the primary investigator at University of Florida’s LBDA Research Center of Excellence.