It’s a well-known fact that Lewy body dementia (LBD) has different end of life factors than Alzheimer’s disease. In fact, while people with Alzheimer’s disease typically have an eight to ten-year lifespan after onset of the disease, those with LBD average five to seven years from onset of Lewy body dementia symptoms until the end of life. When you consider that diagnosis of LBD is typically delayed, the result is a very short time to address the complexity of LBD. Are families of people with LBD being given enough guidance on end of life issues? Research from 2019 suggests that healthcare professionals could be doing a better job with this.
In a study out of the University of FL, Gainesville, in collaboration with the Lewy Body Dementia Association, researchers looked at end of life experiences for people with dementia with Lewy bodies (DLB), a form of LBD. Using an online survey, they asked care partners, family members, and friends of people who had died with a DLB diagnosis in the past five years about their experiences. There were 658 respondents, and most of their care recipients died within five years of the diagnosis. Findings from the study included:
- Less than half of the people surveyed reported advanced care planning with their physician. This means the people with LBD did not get a chance to discuss their preferences and priorities for end of life care before the disease progressed. Further, while 70 percent reported having advanced directives before the diagnosis, only 10 percent indicated that those directives were changed afterwards.
- Care partners in the survey reported that medical providers did not offer information about what to expect at end of life. Only 40 percent said this topic was broached, and only 22 percent indicated that it was discussed to a helpful degree. Most of these conversations were initiated by the care partner.
- Hospice services varied widely. They were used by 78 percent of respondents, but the length of time varied, averaging one to two months. And while two thirds of the respondents felt hospice began at the right time, 25 percent felt it started too late.
- Most care partners reported that they expected the care recipient’s death. The most common cause of death was failure to thrive, followed by pneumonia and swallowing difficulties. Less common causes were other medical conditions and complications from falling.
This study shows just how important it is for physicians to initiate advance care planning discussions with people in the early Lewy body dementia stages. Research is also needed to inform clinicians of when end of life may be approaching, such as the Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences (PACE-DLB) Study. Led by Melissa Armstrong (credentials here) of the University of FL, this study will explore disease progression and care needs for persons with advanced dementia with Lewy bodies (DLB).
Considerations for Planning:
- Do advance care planning early. The person with LBD and their family should discuss wishes surrounding the appropriate health care surrogate(s) and living wills. These discussions can be assisted by clinicians, social workers, and elder law attorneys.
- Think ahead. In interviews after the survey, care partners reported that the end of life went more smoothly if they had details – even things like funeral arrangements – planned out in advance. This can be helpful for anyone, not just for people with diseases like LBD.
- Talk to your doctor. The survey found that physicians often don’t raise topics relating to end of life. If you have questions about this, make sure to ask.
- Consider palliative care. While hospice services in the United States are intended to support the last 6 months of life, palliative care is appropriate at any stage of LBD. Palliative care is specialized medical care that focuses on quality of life for people with serious illnesses and their families.
- Create meaning. In follow up interviews, care partners of people who died with LBD described activities that helped them during the end of life period, such as intentionally creating special memories with the person with LBD, making art (e.g. songs) for the person with LBD, documenting their experiences, and finding value in helping others.
The Lewy Body Dementia Association is a nonprofit organization dedicated to raising awareness of LBD, with a focus on serving all individuals affected by this disease. We work to support people with LBD, along with their families and care partners, through outreach, education, and research. To learn more, contact us through our website, sign up for our email newsletter, or connect with us on Facebook or Twitter.
Armstrong MJ, Alliance S, Corsentino P, DeKosky ST, Taylor A. Cause of death and end-of-life experiences in dementia with Lewy bodies. J Amer Geriatr Assoc 2019; 67(1):67-73. https://doi.org/10.1111/jgs.15608.
Armstrong MJ, Alliance S, Taylor A, Corsentino P, Galvin JE. End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers. PLoS One 2019; 14(5): e0217039. https://doi.org/10.1371/journal.pone.0217039.
Armstrong MJ, Alliance S, Corsentino P, Lunde A, Taylor A. Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: an interview study. Dementia 2022; 21(1):287-303. DOI: 10.1177/14713012211038428.