Studies assess quality-of-life factors for Lewy body dementia patients, caregivers

By Michelle Koidin Jaffee

Two new papers led by University of Florida researchers examine factors that influence quality of life for patients with moderate-to-advanced Lewy body dementia and their caregivers.

The research, part of a multisite longitudinal study at five Lewy Body Dementia Association Research Centers of Excellence — UF, University of Michigan, Mayo Clinic, University of Virginia and University of Miami — is aimed at illuminating which symptoms currently have therapeutic options as well as where new strategies are needed to improve quality of life.

Dr. Melissa Armstrong headshot 2023
Dr. Melissa Armstrong

Led by Melissa Armstrong, M.D., M.Sc., a researcher with the McKnight Brain Institute and Norman Fixel Institute, the ongoing study follows more than 140 individuals with moderate-to-advanced Lewy body dementia and their caregivers for three years or until three months after the death of the person with the disease, aimed at providing insight into predictors of the final months of life and identifying opportunities to improve end-of-life care.

New findings from the study were reported Feb. 23 in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association and in a separate paper on April 10 in Neurology Clinical Practice. In Alzheimer’s & Dementia, the research team reported that worse patient-reported quality of life correlated with daytime sleepiness, autonomic symptom burden — such as dizziness and urinary tract problems — and behavioral symptoms such as depression and hallucinations.

In Neurology Clinical Practice, the researchers reported that almost 40% of caregivers reported they were experiencing a high burden and/or depression and that these experiences correlated with fluctuation and severity of behavioral symptoms, sleepiness and autonomic symptoms of the person they were caring for.

“People with dementia with Lewy bodies can have ups and downs with how they do from moment to moment,” said Armstrong, an associate professor in UF’s department of neurology. “That really affected the caregivers, too — if you don’t know if any given moment’s going to be a good moment or a bad moment, that’s really hard on caregivers.”

For the Alzheimer’s & Dementia paper, researchers analyzed results of 61 questionnaires completed by both the patient and caregiver, as well as results from 85 questionnaires completed by a caregiver only. Patients and caregivers were recruited for the study from specialty clinics, advocacy organizations and research registries.

LBD getty cropFor the Neurology Clinical Practice paper, 143 caregivers (caregivers only) provided the data. Of them, 83.5% were women and 84.7% were spouses of the patient.

The findings are part of a National Institutes of Health-funded study by Armstrong and collaborators called “Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences,” or PACE-DLB.

In a separate review article published Feb. 13 in the Journal of Alzheimer’s disease, Armstrong and collaborator Lisa Barnes, Ph.D., of Rush University Medical Center explore factors in the underdiagnosis of dementia with Lewy bodies in Black adults, and they write that improving recognition of the disease in Black adults will require new research to investigate reasons for diagnostic disparities as well as outreach to raise awareness.