Neurology. 2025 Apr 8;104(7_Supplement_1):4274. doi: 10.1212/WNL.0000000000211564. Epub 2025 Apr 7.
ABSTRACT
OBJECTIVE: To investigate the frequency of quality care in moderate-advanced dementia with Lewy bodies (DLB), including in individuals with and without specialty care.
BACKGROUND: DLB is a common degenerative dementia, however the frequency of high-quality care is unknown.
DESIGN/METHODS: Dyads of moderate-advanced DLB patients and their caregivers were recruited from DLB Centers of Excellence, advocacy organizations, or research registries. Caregivers completed questionnaires regarding demographics, healthcare, and ancillary referrals. Descriptive statistics report the frequency of care aligning with dementia and parkinsonism quality measures. Secondary analyses compared specialty and non-specialty care via chi-square and t-tests. P-values were adjusted for multiple testing.
RESULTS: Of 189 dyads, patients were on average 75±8 years-old (77.8% male, 95.2% White, average time since diagnosis 3.2 ± 3.1 years). Forty percent of participants reported care from a movement or dementia specialist, 34% from a DLB specialist, and 51% from general neurology. 132 (69.8%) patients were taking a cholinesterase inhibitor. The average Anticholinergic Burden (ACB) score was 2.0±2.0. Of 84 patients taking antipsychotic medications, 74 (39.2%) were taking preferred antipsychotics and 10 (5.3%) were taking non-preferred antipsychotics. Eighty-eight participants (46.6%) reported rehabilitation (PT/OT/SLP) referrals, 49 (25.9%) social work referrals, 17 (9%) palliative care, and 22 (11.6%) hospice. There were no differences in cholinesterase inhibitor use (p=0.061), mean ACB score (p=0.348), use of preferred (p=0.560) or non-preferred (p=0.230) antipsychotics, rehabilitation referrals (p=0.719), or hospice referrals (p=0.928) between specialty and non-specialty cohorts. Individuals receiving specialty care were less likely to receive social work (13.9% vs. 34%), p=0.001) and palliative care (3.8% vs. 12.7%, p=0.034) referrals.
CONCLUSIONS: Most individuals with moderate-advanced DLB observed received quality care relating to medications and rehabilitation referrals, however frequency of social work and palliative care referrals were low across both specialty and non-specialty cohorts. There is a need to increase availability of these services and connect individuals with DLB to these supports. Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff. Disclosure: Dr. Burke has nothing to disclose. Dr. Li has nothing to disclose. Mrs. Jury has nothing to disclose. Dr. Galvin has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for Cognivue. Dr. Galvin has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Biogen. Dr. Galvin has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Eisai. Dr. Galvin has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Eli Lilly. Dr. Galvin has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for GE Healthcare. Dr. Galvin has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Roche. Dr. Galvin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for PassageBio. The institution of Dr. Galvin has received research support from National Institutes of Health. Dr. Galvin has received intellectual property interests from a discovery or technology relating to health care. Dr. Galvin has a non-compensated relationship as a Board of Directors with Alzheimer Association Southeast Florida Chapter that is relevant to AAN interests or activities. Dr. Galvin has a non-compensated relationship as a Board of Directors with Lewy Body Dementia Association that is relevant to AAN interests or activities. Dr. Galvin has a non-compensated relationship as a Board of Directors with Lewy Body Dementia Resource Center that is relevant to AAN interests or activities. The institution of Dr. Fields has received research support from National Institutes of Health. The institution of Dr. Fields has received research support from Patient-Centered Outcomes Research Institute. Mrs. Taylor has received personal compensation for serving as an employee of Lewy Body Dementia Association. The institution of Dr. Armstrong has received research support from National Institute of Aging. The institution of Dr. Armstrong has received research support from Florida Department of Health. The institution of Dr. Armstrong has received research support from Lewy Body Dementia Association. Dr. Armstrong has received research support from Parkinson Foundation. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer’s Clinical Trials Consortium. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer’s Disease Cooperative Study. Dr. Armstrong has a non-compensated relationship as a Member, Scientific Advisory Council with Lewy Body Dementia Association that is relevant to AAN interests or activities.
PMID:40194235 | DOI:10.1212/WNL.0000000000211564
