Frequency of Quality Care in Dementia With Lewy Bodies in Cohorts With and Without Specialty Care
Rachael Burke1, Zhigang Li2, Hannah Jury3, James Galvin4, Julie Fields5, Angela Taylor6, Melissa Armstrong7
1University of Florida Department of Neurology, 2Biostatistics, 3Neurology, University of Florida College of Medicine, 4University of Miami Miller School of Medicine, 5Mayo Clinic, 6Lewy Body Dementia Association, 7UF Department of Neurology
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.
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