Thank you for the opportunity to provide public comment to the Advisory Council on Alzheimer’s Research, Care and Services.
I’m here to share some important research findings about the cost of dementia care by sub-type. The study was led by Dr. Katherine Possin at the University of San Francisco and supported by funding from the Global Brain Health Institute, US Dept. of Health and Human Services, Centers for Medicare and Medicaid, the National Institute on Aging and National Institute for Neurological Disorders and Stroke.
The study aim was to identify direct health care costs and utilization by people diagnosed with dementia. Researchers analyzed 100% of the 2015 Medicare fee-for-service claims data in CA. This represented claims from over 3 million beneficiaries. The average cost of care for people in CA without dementia was just over $6K in 2015. Care for those diagnosed with dementia was nearly three times higher at just under $17k.
The analysis also compared costs of individuals with specific dementia diagnosis, specifically Alzheimer’s disease (AD), Lewy body dementias (LBD), vascular or frontotemporal dementia. In the crude analysis, those with LBD had the highest cost of care, at over $22K/beneficiary. LBD costs were 25% higher than the average care cost of dementia care. People diagnosed with Alzheimer’s disease had the lowest healthcare cost of the 4 dementia subtypes, just under $14K.
Costs were also broken-down costs by specific services, including hospitalization, physician visits, emergency room visits, and ambulance services. People with LBD had the highest average number of physician visits, at 42 visits in 2015.
Care cost differences were largely driven by differences in hospitalization. The cost and length of hospital stays were highest for vascular dementia and LBD, each almost double the cost of AD. These higher costs were driven by more frequent visits to the emergency department and the use of ambulances. Those with LBD also had higher Medicare-funded home health costs.
Researchers then controlled for demographic, comorbid conditions and length of Medicare coverage in 2015. Those with LBD had the highest care costs, and on average were 31% than those with Alzheimer’s disease.
The study revealed people with LBD had the highest proportion of the following: a history of falls, urinary issues including incontinence or infection, dehydration, depression and anxiety. LBD had the second highest proportion with delirium, delusions and sleep disorders.
Breaking LBD into the two specific diagnoses of dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), DLB care was about $2k more expensive in 2015 than PDD, again driven by inpatient care. While this study highlights the cost of care after a diagnosis is made, research suggests DLB is commonly missed when dementia is first diagnosed; so, the care costs may be higher.
Understanding what drives the higher care costs of LBD opens opportunities to develop and proactively deliver interventions in a home or outpatient setting. The study authors recommend programs focus on items that drive up the cost of LBD healthcare, including fall prevention, early identification and treatment of medical issues including urinary tract infections and dehydration, and attention to any sudden change in health status such as delirium, worsening psychiatric symptoms and sleep problems.
This study emphasizes recommendations made at the 2017 Dementia Care and Services Summit: the importance of developing tailored, non-pharmacological interventions for specific dementia sub-types, with the aim of improving health outcomes, reducing caregiver burden, and reducing the utilization and cost of medical care.
I hope these comments provide an even greater appreciation for the cost (pun definitely intended) of an LBD diagnosis on individuals, families and society.
I thank the Council, both federal and non-federal members, for all your continued work to advance progress on the 2025 goals of the National Alzheimer’s Plan.
- Chen Y, Wilson L, Kornak J, et al. The costs of dementia subtypes to California Medicare fee-for-service, 2015. Alzheimers Dement. 2019;15:899-906.