LBD is the Most Expensive Dementia in America

Dementia is one of the most expensive diseases in the United States, increasing healthcare costs 3 times over those without dementia. Until now, studies on the costs of different dementia sub-types were limited by small sample sizes. In the first population-based study estimating healthcare costs by type of dementia, Lewy body dementia (LBD) was identified as the costliest form of dementia.

A recent study led by Katherine Possin, PhD at the University of San Francisco, breaks down costs for the most common forms of dementia. Researchers analyzed 100% of the 2015 California Medicare fee-for-service data to identify the direct health care costs and utilization by people diagnosed with dementia.

Of the original 3+ million beneficiaries, 8.2% had a dementia diagnosis. Most people (59.6%) had an unspecified dementia diagnosis, followed by Alzheimer’s disease (23.2%), Lewy body dementias (4.2%), vascular dementia (4.0%) and frontotemporal dementia (FTD) (0.3%).

Healthcare Costs

Claims data were used to estimate total cost of care, and to break down costs by specific services, including hospitalization, physician visits, emergency room visits, and ambulance services.

The analysis compared Medicare costs of those individuals with specific dementia diagnosis, e.g. Alzheimer’s disease, LBD, vascular or frontotemporal dementia. The cost of care was highest for those with LBD ($22,514 per beneficiary), followed by vascular dementia ($21,002) and FTD ($14,853). People diagnosed with Alzheimer’s disease had the lowest healthcare cost per person ($13,935).

Cost and duration of hospital visits were highest for LBD and vascular dementia, 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 31% higher healthcare costs over those with Alzheimer’s disease. Vascular dementia care cost 10% more than Alzheimer’s disease.

Drivers of Cost

Symptoms or features of the disorder that might drive healthcare costs were also identified. Those included injury-causing falls, delirium, depression, anxiety, delusions, hallucinations, dehydration, urinary incontinence or infection, orthostasis, insomnia or REM sleep behavior disorder.

Of the dementia sub-types studied, people with LBD were more likely to have a history of falls (72.4%), urinary incontinence or infection (27.7%), dehydration (15.6%), depression (15.5%) and anxiety (9.5%). LBD also had the second highest history of delirium (17.4%).

The higher cost of LBD care over Alzheimer’s disease was driven by falls (21.3%), urinary incontinence or infection (15.2%), and psychiatric symptoms (depression 4.9%, anxiety 3.4%, hallucinations 1.25% and delusions <1%), dehydration (4.2%), delirium (3.3%), blood pressure regulation issues (2.7%) and sleep disorders (1.9%).

Breaking LBD into the two distinct diagnoses of dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), the total costs per person were similar ($23,527) for DLB and ($21,639) for PDD. The similar cost of care echoes the overlapping and similar features of DLB and PDD, however differences were also noted. Higher inpatient costs in people with DLB were responsible for the higher healthcare cost. Those with PDD had slightly more falls and those with DLB had more delirium, depression, hallucinations, dehydration, urinary incontinence and infection, and blood pressure regulation problems.

This study has some limitations, as it did not assess costs that are paid privately. For example, the Medicare data studied only included a fraction of the cost of long-term care, which is often privately paid. More research is needed to assess if the long-term care varies by sub-type of dementia. Further, claims-based data limits the true prevalence and thus cost of dementia care. And as this study focused on a single year of claims, it cannot capture changing costs of healthcare as these disorders progress. Medical costs for individuals with younger-onset dementias such as FTD would not be captured in this study. Lastly, the study included data only for the state of California, where most of the population lives in metropolitan areas.

The study highlights an ongoing diagnostic challenge; most cases of dementia were “unspecified” meaning no specific sub-type was identified. This underscores an important gap that can negatively impact clinical management and poses a barrier to adequate education and support of the person with dementia, their primary caregiver and family. Better diagnostic tools and professional education are urgently needed to improve differential dementia diagnosis.

Understanding what drives the higher cost of LBD opens opportunities to develop and proactively deliver interventions in a home or outpatient setting. Opportunities to contain costs and improve care quality include dementia care management, care navigation and clinical management. The authors suggest programs include a focus on those items that drive up the cost of LBD healthcare. This includes 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.

Source: 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.