Societal and Family Lifetime Cost of Dementia: Implications for Policy

Abstract

Objective To estimate the cost of dementia and the extra cost of caring for someone with dementia compared to someone without dementia. Design We developed an evidence-based mathematical model to simulate disease progression for newly diagnosed individuals with dementia. Data driven trajectories of cognition, function, and behavioral/psychological symptoms were used to model disease progression and predict costs. Using modeling, we evaluated lifetime and annual costs among those with dementia, compared costs between those with and without dementia clinical features, and evaluated the effect of reducing functional decline or behavioral/psychological symptoms by 10% for 12 months (implemented when Mini-Mental State Examination≤21). Setting Mathematical model. Participants Representative simulated US incident dementia cases. Measurements Value of informal care, out-of-pocket expenditures, Medicaid expenditures, and Medicare expenditures. Results From time of diagnosis (mean age of 83 years) discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140). Medicaid accounted for 14% ($44,090) and Medicare accounted for 16% ($52,540) of total cost, respectively. Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000 and net cost peaked at $72,400. Compared to natural disease progression, reducing functional decline or behavioral/psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs, respectively. Conclusion Dementia substantially increases the lifetime costs of care. Long lasting effective interventions are needed to support families as they incur the most dementia cost.

2020 Alzheimer's disease facts and figures

“…The total lifetime cost of care for someone with dementia was estimated at $357,297 in 2019 dollars. Seventy percent of the lifetime cost of care is borne by family caregivers in the forms of unpaid caregiving and out‐of‐pocket expenses for items ranging from medications to food for the person with dementia 312,313 . Current estimates of the lifetime costs of care may underestimate the impact of a relative's dementia on family caregivers’ health and workplace productivity 314 …”

“…Researchers have evaluated the additional or “incremental” health care, residential long‐term care and family caregiving costs of dementia (that is, the costs specifically attributed to dementia when comparing people with and without dementia who have the same coexisting medical conditions and demographic characteristics) 312,520‐522 . In a recent systematic review of studies of older adults with Alzheimer's and other dementias enrolled in private Medicare managed care plans, researchers found a wide range of incremental costs attributable to Alzheimer's and other dementias 523 .…”

The Roles of Age and Aging in Essential Tremor: An Epidemiological Perspective

“…For example, in 2050, the population in the United States aged 65 and over is projected to be 83.7 million, which is almost double its estimated population of 43.1 million in 2012 [1]. As aging is associated with a variety of medical conditions, and the costs of these conditions are considerable [3][4][5], it behooves us to gain an understanding of the intersections between aging and human disease.…”

Identifying and Supporting Nonpharmacological Dementia Interventions Ready for Pragmatic Trials: Results From an Expert Workshop

“…1 Improving ADRD care is a national priority. 2 Over 5 million Americans currently live with ADRD; the lifetime cost of caring for a person with ADRD is $321,780, 3 and on a population level annual costs exceed $226 billion. 4 Numerous non-pharmacologic interventions have demonstrated efficacy in improving outcomes in persons with ADRD and their caregivers in multiple care settings.…”