Keywords: dementia, family caregiving, institutionalization, costs
Objective: To estimate the cost (value of informal care, out-of-pocket expenditures, Medicaid long-term care facility expenditures, and Medicare expenditures) of dementia. Methods: We developed an evidence-based mathematical model to simulate dementia progression for newly diagnosed individuals using three important clinical features - cognition, function, and behavior. Disease trajectories were derived from regression analyses of the Uniform Data Set of the National Alzheimer’s Coordinating Center. Clinical features affected transitions between place of residence (community or long-term care facility) and insurance status (Medicare-only or Medicare-Medicaid). Using modeling, we evaluated lifetime costs among those with dementia. Results: Discounted total lifetime cost of care for a person with dementia was $322,900 (2015 dollars). Families incurred 72% of the total cost burden ($232,940). Medicaid accounted for 12% ($37,390) and Medicare accounted for 16% ($52,540) of total cost, respectively. Conclusion: Dementia substantially increases the lifetime costs of care. Families incur the largest cost burden of dementia.