Caregiving for Dementia and the Medicare Expenditures of Spouses of Persons with Dementia

Abstract

Over 6.7 million Americans are living with Alzheimer’s Disease and Related Dementias and this population of persons living with dementia (PLWD) is projected to double in the next 30 years. This means that demand for dementia care and costs associated with the condition will also be increasing over this period. PLWD require a substantial amount of formal medical care, an estimated $345 billion of direct costs in 2023, and they also need a large amount of day-to-day help provided by family and friends as caregivers. While there are some benefits to caregiving, having a household member with dementia, especially a spouse, can result in significant strains that translate to worse health outcomes, greater healthcare utilization, and higher healthcare expenditures. This dissertation uses data from the Health and Retirement Study linked to Medicare claims to quantitatively answer questions related to gaps in literature on dementia. Major findings include: PLWD have a significant increase (nearly double) in receiving caregiving for activities of daily living before and after dementia onset; certain PLWD subpopulations (Black PLWD, PLWD with lower educational attainment, PLWD with no private health insurance) are less likely to receive help with ADLs or IADLs even after controlling for difficulty with ADLs, IADLs, and co-occurring chronic conditions; spouses of PLWD incurred, on average, $2,748 higher Medicare Part A & B expenditures in the fifth year post dementia onset compared to their no dementia counterparts; spouses of PLWD incurred significantly higher expenditures, $6,315, than spouses with of partners with no dementia in the year leading up to partner death. This body of work contributes important quantitative contributions to the dementia care literature, in regard to the caregiving needs of PLWD pre- and post- dementia onset and to the indirect costs of dementia on PLWD spouse’s health care spending.