Living with Dementia: Mental Health and Mortality Effects on Spouses

• In Event: The Economics of Alzheimer’s Disease: Family Spillovers, Diagnosis, and Financial Consequences

Abstract

Alzheimer’s disease and related dementias (ADRD) are among the costliest health conditions in high-income countries. The continuous care demands and neuropsychiatric symptoms of ADRD make it fundamentally a family disease, yet the broader health consequences for the closest family member, the spouse, remain poorly quantified at the population level. As primary caregivers who share a household with the affected individual and are themselves aging, spouses face prolonged exposure to the physical and psychological demands of the disease. Existing survey data lack sufficient sample sizes to study these dynamics, and the slow progression of the disease over many years requires a longitudinal approach that tracks family members from the pre-clinical phase through bereavement.This paper fills that gap by using population-wide administrative data from Denmark (1995 to 2018) and a matched event study design spanning 18 years around the ADRD spouse’s death to estimate the health consequences of having a spouse with ADRD. We match individuals whose spouse develops ADRD to comparable individuals whose spouse does not, and trace outcomes from a decade before diagnosis through several years after the affected spouse’s death.The analysis reveals gradual increases in mental health visits among non-ADRD spouses that peak around the time of spousal death, reaching three-fold the counterfactual level for both men and women. Psychiatric medication use increases by approximately 50% for both sexes over the same period. These outcomes improve after the spouse’s death, suggesting relief from sustained exposure to the disease rather than a permanent health shock. We also find evidence that mortality risk rises for the non-ADRD spouse as their partner develops dementia, with preliminary findings suggesting this increased risk is driven by mental and neurological causes of death. Because this excess mortality generates differential attrition through positive selection on survival, we use Lee bounds to provide informative bounds on the mental health effects of spousal dementia, a novel application in this setting.Our findings indicate that the family health costs of ADRD operate through sustained mental health deterioration over the disease trajectory rather than an acute bereavement shock, with important implications for the design of caregiver support services and the broader cost calculus of dementia policy.

Author

• Yulya Truskinovsky, Syracuse University
  Presenting Author