A National Study of Psychosocial Well-being of Spouses of Persons Living with Dementia in the Last Years of Life

Outcomes 1. To compare the psychosocial needs of spouses of persons living with dementia in the last years of life to spouses of persons with no cognitive impairment in the last years of life.2. To understand clinical and policy-level strategies that can address the unique psychosocial needs of spouses of persons living with dementia prior to the death of their partners. Key Message Spouses of persons living with dementia (PLWD) in the last years of life experience worsened loneliness, depression, and life satisfaction, compared to spouses of persons with no cognitive impairment in the last years of life. Clinical and policy approaches are needed to support the unique psychosocial needs of spouses of PLWD in the years prior to their partner's death. Introduction/Context Spouses of persons living with dementia (PLWD) in the last years of life may be at risk for psychosocial distress in the years prior to their partner's death. Objective To compare the psychosocial well-being of spouses of PLWD to spouses of persons with no cognitive impairment (PNCI) nearing the end of life. Methods We used a nationally-representative married couples cohort from the Health and Retirement Study (2006-2018), including spouses interviewed within 2 years of death of their partner (N& # 3f1,113), and who had data before and after the death of their partner (N & # 3f885). Cognitive impairment of partners included: No Cognitive Impairment (PNCI), Cognitive Impairment Not Dementia (CIND), and Dementia (PLWD). Outcomes included validated measures of loneliness, social isolation, depression, and life satisfaction. We used multivariable logistic regression to determine 1) the adjusted prevalence of each outcome among spouses, and 2) the change in outcomes for spouses before and after their partner's death. Results Spouses were on average 73 years old (SD: 10), 66% women, 7% Black, 7% Hispanic, 24% married to persons with CIND, and 19% married to PLWD. After adjustment, in the two years prior to their partner's death, spouses married to PLWD experienced more loneliness (PNCI: 8%, CIND: 10%, PLWD: 18%; p< 0.003), depression (21%; 27%; 28%, p-value=0.18), and less life satisfaction (74%; 68%; 64%; p< 0.01). Spouses of PLWD were not more socially isolated. After death, bereaved spouses had similarly high prevalence of psychosocial outcomes across cognitive status (for example, loneliness 2 years after death: PNCI: 50%, CIND: 53%, PLWD: 47%). Conclusion Spouses of PLWD experience profound psychosocial distress years prior to the death of their partner, compared to spouses of PNCI nearing the end-of-life. Robust upstream clinical and policy-level programs to address psychosocial needs for spouses of PLWD in the years prior to death are needed. Keywords Loss, Grief, Bereavement / Disease specific management