Role of Family (No Family) on End-of-Life Dementia Care, by Rurality: Evidence from Utah Population Database

• In Event: Family Ties Across the Life Course and Across the Globe

Abstract

Background: Family members play an increasingly important role in the delivery of long-term care to people with dementia, whose cognitive decline often requires practical and legal reliance on others to be caregivers and surrogate decision makers. Given older adults' preference for aging in place and younger generations' outmigration from rural areas, access to family support may differ between urban and rural residents.
Methods: The retrospective cohort study is based on 47,882 decedents with dementia (DWDs), age 65+ at the time of their death, drawn from the Utah Caregiving Population Science (C-PopS) cohort of the Utah Population Database (UPDB). Descriptive statistics were used to characterize the family networks and socio-demographic profiles of urban and rural DWDs. Logistic regression was used to examine how family availability (or unavailability) is associated with end-of-life (EOL) healthcare utilization.
Results: About one in five rural DWDs (20.30%) are unrepresented (defined as no first-degree family member, i.e., spouse, child(ren), sibling(s), parents(s) living in the state at the time of death), compared to about 17.50% in urban areas. Compared to those in urban areas, DWDs in rural settings were less likely to have more than a high school education (26.8% versus 33%) and more likely to have two or more comorbidities (41.10% versus 39.20%). Half (50.20%) of rural DWDs have at least one inpatient hospitalization in the last six months of life, compared to 47.90% for urban DWDs.DWDs with spouse but no child(ren) have higher rates of EOL hospitalization in the last six months of life (53.70%) than DWDs with child(ren) but no spouse (45.70%).
Conclusions: Rural-urban differences in how the availability and unavailability of family affect EOL dementia care will help inform health policy and future interventions targeting the unique needs of this vulnerable population.

Authors

• Attrayee Bandyopadhyay, University of Utah

• Rebecca L. Utz, University of Utah

• Eli Iacob

• Mike Hollingshaus, University of Utah

• Caroline Stephens