Care Decisions in the Hospital: Challenges for Family Members of Hospitalized Persons With Dementia

Abstract

Context: Family members of hospitalized persons living with dementia (PLWD) often face complex, high-stakes decisions and experience significant psychological distress. Prior studies of hospitalized patients have focused on the ethical, intrapersonal, and communication-related challenges specific to surrogate decision-making, but few have explored challenges specific to families of PLWD.

Objectives: To understand challenges faced by family members of hospitalized older PLWD as they navigate care decisions.

Methods: This is a qualitative study of family members of hospitalized PLWD from February to December 2020. Hospitalized patients >50 years old with an ICD-coded diagnosis of dementia were identified from the EHR along with at least one family member, and approached for a semistructured interview about decision-making experiences. Interviews were audio recorded, transcribed, and coded by seven investigators using an inductive and constant comparative approach.

Results: Thirty family members completed interviews for 26 unique PLWD. Mean participant age was 62.6 years; 66.7% were female and most identified as the PLWD's adult child (53.3%) or spouse (26.7%). The following themes emerged: 1) determining the PLWD's quality of life, 2) navigating uncertainty in the context of dementia and acute hospitalization, 3) translating PLWD's preferences into high-stakes decisions within the context of progressive cognitive impairment, and 4) unique decision-making challenges related to the early phase of the COVID-19 pandemic.

Conclusion: Family members of hospitalized PLWD faced dementia-specific challenges when making care decisions. Interventions that account for these challenges are needed to better support family members of hospitalized PLWD as they navigate these decisions.

Keywords: Decision-making; acute care; caregiver; dementia; older adults; persons living with dementia.