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

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.

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

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.

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.

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.