Sharma Rashmi K, Dzeng Elizabeth, O'Brien Janaki M, Thomas Amy C, Ungar Anna, Nielsen Elizabeth L, Engelberg Ruth A
Division of General Internal Medicine (R.K.S.), University of Washington, Seattle, Washington, USA; Cambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA.
Division of Hospital Medicine (E.D.), University of California San Francisco, San Francisco, California, USA; Cicely Saunders Institute (E.D.), King's College London, London, United Kingdom.
J Pain Symptom Manage. 2025 Jul;70(1):1-9.e3. doi: 10.1016/j.jpainsymman.2025.03.025. Epub 2025 Apr 2.
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.
患有痴呆症的住院患者（PLWD）的家庭成员通常面临复杂、高风险的决策，并经历重大的心理困扰。先前对住院患者的研究主要集中在代理决策特有的伦理、个人内在以及与沟通相关的挑战上，但很少有研究探讨PLWD家庭成员特有的挑战。
了解住院老年PLWD的家庭成员在做出护理决策时所面临的挑战。
这是一项对2020年2月至12月期间住院PLWD家庭成员进行的定性研究。从电子健康记录（EHR）中识别出年龄大于50岁且ICD编码诊断为痴呆症的住院患者以及至少一名家庭成员，并邀请他们就决策经历进行半结构化访谈。访谈进行了录音、转录，由七名研究人员采用归纳法和持续比较法进行编码。
30名家庭成员完成了对26名不同PLWD的访谈。参与者的平均年龄为62.6岁；66.7%为女性，大多数人确定为PLWD的成年子女（53.3%）或配偶（26.7%）。出现了以下主题：1）确定PLWD的生活质量，2）在痴呆症和急性住院的背景下应对不确定性，3）在进行性认知障碍的背景下将PLWD的偏好转化为高风险决策，4）与2019冠状病毒病大流行早期阶段相关的独特决策挑战。
住院PLWD的家庭成员在做出护理决策时面临痴呆症特有的挑战。需要有应对这些挑战的干预措施，以更好地支持住院PLWD的家庭成员做出这些决策。
