Sadowska Karolina, Turnwald Molly, O'Neil Thomas, Maust Donovan T, Gerlach Lauren B
Weill Cornell Medical College, New York, New York, USA.
Department of Psychiatry, University of Michigan, Ann Arbor, Michigan, USA.
J Am Geriatr Soc. 2025 Apr;73(4):1094-1104. doi: 10.1111/jgs.19320. Epub 2024 Dec 16.
Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end-of-life care and caregiver burden.
This qualitative study involved semi-structured interviews with prescribing hospice clinicians and caregivers of patients living with dementia who previously received hospice services. Interviews included questions regarding common behavioral symptoms observed at end of life, side effects of benzodiazepine and antipsychotic medications, perceived effectiveness of medications used, and non-pharmacologic treatment strategies. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major themes.
A total of 23 hospice clinicians and 20 family caregivers participated in interviews. Agitation, including physical and verbal aggression, irritability, and anger, was identified as the most concerning behavioral symptom of dementia at end of life; when discussing agitation, clinicians focused on the safety of the patient living with dementia and others, while caregivers were concerned because they perceived it as a change in personality of their loved one. When using antipsychotics and benzodiazepines to address behavioral symptoms, caregivers viewed sedation as a concerning side effect, while clinicians were less concerned and noted this as an anticipated outcome of treatment. Overall, family caregivers perceived medications as more effective than clinicians. Finally, non-pharmacologic interventions are generally preferred over pharmacologic treatments, but were reported as difficult to implement.
Study findings can help to inform dialogue between hospice clinicians and caregivers regarding anticipated behavioral changes, as well as risks, benefits, and limitations of medication treatment options for behavioral symptom management. Further work is needed to understand the appropriate level of use of psychotropic medications for end-of-life dementia care.
痴呆症影响着每三名85岁以上的老年人中的一名，患有痴呆症的人是进入临终关怀护理的患者中增长最快的群体。虽然认知障碍是痴呆症的标志，但几乎所有晚期痴呆症患者都有行为症状，这增加了临终护理的复杂性和护理人员的负担。
这项定性研究包括对开具临终关怀处方的临床医生和曾接受临终关怀服务的痴呆症患者的护理人员进行半结构化访谈。访谈问题包括关于临终时观察到的常见行为症状、苯二氮䓬类药物和抗精神病药物的副作用、所用药物的感知疗效以及非药物治疗策略。对录音访谈的数据进行转录、编码以识别相关概念，并进行归纳以确定主要主题。
共有23名临终关怀临床医生和20名家庭护理人员参与了访谈。激越，包括身体和言语攻击、易怒和愤怒，被确定为痴呆症患者临终时最令人担忧的行为症状；在讨论激越时，临床医生关注痴呆症患者及他人的安全，而护理人员则感到担忧，因为他们将其视为亲人性格的改变。在使用抗精神病药物和苯二氮䓬类药物来解决行为症状时，护理人员将镇静视为一个令人担忧的副作用，而临床医生则不太担心，并指出这是治疗的预期结果。总体而言，家庭护理人员认为药物比临床医生认为的更有效。最后，非药物干预通常比药物治疗更受青睐，但据报告实施起来很困难。
研究结果有助于为临终关怀临床医生和护理人员之间关于预期行为变化以及行为症状管理的药物治疗选择的风险、益处和局限性的对话提供信息。需要进一步开展工作，以了解在临终痴呆症护理中精神药物的适当使用水平。
