Department of Neurology, 12233University of Florida College of Medicine, Gainesville, FL, USA.
McKnight Brain Institute, University of Florida, Gainesville, FL, USA.
Dementia (London). 2022 Jan;21(1):287-303. doi: 10.1177/14713012211038428. Epub 2021 Aug 2.
Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care-from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.
具有路易体痴呆（DLB）的个体通常死于与痴呆相关的原因，但对于 DLB 患者生命末期的护理人员体验知之甚少。鉴于痴呆患者的非正式护理频率很高、DLB 患者的护理人员负担很重，以及大多数 DLB 患者死于这种疾病，这反映了一个关键的知识差距。研究人员对过去 5 年内死于 DLB 的个体的家属进行了电话访谈。研究人员采用定性描述方法分析访谈记录。参与者包括 15 名子女、13 名配偶和 2 名其他家庭成员。访谈平均时长为 31 分钟。主要主题包括护理人员在整个疾病过程中和生命末期是 DLB 患者护理的主要推动者，DLB 特征（例如波动、幻觉和妄想）对生命末期体验的影响，与护理角色相关的体验、死亡和死后体验，以及护理人员在生命末期使用的支持。DLB 患者护理人员的生命末期体验是建立在疾病过程中累积负担的基础上的，护理人员通常负责推动 DLB 护理，从做出诊断到教育医疗保健专业人员和反复检查医疗决策。虽然一些生命末期体验与一般痴呆姑息治疗中描述的体验一致（例如经济压力、睡眠不佳、不堪重负、需要更多教育和支持），但许多 DLB 特征特别影响生命末期护理人员的体验，例如妄想的存在。要改善 DLB 患者生命末期的护理人员体验，需要在整个疾病过程中改善对 DLB 患者的诊断和护理，还需要更好的治疗行为症状的策略。需要更多的研究来了解影响 DLB 患者及其家属的高质量生命末期体验的驱动因素，以及驱动因素和策略在不同痴呆症之间可能存在的差异。
