摘要
【ABSTRACT】【Background】One in three older adults in the United States dies with or from dementia. Little is known about whether end‐of‐life caregiving experiences differ by dementia diagnosis.【Methods】We conducted a secondary analysis of two qualitative studies. Participants included caregivers of decedents with “rapid‐type” sporadic Creutzfeldt–Jakob Disease (sCJD, survival prognosis of < 1 year) or “slow‐type” Alzheimer's disease and related dementias (survival prognosis of 5–20 years). We used reflexive thematic analysis and a novel method, poetic analysis, to compare end‐of‐life caregiving experiences.【Results】“Rapid‐type” caregivers (n = 12) had a median age of 59 (range 45–73) years; 6 were female, and 9 were spouses. “Slow‐type” caregivers (n = 15) had a median age of 69 (45–82) years; 9 were female, and 11 were spouses. We identified three main areas of differential experience that were influenced by syndrome rarity and participation in research yet hinged on time. Time enables preparation: Due to the rarity of sCJD, “rapid‐type” caregivers struggled to obtain accurate diagnoses, which prevented preparation for end‐of‐life care. Weeks or months before death, specialists simultaneously disclosed sCJD diagnoses and recommended hospice. In contrast, for “slow‐type” dementia, preparation began years before death. Time complicates conflict: Most “rapid‐type” caregivers described conflicts, rarely resolved before death, about code status, treatment, or care location decisions. Fewer “slow‐type” caregivers experienced such conflicts, and these were typically resolved before death; instead, they experienced conflict between needs and what the care system provides. Postmortem experience contrasts with perimortem: For “rapid‐type” dementia, short perimortem periods contrasted with elongated and often intense postmortem logistics and grief. For “slow‐type” caregivers, preparation and perimortem grieving typically led to shorter duration and minimally intrusive postmortem logistics and grief.【Conclusions】End‐of‐life care for dementia should attend to and support axes of differential experience based on diagnosis and rarity, time since symptom onset (affecting preparation and conflict resolution), and participation in research studies.
摘要译文
【摘要】【背景】美国三分之一的老年人死于痴呆症或痴呆症。关于痴呆症诊断的末期护理经历是否有所不同。参与者包括患有“快速型”散发性克鲁特兹菲尔德– jakob疾病（SCJD，<1年的生存预后）或“慢型”阿尔茨海默氏病（5-20年的生存预后）的看护人。我们使用了反身主题分析和一种新颖的方法，即诗意分析，比较了末世的护理经验。结果【结果】“快速型”护理人员（n = 12）的中位年龄为59岁（范围45-73）年；6个是女性，有9名是配偶。“慢型”护理人员（n = 15）的中位年龄为69（45-82）岁；9名是女性，11个是配偶。我们确定了受综合征稀有性和参与研究尚未准时的研究影响的三个主要领域。时间实现了准备：由于SCJD的罕见性，“快速类型”的护理人员努力获得准确的诊断，这阻止了为末期护理的准备。死亡前几周或几个月，专家同时披露了SCJD诊断并推荐临终关怀。相比之下，对于“慢型”痴呆症，准备在死亡前几年开始。时间使冲突复杂化：大多数“快速型”护理人员描述了冲突，在死亡之前很少解决，关于代码状况，治疗或护理位置决策。较少的“慢型”护理人员遇到了这种冲突，这些冲突通常在死亡前得到解决。相反，他们经历了需求与护理系统提供的冲突。验尸经历与围绕的经验形成鲜明对比：对于“快速型”痴呆症，短暂的围绕时期与细长且经常强烈的后物流和悲伤形成鲜明对比。对于“慢型”护理人员，准备和痛苦通常导致持续时间较短，最低限制的术后物流和悲伤。
Krista L. Harrison (https://orcid.org/0000-0001-5373-3011) [1];Brianna E. Morgan (https://orcid.org/0000-0001-6717-0520) [2];Juliana Friend [3];Sarah B. Garrett [4];David Looi [5];Madina Halim [6];Jennifer E. James [7];Nicole D. Boyd [8];Joni Gilissen [9];Michael D. Geschwind [10];Christine S. Ritchie [11];Alexander K. Smith [12];. “By the Time We Knew …”: Poetic Analysis of End‐of‐Life Caregiving Experiences for Rapidly Progressive and Slower‐Duration Dementia Syndromes[J]. Journal of the American Geriatrics Society, 2025,73(5): 1406-1418