End-of-life care and the effects of bereavement on family caregivers of persons with dementia
End-of-life care and the effects of bereavement on family caregivers of persons with dementia
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DOI：
10.1056/nejmsa035373
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发表时间：
2003-11-13
影响因子：
158.5
通讯作者：
Belle, SH
中科院分区：
文献类型：
--
作者：
Schulz, R;Mendelsohn, AB;Belle, SH
背景：虽然家庭照护在过去十年中得到了深入研究，但很少有人关注临终关怀对痴呆症患者家庭成员照护者的影响或照护者对患者死亡的反应。方法：使用标准化评估工具和结构化问题，我们评估了 217 名家庭照护者在患者死亡前一年向痴呆症患者提供的照护类型和强度，并评估了照护者对患者死亡的反应。结果：一半的护理人员表示每周至少花费 46 小时协助患者进行日常生活活动和日常生活的工具性活动。超过一半的护理人员表示，他们感觉自己每天 24 小时“值班”，患者经常感到疼痛，并且由于护理需求，他们不得不终止或减少工作。照顾者在照顾患有痴呆症的亲属时表现出高度的抑郁症状，但他们在死后表现出非凡的恢复力。在死亡后三个月内，护理人员的抑郁症状水平在临床上显着下降，并且在一年内，症状水平大大低于他们担任护理人员时报告的水平。 72% 的护理人员表示，死亡对他们来说是一种解脱，超过 90% 的护理人员表示认为这对患者来说是一种解脱。结论：痴呆症患者的临终护理对家庭护理人员的要求极高。患者死亡前最需要干预和支持服务。当死亡之前经历了一段漫长而紧张的护理期时，护理人员报告说，死亡本身让他们松了一口气。
Background: Although family caregiving has been intensively studied in the past decade, little attention has been paid to the impact of end-of-life care on caregivers who are family members of persons with dementia or to the caregivers' responses to the death of the patient.Methods: Using standardized assessment instruments and structured questions, we assessed the type and intensity of care provided by 217 family caregivers to persons with dementia during the year before the patient's death and assessed the caregivers' responses to the death.Results: Half the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living and instrumental activities of daily living. More than half the caregivers reported that they felt they were ``on duty'' 24 hours a day, that the patient had frequent pain, and that they had had to end or reduce employment owing to the demands of caregiving. Caregivers exhibited high levels of depressive symptoms while providing care to the relative with dementia, but they showed remarkable resilience after the death. Within three months of the death, caregivers had clinically significant declines in the level of depressive symptoms, and within one year the levels of symptoms were substantially lower than levels reported while they were acting as caregivers. Seventy-two percent of caregivers reported that the death was a relief to them, and more than 90 percent reported belief that it was a relief to the patient.Conclusions: End-of-life care for patients with dementia was extremely demanding of family caregivers. Intervention and support services were needed most before the patient's death. When death was preceded by a protracted and stressful period of caregiving, caregivers reported considerable relief at the death itself.