Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore; Program in Health Services and Systems Research, Duke-NUS Medical School, Singapore.
Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.
J Pain Symptom Manage. 2021 Jul;62(1):20-27.e2. doi: 10.1016/j.jpainsymman.2020.11.021. Epub 2020 Nov 25.
Dementia involves suffering. Assessing the experience of suffering among persons with severe dementia is instrumental to delivering quality end-of-life care to them and their caregivers.
We aimed to assess dimensions of suffering from the perspective of family caregivers and the resulting impact on their decisions for the care of persons with severe dementia.
Between July 2018 and February 2019, we conducted qualitative in-depth interviews with 27 family caregivers of community-dwelling persons with severe dementia with Functional Assessment Staging Test staging 7. We asked caregivers if they perceived persons with severe dementia to be suffering and explored reasons for their perceptions. We analyzed data using principles of reflexive thematic analysis.
We conceptualized five dimensions of suffering among persons with severe dementia from the perspective of their caregivers: 1) untreated physical or behavioral symptoms, 2) emotional pain, 3) loss of agency, 4) loss of engagement with society, and 5) loss of personhood. Suffering among persons with severe dementia influences their caregivers' expression of a wish for their death and caregivers' decision regarding the use of life-prolonging interventions for them.
Findings suggest that suffering among persons with severe dementia can occur independent of physical symptoms and requires provision of person-centered care. The study adds to the understanding of end-of-life care in persons with severe dementia and their caregivers.
痴呆涉及痛苦。评估严重痴呆患者的痛苦体验对于为他们及其护理人员提供高质量的临终关怀至关重要。
我们旨在从家庭护理者的角度评估痛苦的各个方面，以及这些痛苦对他们照顾严重痴呆患者的决策所产生的影响。
在 2018 年 7 月至 2019 年 2 月期间，我们对 27 名居住在社区的严重痴呆患者（功能性评估分期测试分期 7 级）的家庭护理者进行了定性深入访谈。我们询问护理者是否认为严重痴呆患者正在遭受痛苦，并探讨了他们产生这种看法的原因。我们使用反思性主题分析的原则对数据进行了分析。
我们从护理者的角度，将严重痴呆患者的痛苦分为五个维度：1）未治疗的身体或行为症状；2）情绪痛苦；3）丧失自主性；4）丧失与社会的联系；5）丧失人格。严重痴呆患者的痛苦会影响他们的护理者表达希望他们死亡的愿望，以及护理者对他们使用延长生命干预措施的决定。
研究结果表明，严重痴呆患者的痛苦可能独立于身体症状发生，需要提供以患者为中心的护理。该研究增加了对严重痴呆患者及其护理者临终关怀的理解。
