"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.
"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.
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DOI：
10.3233/jad-220536
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发表时间：
2022
影响因子：
4
通讯作者：
Ritchie, Christine S.
中科院分区：
文献类型：
--
作者：
Harrison, Krista L.;Garrett, Sarah B.;Halim, Madina;Sideman, Alissa Bernstein;Allison, Theresa A.;Dohan, Daniel;Naasan, Georges;Miller, Bruce L.;Smith, Alexander K.;Ritchie, Christine S.
在美国，与卓越研究中心附属的痴呆症专科中心有望成为在护理系统中开发创新的整体护理的场所，否则将受到学科或付款人的孤立。我们进行了基础研究，为痴呆专科中心以患者和家庭为中心的姑息治疗干预措施的发展提供信息。我们采访了痴呆症患者（PLWD），现任和前任护理伙伴（CP），他们是从一家专业痴呆症诊所招募的，并有目的地选择了疾病综合征和阶段的变化。主题分析的框架方法包括编码、分析矩阵和模式映射。40名参与者包括9名PLWD，16名现任CP和15名死者的前CP; 48%受阿尔茨海默氏痴呆症影响。虽然来自家庭、支持团体和成人日托中心的帮助、有偿服务和敏感的临床护理对PLWD、CP或两者都非常宝贵，但这些支持不足以应对广泛的挑战。以疾病为导向的痛苦来源包括症状、功能障碍和福尔斯、不确定性和丧失以及无法获得护理。社会和关系的挑战，PLWD和/或CP包括限制个人和专业机会。给予或接受祝福的义务和代价是具有挑战性的。PLWD和/或CP的临床护理挑战包括护理碎片化，指导不足，以告知计划和需要在家中进行专业的跨学科临床护理。研究结果突出了差距的广度和严重性，超越了行为神经学或姑息治疗的学科重点。研究结果可以为开发新的干预措施提供信息，以将老年医学和神经姑息治疗的原则添加到痴呆症护理中。
In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer’s dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges for PLWD and/or CPs included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.