Division of Geriatrics, University of California, San Francisco, San Francisco, CA, USA.
Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, CA, USA.
J Alzheimers Dis. 2022;90(3):1301-1320. doi: 10.3233/JAD-220536.
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 disease 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 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.
在美国，与卓越研究中心相关联的痴呆症专科中心有望成为在原本受学科或支付方限制的护理系统中发展创新的整体护理的场所。
我们进行了基础研究，为痴呆症专科中心开发以患者和家属为中心的姑息治疗干预措施提供信息。
我们采访了从专门的痴呆症诊所招募的患有痴呆症的患者（PLWD）、当前和以前的护理伙伴（CP），他们根据疾病综合征和阶段的不同进行了有针对性的选择。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 名当前 CP 和 15 名已故 CP 的前 CP；48%受阿尔茨海默病性痴呆影响。虽然家庭、支持团体和成人日间中心、有偿护理、以及敏感的临床护理对 PLWD、CP 或两者都非常有价值，但这些支持不足以应对广泛的挑战。以疾病为导向的困扰源包括症状、功能障碍和跌倒、不确定性和丧失，以及无法获得护理。社会和关系方面的挑战包括个人和职业机会受限。给予或接受护理的义务和代价具有挑战性。PLWD 和/或 CP 的临床护理挑战包括护理碎片化、缺乏指导以告知规划以及在家中需要专家跨学科临床护理。
研究结果突出了差距的广度和严重性，这些差距超出了行为神经学或姑息治疗的单一学科重点。结果可以为开发新的干预措施提供信息，将老年病学和神经姑息治疗的原则纳入痴呆症护理。
