Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork, Ireland.
School of Nursing and Midwifery, University College Cork, Cork, Ireland.
BMC Geriatr. 2023 Oct 19;23(1):677. doi: 10.1186/s12877-023-04343-w.
Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned.
A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services.
The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place.
An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.
患有绝症的人受益于姑息治疗，该治疗考虑了患者及其家人的整体需求。然而，对于如何在社区中为患有痴呆症的人在家中提供最佳姑息治疗知之甚少。我们研究了社区中患有痴呆症的人的四个示范性痴呆症姑息治疗服务，以了解它们提供了哪些活动，它们有哪些共同点和不同点，以及可以从中吸取哪些经验教训。
通过调查确定了爱尔兰、北爱尔兰、英格兰、苏格兰和威尔士的一份长名单的痴呆症姑息治疗服务，然后根据以下标准选择了四个示范性服务：运营时间超过六个月；提供可识别的活动；提供常规收集的服务数据；不仅仅为生命最后几小时或几天的痴呆症患者提供服务。数据收集的混合方法包括对服务人员进行访谈、焦点小组和调查，对服务使用者进行调查，以及常规收集服务数据。使用 RE-AIM 框架来描述和理解所选的痴呆症姑息治疗服务样本。
这四个服务具有不同的组织结构，由不同的学科领导。然而，它们都提供了常见的核心活动，包括全面和以患者为中心的护理、早期有患者参与的预先护理计划、照顾者支持、综合医疗保健服务、连续性护理、24/7 支持、丧亲支持。所有服务都有基于需求的转诊标准，接受任何年龄或痴呆症亚型的患者。所有服务都支持痴呆症患者在家中生活，并在他们喜欢的地方舒适、有尊严地离世。
有效的痴呆症姑息治疗服务可能有不同的形式。无论服务是由痴呆症主导还是由专业姑息治疗主导，疗效都与提供一系列关键活动并有效地实施这些活动有关。收集的数据强烈表明，这些痴呆症姑息治疗服务对患者及其家人都有好处，并为这些服务的建立和成功运行提供了有价值的见解。
