Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Palliat Med. 2019 Oct;33(9):1166-1175. doi: 10.1177/0269216319864777. Epub 2019 Jul 25.
The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent.
We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals.
A qualitative study was conducted: we analysed semi-structured interviews ( = 15) through the method of constant comparative analysis.
SETTING/PARTICIPANTS: We included Flemish family caregivers of persons with young-onset dementia.
Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged.
A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.
预先医疗护理计划在痴呆症中的重要性已得到广泛认可。尽管有研究表明，年轻的痴呆症患者及其家属在这方面可能有独特的需求和偏好，但目前缺乏关于年轻发病型痴呆症患者预先医疗护理计划的研究。
我们旨在探讨（1）家庭照顾者是否已经与患者和/或专业人员一起进行了预先医疗护理计划，以及伴随的原因，以及（2）家庭照顾者对与患者、家庭和专业人员理想地进行这一过程的偏好。
进行了一项定性研究：我们通过不断比较分析的方法分析了半结构化访谈（ = 15）。
地点/参与者：我们纳入了弗拉芒年轻发病型痴呆症患者的家庭照顾者。
未来的计划通常涉及非医疗事务。参与者对预先医疗护理计划的有限参与通过几个原因得到了澄清：认为它没有用，阻碍了患者的行为，采取了日常态度，照顾者在情感上保护自己，以及对患者认知能力的不确定性。然而，受访者对预先医疗护理计划的认可表明，它应该由第三方及时启动，并强调患者的剩余能力。最后，对信息和高质量护理的需求也显现出来。
知识、信息和护理的缺失相互交织，阻碍了预先医疗护理计划的实施。在年轻发病型痴呆症中，进行预先医疗护理计划的机会并不像不这样做那样平等可得。政策制定者、机构和专业人员可以思考他们在为这些患者和照顾者提供实际选择以参与或不参与预先医疗护理计划方面的责任。
