Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK.
NIHR Applied Research Collaboration North West Coast, Liverpool, UK.
Int J Geriatr Psychiatry. 2024 May;39(5):e6096. doi: 10.1002/gps.6096.
Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these.
We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations.
Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location.
These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.
被诊断患有痴呆症并不等同于能够公平地获得护理。痴呆症患者和无偿照顾者在获得护理方面面临许多障碍，这些障碍在不同的国家和文化中有所不同。由于不同国家的证据有限，本次范围界定研究的目的是确定欧洲各国在痴呆症方面存在的不同和相似类型的不平等现象，并提出解决这些问题的建议。
我们于 2023 年 2 月至 3 月期间，在欧洲范围内通过 INTERDEM 和 INTERDEM 学院的成员，以及 Alzheimer Europe 的欧洲痴呆症患者和照顾者工作组的成员，开展了一项简短的在线调查。成员们被问及他们所在国家是否存在痴呆症护理方面的不平等现象；如果是，突出三个关键的不平等现象。对障碍的回应被编入了不同的组别，不平等现象的频率被计算出来。在英格兰、爱尔兰、意大利和波兰举行的面对面和虚拟共识会议上，讨论了突出的不平等现象，并根据重要性对其进行了排序，这些会议涉及痴呆症患者、无偿照顾者、卫生和社会保健提供者以及非营利组织。
来自 10 个国家（比利时、丹麦、德国、希腊、爱尔兰、意大利、波兰、马耳他、荷兰、英国）的 49 名学者、博士生、痴呆症患者和无偿照顾者完成了这项调查。最常被确定的不平等现象集中在缺乏意识和信息、更高层次的系统问题（即护理专业人员之间缺乏沟通）、服务不适合、以及耻辱感。其他障碍包括劳动力培训和知识、经济成本、文化和语言、缺乏单一联络点、年龄和居住地/邮政编码彩票。不同欧洲国家的痴呆症患者和照顾者普遍认为缺乏意识是一个关键障碍，而爱尔兰的优先事项则因地理位置而异。
这些发现提供了欧洲范围内痴呆症不平等现象的初步见解，为如何解决欧洲各国的痴呆症不平等现象提供了跨国学习经验，并可以为进一步以解决方案为重点的研究提供信息，这些研究可以为政策和关键决策者提供信息，以实施变革。
