Comprehensive approach to modelling outcome and cost impacts of interventions for dementia

痴呆症对患者、他们的家人和其他照顾他们的人的健康和生活质量有巨大的影响。许多痴呆症患者在生活的许多领域都需要护理，他们使用一系列的医疗和社会护理服务，并从无偿照顾者那里获得支持。许多痴呆症患者最终会搬进养老院。因此，照顾痴呆症患者的成本可能很高。随着未来几十年英国人口老龄化，痴呆症患者的数量将大幅增加。英国面临的一大挑战是如何以他们可以接受的方式和社会认为负担得起的成本为这些人提供高质量的治疗和支持。在英格兰，护理和支持安排以国家痴呆症战略为指导；苏格兰、威尔士和北爱尔兰也有类似的承诺。去年，首相宣布了他个人对痴呆症的“挑战”。痴呆症现在正受到前所未有的关注：这是政府、NHS和地方议会的高度优先事项。我们的研究将为这场全国性的辩论提供新的证据，帮助卫生和社会护理系统的多个层面的决策者以最佳利用国家资源的方式满足痴呆症患者及其照顾者的需求和回应他们的偏好。我们将检查现有数据，以更清楚地了解一些因素之间的联系：个人和家庭的特征，他们与痴呆症相关的其他护理和支持需求，以及他们可以获得的服务和治疗。我们将研究护理、支持和治疗对个人和照顾者结果的影响--这些干预措施如何改善他们的健康和福祉--以及支持的成本。根据这些信息，我们将首先预测到2040年期间将有多少痴呆症患者，他们可能获得哪些家庭或其他无偿支持，以及提供护理服务的成本。第二，我们将研究是否有更好的方法，通过引入新的护理和治疗形式来支持痴呆症患者和他们的照顾者。对于这一部分的研究，我们将依赖于之前的研究，这些研究已经检验了这些干预措施是否改善了健康和福祉，以及成本是多少。我们将通过回顾以前关于痴呆症护理和治疗的研究(以及审查预防或推迟痴呆症的方法)来确定这些“新方法”。我们将寻找有关药物、认知刺激和其他疗法、锻炼计划、营养建议、远程护理、社区倡议、休息和护理人员培训等方面的证据。我们将收集300名痴呆症患者及其护理人员在12个月内两个时间点的生活、需求和护理的新数据。我们不会对这些人进行任何干预测试。相反，我们需要信息来帮助我们最大限度地利用我们可以从以前的研究中获得的数据。我们还将进行访谈，并建立焦点小组，以便我们能够获得经验证据，包括人们偏好的信息。我们将把所有这些证据结合在一起，模拟如果在未来几十年里，对痴呆症患者和/或他们的护理人员有效的干预措施在全国范围内得到更广泛的采用，可能会发生什么。我们特别感兴趣的是经济影响：如何在改善健康和福祉的同时降低未来的医疗成本。我们将开发一个公开可用的工具(可通过网络访问)，使专员、提供者、慈善机构、个人和家庭能够使用我们的证据，根据对人口需求、服务和治疗的不同假设，预测未来的成本。我们将在项目的所有阶段与痴呆症患者、照顾者和我们研究的其他潜在用户合作。

Dementia has enormous impacts on health and quality of life for people with the illness, their families and other people who care for them. Many people with dementia need care in many areas of their lives, and use a range of health and social care services, as well as getting support from their unpaid carers. Many people with dementia eventually move into care homes. The costs of caring for people with dementia can therefore be high. As the UK population ages over the coming decades, the number of people with dementia will increase considerably. A big challenge facing the country is how to provide high-quality treatment and support to these individuals in ways that are acceptable to them and at a cost considered by society to be affordable.In England, care and support arrangements are guided by the National Dementia Strategy; there are similar commitments in Scotland, Wales and Northern Ireland. Last year the Prime Minister announced his personal 'Challenge' on dementia. Dementia is now getting unprecedented attention: it is a high priority for government, the NHS and local councils. Our research will feed new evidence into this national debate to help decision-makers at many levels in health and social care systems to meet the needs and respond to the preferences of people with dementia and their carers in ways that make best use of the country's resources.We will examine existing data to get a clearer understanding of the links between a number of factors: the characteristics of individuals and families, their dementia-related and other needs for care and support, and the services and treatments that could be available to them. We will look at the effects of care, support and treatments on outcomes for individuals and carers - how those interventions can improve their health and wellbeing - and also on the costs of support.With this information we will first make projections of how many people there will be with dementia over the period to 2040, what family or other unpaid support they are likely to have available, and what it will cost to provide care services. Second, we will examine whether there are better ways to support people with dementia and their carers by introducing new forms of care and treatment. For this part of the research we will rely on previous studies that have examined whether these interventions improve health and wellbeing, and at what cost. We will identify those 'new ways' by reviewing previous studies of dementia care and treatment (and also reviewing ways to prevent or delay dementia). We will look for evidence on, e.g., medications, cognitive stimulation and other therapies, exercise programmes, nutrition advice, telecare, community initiatives, respite and training for carers.We will collect new data from 300 people with dementia and their carers, looking at their lives, needs and care at two time points over 12 months. We will not be testing any interventions with these people. Instead we need information to help make the best use of data that we can draw from previous studies. We will also conduct interviews and set up focus groups so that we can get 'experiential' evidence, including information on people's preferences.We will pull all this evidence together to simulate what would be likely to happen if interventions with proven benefits for people with dementia and/or their carers were more widely adopted nationally over the coming decades. We are particularly interested in the economic implications: how the future costs of care might be reduced while health and wellbeing are improved.We will develop a publicly available tool (accessible via the Web) to enable commissioners, providers, charities, individuals and families to use our evidence to make projections of future costs under different assumptions about population needs, services and treatments. We will work with people with dementia, carers and other potential users of our research at all stages of the project.