DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers

研究背景痴呆症是我们面临的最常见和最严重的疾病之一，在英国有超过80万人受到影响，每年花费230亿英镑。对痴呆症患者及其家人的负面影响是深远的。新出现的数据表明，痴呆症护理方面存在重大不平等现象，其驱动因素包括：种族、患者的护理是自费还是由地方当局支付、患者的诊断时间较早还是较晚。DETERMIND旨在解决有关痴呆症诊断后的不平等、结果和成本等关键、根本和尚未解决的问题。需要这些答案来提高护理质量，从而提高痴呆症患者及其护理人员的生活质量。目的和目标我们的总体目标是探索和了解痴呆症护理中的不平等现象，以及痴呆症患者及其护理人员在诊断后的生活质量、结果和成本的好坏因素。我们这样做是为了确定我们可以改变的事情，以改善他们的结果。我们将调查结果和成本如何随诊断内容和时间、个人情况以及不同的健康和社会护理而变化。为此，我们设计了一个包含7个互补工作流程（WS）的研究项目：WS1：招募和随访确定队列-我们将在诊断后的3个月内招募900名痴呆症患者及其护理人员，并对他们进行为期3年的密切随访，获得有关服务使用、成本和结果（包括生活质量）的高质量数据。WS2：痴呆症护理使用方面的不平等——我们将调查痴呆症护理获取方面的不平等程度、未满足的护理需求、未满足需求的影响以及解决不平等和未满足需求的障碍。WS3：服务的使用和成本与结果之间的关系-我们将调查痴呆症患者和护理人员服务的使用和成本与结果之间的关系。WS4：自筹资金的护理经验-我们将调查痴呆症患者及其家庭护理者作为自筹资金的护理经验，并将其结果和成本与理事会资助的经验进行比较。WS5：了解痴呆症患者和护理人员的决策-我们将努力了解生命计划决策发生的过程，以及影响痴呆症患者及其护理人员决策的因素。WS6：诊断阶段和服务对结果的影响-我们将调查早期或较晚诊断以及随后提供的诊断后治疗和护理对痴呆症患者及其护理人员的生活质量和其他结果的影响。WS7 -项目管理和变革理论指导的研究发展、协调和促进影响-我们将开发、组织和提供WSs，使它们协同工作，产生回答关键问题的数据，以及将其转化为更好的系统和服务所需的战略和行动，为痴呆症患者和护理人员提供服务。在项目的生命周期内，首先分析基线结果，然后对900名痴呆症患者及其护理人员进行为期3年的随访，我们将建立一个证据基础，其中目前的服务和实践主要基于断言或习俗和实践。7个WSs将提供有关痴呆症护理不平等的新颖、详细数据，以及导致痴呆症患者和护理人员产生积极和消极结果和成本的因素，以及有助于或阻碍痴呆症患者良好生活的因素。

Context of the researchDementia is one of the most common and serious disorders we face with over 800,000 affected in the UK, costing £23billion annually. Negative impacts on those with dementia and their families are profound. There are emerging data that there are major inequalities in care for dementia driven by factors that include: ethnicity, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later in the illness. DETERMIND is designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care, and therefore the quality of life, of those with dementia and their carers. Aims and objectivesOur overall aim is to explore and understand inequalities in dementia care and what drives good and bad quality of life, outcomes and costs for people with dementia and their carers following diagnosis. We do this to identify things that we can change to improve outcomes for them. We will investigate how outcomes and costs vary by content and time of diagnosis, individual circumstances, and with varying health and social care. To do this we have designed a programme of research with 7 complementary workstreams (WS):WS1: Recruitment and follow-up of the DETERMIND cohort - We will recruit 900 people with dementia and their carers in the 3 months following diagnosis and follow them up closely for 3 years obtaining high quality data on service use, costs and outcomes including quality of life.WS2: Inequalities in use of dementia care - We will investigate the extent of inequalities in access to dementia care, unmet need for care, impact of unmet need and barriers to addressing inequalities and unmet needs. WS3: Relationship between use and costs of services and outcomes - We will investigate relationships between use and costs of services and outcomes for people with dementia and carers.WS4: Experience of self-funders of care - We will investigate the experience of people with dementia and their family carers as self-funders of care and to compare this and their outcomes and costs with those the council funds.WS5: Understanding decision-making by people with dementia and carers - We will seek to understand the processes by which life-plan decision-making occurs and what influences decision-making by people with dementia and their carers.WS6: Effect of diagnostic stage and services on outcomes- We will investigate the impacts of earlier or later diagnosis and subsequent provision of post diagnostic treatment and care on quality of life and other outcomes for people with dementia and their carers.WS7 - Programme management and Theory of Change guided research development, coordination and promotion of impact - We will develop, organise and deliver the WSs so they work together to generate data that answers critical questions, and the strategy and actions needed to translate them into better systems and services for people with dementia and carers.Potential benefitsDuring the life of the programme, first analysing baseline results, and then with the follow-up of the 900 people with dementia and their carers over 3 years, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice. The 7 WSs will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and factors that help or hinder living well with dementia.