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

决定：痴呆症患者及其家庭照顾者的生活质量、护理和费用以及不平等后果的决定因素

• 批准号: ES/S010351/1
• 负责人: Sube Banerjee
• 金额: $ 534.52万
• 依托单位: University of Sussex
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2019
• 资助国家: 英国
• 起止时间: 2019 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FS010351%2F1
• 关键词: DETERMIND; DETERMinants; quality; life; care

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.

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，在痴呆症的护理方面存在严重的不平等，原因包括：种族，你的护理是自筹资金还是由地方当局支付，以及你是在疾病的早期还是后期被诊断出来。Desid旨在解决诊断为痴呆症后的不平等、结果和成本等关键、根本和尚未得到回答的问题。需要这些答案来提高护理质量，从而提高痴呆症患者及其照顾者的生活质量。目的和目的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，以及是什么因素导致痴呆症患者及其照顾者在确诊后的生活质量、结果和成本的好坏。我们这样做是为了确定我们可以改变的事情，以改善它们的结果。我们将调查结果和成本如何因诊断内容和时间、个人情况以及不同的医疗和社会保健而变化。为此，我们设计了一个有7个补充工作流程(WS)的研究方案：WS1：招募和跟踪确定队列--我们将在确诊后的3个月内招募900名痴呆症患者及其照顾者，并对他们进行为期3年的密切跟踪，以获得关于服务使用、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--我们将调查在获得痴呆症护理方面的不平等程度、未得到满足的护理需求、未得到满足的需求的影响以及解决不平等和未得到满足的需求的障碍。WS3：服务和结果的使用与成本之间的关系--我们将调查痴呆症患者和照顾者的服务和结果的使用、成本和结果之间的关系。WS4：自筹护理的经历-我们将调查痴呆症患者及其家庭照顾者作为自筹照护者的经历，并将这一点及其结果和成本与理事会资助的人进行比较。WS5：了解痴呆症患者和照顾者的决策--我们将努力了解痴呆症患者和他们的照顾者做出人生计划决策的过程，以及是什么影响了痴呆症患者和他们的照顾者的决策。诊断阶段和服务对结果的影响-我们将调查早期或晚期诊断以及随后提供诊断后治疗和护理对痴呆症患者及其照顾者的生活质量和其他结果的影响。WS7-方案管理和变革理论指导研究发展，协调和促进影响力-我们将开发、组织和交付WSS，以便他们共同生成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更好的系统和服务。潜在好处在计划的生命周期中，首先分析基线结果，然后通过对900名痴呆症患者及其护理人员3年多的跟踪调查，我们将建立一个证据基础，其中服务和实践目前主要基于断言或习俗和实践。7个WSS将提供关于痴呆症护理中的不平等、是什么推动了痴呆症患者和照顾者的积极和消极结果和成本的新的、详细的数据，以及帮助或阻碍痴呆症患者良好生活的因素。

项目成果

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

• DOI: 10.1177/14713012231173812
• 发表时间: 2023-08
• 期刊: Dementia (London, England)
• 作者: Colclough C;Miles E;Rusted J;Perach R;Hicks B;Dixon J;Dangoor M;Gridley K;Birks Y;Donaghy P;Mcardle R;Moseley E;Sondh HK;Banerjee S;DETERMIND team
• 通讯作者: DETERMIND team

'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.

“反击”：英国新诊断出的痴呆症患者及其对 Covid-19 大流行限制的经历。

• DOI: 10.1002/gps.5803
• 发表时间: 2022-10
• 期刊: International journal of geriatric psychiatry
• 影响因子: 4
• 作者: Dixon J;Hicks B;Gridley K;Perach R;Baxter K;Birks Y;Colclough C;Storey B;Russell A;Karim A;Tipping E;Banerjee S;DETERMIND team
• 通讯作者: DETERMIND team

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

• DOI: 10.1177/14713012231190585
• 发表时间: 2023-11
• 期刊: DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE
• 影响因子: 2.4
• 作者: Gridley, Kate;Dixon, Josie;Hicks, Ben;Birks, Yvonne;Baxter, Kate;Miles, Eleanor;Robinson, Louise;Perach, Rotem;Banerjee, Sube
• 通讯作者: Banerjee, Sube

Ageing, Men and Social Relations - New Perspectives on Masculinities and Men's Social Connections in Later Life

老龄化、男性和社会关系——男性气质和男性晚年社会关系的新视角

• DOI: 10.56687/9781447363088-016
• 发表时间: 2023
• 作者: Hicks B

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

• DOI: 10.1002/trc2.12236
• 发表时间: 2022
• 期刊: ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS
• 影响因子: 4.8
• 作者: Hicks, Ben;Read, Sanna;Hu, Bo;Wittenberg, Raphael;Grahamslaw, Amanda;Karim, Anomita;Martin, Evelyn;Nuzum, Eleanor;Reichental, Jacob;Russell, Alice;Siddle, Elaine;Storey, Bryony;Tipping, Eva;Baxter, Kate;Birks, Yvonne;Brayne, Carol;Brimblecombe, Nicola;Dangoor, Margaret;Dixon, Josie;Gridley, Kate;Harris, Peter R;Knapp, Martin;Miles, Eleanor;Perach, Rotem;Robinson, Louise;Rusted, Jennifer;Stewart, Rob;Thomas, Alan J;Banerjee, Sube
• 通讯作者: Banerjee, Sube