Living well with dementia

与痴呆症一起生活得很好

• 批准号: ES/L001853/2
• 负责人: Linda Clare
• 金额: $ 454.33万
• 依托单位: UNIVERSITY OF EXETER
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2015
• 资助国家: 英国
• 起止时间: 2015 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FL001853%2F2
• 关键词: Living; well; dementia

Living well with dementia, whether as a person with dementia (PwD) or primary (usually family) carer (PC), can be understood as maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life (QoL). Enabling PwD and PC to live well with dementia is a key UK policy objective, but policy recommendations do not tell us how this can be achieved. This project aims to understand what 'living well' means from the perspective of PwD and PC. It will identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia. In order to understand what 'living well' means to people with dementia and primary carers, and what influences the possibility of living well, we will find out about the things that affect the way in which people adapt to the effects of the condition and the challenges it presents, and how these things change over time. These include the assets and resources people have available, and the support they get from other people in their network. We will find out about how the way in which people respond to the challenges presented by dementia affects their ability to engage in activities and participate in the community. We will look at how all of these things relate to well-being, satisfaction with life and quality of life for PwD and PC, and how changes in assets and resources affect the possibility of 'living well' with dementia. Over a two-year period we will recruit 1500 people with early-stage dementia from all areas of the UK. We will also include a PC wherever possible, and we expect to include at least 1000 PC. We will make contact with potential participants through the local research networks that link with NHS memory services. We will visit all the participants (PwD and PC) and we will ask them to respond to questions about things that influence their life satisfaction, well-being and quality of life. This will yield numerical data that we will analyse statistically. We will visit all the participants on two more occasions, one year apart, to find out how things develop or change over time and how any changes affect their life satisfaction, well-being and quality of life. A smaller group composed of those whose ability to live well improves or declines over the first year of the study will be interviewed in more depth in years 2 and 3, and we will draw out the important themes in what they tell us and use what they say to enrich the understanding we have gained from the statistical analyses. We will involve an advisory network including PwD, PC, members of the public and representatives of the Alzheimer's Society in running the study to help make sure that it is relevant to PwD and PC and that the best possible use is made of the findings. We will use our findings to create an action plan setting out what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. We will work with policy-makers to ensure that the information we have gained will influence future policies. We will work with commissioners and providers of health services and social care services, and with practitioners in these areas, using the evidence we have gained to improve the effectiveness of services. We will engage with the general public to try to encourage a more constructive attitude towards dementia and make local communities more aware and dementia friendly. The study will be the first large-scale study of its kind and will help to develop the skills of researchers in the dementia field and stimulate new developments. It will provide a unique resource and focus for social science research in the UK and internationally.

无论是作为痴呆症患者（PwD）还是主要（通常是家庭）照顾者（PC），都可以理解为最大限度地提高生活满意度，发挥个人的福祉潜力，并体验最佳的生活质量（QoL）。使残疾人和个人电脑能够与痴呆症一起生活是英国的一个关键政策目标，但政策建议并没有告诉我们如何实现这一目标。本项目旨在从残疾人士及个人电脑的角度，了解“活得好”的意义。它将确定在患有痴呆症或照顾痴呆症患者的情况下，什么有助于人们生活得更好，什么使他们难以生活得更好。为了了解“生活得好”对痴呆症患者和主要护理人员意味着什么，以及影响生活得好的可能性的因素，我们将找出影响人们适应这种情况的方式及其带来的挑战的因素，以及这些因素如何随着时间的推移而变化。这些包括人们可用的资产和资源，以及他们从网络中其他人那里得到的支持。我们将了解人们应对痴呆症带来的挑战的方式如何影响他们参与活动和参与社区活动的能力。我们将研究所有这些因素与PwD和PC患者的幸福感、生活满意度和生活质量之间的关系，以及资产和资源的变化如何影响痴呆症患者“生活得更好”的可能性。在两年的时间里，我们将从英国各地招募1500名早期痴呆症患者。如果可能的话，我们还将包括一台PC，我们预计至少包括1000台PC。我们将通过与NHS记忆服务相关的当地研究网络与潜在的参与者联系。我们将拜访所有的参与者（残疾人士和个人电脑），并请他们回答影响他们生活满意度、幸福感和生活质量的问题。这将产生数字数据，我们将对其进行统计分析。我们将在一年的时间里再访问两次所有的参与者，以了解事情是如何随着时间的推移而发展或变化的，以及这些变化是如何影响他们的生活满意度、幸福感和生活质量的。由那些在研究的第一年生活能力提高或下降的人组成的一个较小的小组将在第2年和第3年进行更深入的采访，我们将从他们告诉我们的内容中得出重要的主题，并利用他们所说的来丰富我们从统计分析中获得的理解。我们会由一个包括残疾人士、个人电脑、市民及阿尔茨海默氏症学会代表在内的谘询网络来进行这项研究，以确保研究与残疾人士及个人电脑有关，并尽可能善用研究结果。我们将利用我们的研究结果制定一个行动计划，列出个人、社区、卫生和社会护理从业人员、护理提供者和政策制定者可以做些什么，以提高痴呆症患者生活得更好的可能性。我们将与决策者合作，确保我们获得的信息将影响未来的政策。我们将与保健服务和社会护理服务的专员和提供者以及这些领域的从业人员合作，利用我们获得的证据提高服务的效力。我们将与公众接触，努力鼓励对痴呆症采取更具建设性的态度，并使当地社区对痴呆症有更多的认识和友好。这项研究将是同类研究中的第一次大规模研究，将有助于发展痴呆症领域研究人员的技能，并刺激新的发展。它将为英国和国际社会科学研究提供独特的资源和重点。

项目成果

Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme.

对疾病的认识是否有助于患有轻度至中度痴呆的人的生活良好？理想计划的发现。

• DOI: 10.1186/s12877-021-02468-4
• 发表时间: 2021-09-25
• 期刊: BMC geriatrics
• 影响因子: 4.1
• 作者: Alexander CM;Martyr A;Gamble LD;Savage SA;Quinn C;Morris RG;Collins R;Clare L;IDEAL programme research team
• 通讯作者: IDEAL programme research team

Changes in awareness of condition in people with mild-to-moderate dementia: Longitudinal findings from the IDEAL cohort.

• DOI: 10.1002/gps.5702
• 发表时间: 2022-04
• 期刊: INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY
• 影响因子: 4
• 作者: Alexander, Catherine M.;Martyr, Anthony;Clare, Linda
• 通讯作者: Clare, Linda

Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia Is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort.

• DOI: 10.3233/jad-200407
• 发表时间: 2020
• 期刊: Journal of Alzheimer's disease : JAD
• 作者: Clare L;Martyr A;Morris RG;Tippett LJ
• 通讯作者: Tippett LJ

Doing dementia differently: A range of co-produced resources from the IDEAL programme

以不同的方式治疗痴呆症：IDEAL 计划共同制作的一系列资源

• DOI: 10.53841/bpsfpop.2024.1.165.23
• 发表时间: 2024
• 期刊: Psychology of Older People
• 作者: Charlwood C

A Grand Day Out

美好的一天

• 发表时间: 2018
• 作者: Beesley, I