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Research highlights what helps people live well with dementia

New research has identified the factors that enable people with dementia and their carers to live as well as possible.

Led by the University of Exeter, the research seeks to inform support services and guide policy on where resources should be spent to support the 50 million people worldwide that have been diagnosed with a dementia to optimise their ability to 'live well'.

Now, a large-scale study has produced two new papers published in Alzheimer Disease & Associated Disorders. A wide range of factors were found to play a role in living well. The team found that psychological aspects, such as optimism, self-esteem and whether they encountered loneliness and depression was closely linked to the ability to optimise quality of life and wellbeing in both people with dementia and carers. Experience in other areas of life influences psychological well-being and perceptions of living well. Physical health and fitness was important for both groups. For both carers and people with dementia social activity and interaction also ranked highly. 

For people with dementia, their social situation and their ability to manage everyday life were important factors. 

Carers rated their caregiving experience, and whether they felt trapped or isolated, as a key indicator in whether they could live well. 

The research was conducted in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, funded by the National Institute for Health Research and the Economic and Social Research Council. The study comprised 1,547 people diagnosed with mild to moderate dementia and 1283 carers. Both groups of participants provided ratings of their quality of life, satisfaction with life and wellbeing, in relation to dementia and to overall health. 

The research team combined the findings into one overall 'living well' score for people with dementia, and one for carers. 

Lead author Professor Linda Clare, of the University of Exeter, who also leads the IDEAL study, said: "It's so important to find ways for the 50 million people worldwide who have dementia to live as well as possible. Our research sheds new light on what factors play a key role in maximising factors such as wellbeing and quality of life. This must now translate into better ways to support people with dementia."

Co-author Dr Anthony Martyr, of the University of Exeter, said: "Our research gives more specific guidance on where we should focus efforts to help people live as well as possible with dementia. For example, looking at how we can help people with dementia to avoid depression or stay physically and socially active. For carers it could involve strengthening community ties and building strong networks. We now need to develop and research programmes to establish what really works in these areas." 

Dr James Pickett, Head of Research at Alzheimer's Society, said: "People with dementia have the right to live well - however without clear definition it can be hard to determine what ‘living well’ really means. After looking at several factors, the IDEAL programme has found that psychological health has the biggest impact on people affected by dementia living well. Too many people face dementia alone without adequate support, and interventions that improve self-esteem, challenge negative perceptions towards ageing and reduce depression or loneliness could all help improve the psychological health of people affected. Research will beat dementia and while we strive to find a cure, we also need to improve life for the 850,000 people with dementia in the UK today. Alzheimer's Society is proud to be supporting this study and looking further into these interventions - as well funding over £12 million of other research to improve dementia care."

Further information

  • Louise Vennells
    Press and Media Manager
    University of Exeter Medical School 
    Telephone: 01392 724927 or 07768 511866
    Email: l.vennells@exeter.ac.uk

Notes for editors

  1. The careers paper is entitled 'A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia’. The paper on people with dementia is entitled 'A Comprehensive Model of Factors Associated With Subjective Perceptions of “Living Well” With Dementia'. Both papers stem from the IDEAL programme.
  2. IDEAL is a major longitudinal cohort study of 1547 people with dementia and their family members or friends funded by the Economic and Social Research Council and the National Institute for Health Research. The IDEAL study is survey- and interview-based and aims to understand what makes it easier or more difficult for people to live well with dementia. The findings from the study will help to identify 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. The study involved collaboration with the London School of Economics, the Research Institute for the Care of the Elderly (RICE), the universities of Bangor, Bradford, Brunel, Cardiff, Kings College London, Sussex, Newcastle, and New South Wales in Australia, and the charities Innovations in Dementia and Alzheimer’s Society.
  3. Since 2018 the project has been extended as an Alzheimer’s Society Centre of Excellence, making it possible to follow the experiences of participants for several more years.
  4. Visit the IDEAL project website or follow @IDEALStudyTweet on Twitter.
  5. The research was funded under ESRC/NIHR grant number ES/L001853/2
  6. The University of Exeter Medical School is improving the health of the South West and beyond, through the development of high quality graduates and world-leading research that has international impact. 
    As part of a Russell Group university, we combine this world-class research with very high levels of student satisfaction. Part of the University of Exeter’s College for Medicine and Health, the University of Exeter Medical School’s Medicine programme is ranked 5th in the Guardian Guide 2018, while Medical Imaging is ranked 2nd, in the Complete University Guide 2018, under Radiography. Exeter has over 19,000 students and is ranked 12th in The Times and The Sunday Times Good University Guide 2018. In the 2014 Research Excellence Framework (REF), the University ranked 16th nationally, with 98% of its research rated as being of international quality. Exeter’s Clinical Medicine research was ranked 3rd in the country, based on research outputs that were rated world-leading. Public Health, Health Services and Primary Care research also ranked in the top ten, in joint 9th for research outputs rated world-leading or internationally excellent. 
  7. The National Institute for Health Research (NIHR) is the nation's largest funder of health and care research. The NIHR:< >Funds, supports and delivers high quality research that benefits the NHS, public health and social careEngages and involves patients, carers and the public in order to improve the reach, quality and impact of researchAttracts, trains and supports the best researchers to tackle the complex health and care challenges of the futureInvests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and servicesPartners with other public funders, charities and industry to maximise the value of research to patients and the economyThe Economic and Social Research Council (ESRC) is part of UK Research and Innovation, a non-departmental public body funded by a grant-in-aid from the UK government.
    The ESRC is the UK’s largest funder of research on the social and economic questions facing us today. It supports the development and training of the UK’s future social scientists and also funds major studies that provide the infrastructure for research. ESRC-funded research informs policymakers and practitioners and helps make businesses, voluntary bodies and other organisations more effective.
  8. UK Research and Innovation is a new body which works in partnership with universities, research organisations, businesses, charities, and government to create the best possible environment for research and innovation to flourish. We aim to maximise the contribution of each of our component parts, working individually and collectively. We work with our many partners to benefit everyone through knowledge, talent and ideas. 
    Operating across the whole of the UK with a combined budget of more than £6 billion, UK Research and Innovation brings together the seven research councils, Innovate UK and a new organisation, Research England.
Channel website: http://www.esrc.ac.uk

Original article link: https://esrc.ukri.org/news-events-and-publications/news/news-items/research-highlights-what-helps-people-live-well-with-dementia/

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