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Professor Jenny Rusted

New research from a group of universities including Sussex has shown that positive thinking, strong self-esteem and not feeling lonely are among the most important factors that enable people with dementia and their carers to live as well as possible.

Professor Jennifer Rusted from the School of Psychology within the University of Sussex is part of the research team, which was led by the University of Exeter. The large-scale study has produced two new papers published today (21 December), 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.

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 1,283 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 project shows where resources should be spent to support the 50 million people worldwide who have been diagnosed with a dementia in order to help them to “live well”.

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

Professor Rusted said: “A dementia diagnosis impacts not just the person, but the entire household. The IDEAL programme is the largest of its kind – measuring and modelling multiple factors and the changing balance over time.  We’ve found that psychological health is the most important factor which can help people with dementia, and their families, to live well. That means that helping people to feel connected and part of a community, as well as to stay optimistic and to feel well looked after, can all make a huge difference to the quality of life of everyone in the family.”

The research found that experience in other areas of life influences psychological well-being and perceptions of living well, and that:

• Physical health and fitness was important for carers and people with dementia;
• 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.

Lead author Professor Linda Clare, of the University of Exeter, who also leads the IDEAL study, said: “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.”

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 £12m of other research to improve dementia care.”

Both papers stem from the IDEAL programme. IDEAL is a major longitudinal cohort study of 1,547 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.

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. 

For more information, visit http://www.idealproject.org.uk/ or follow @IDEALStudyTweet on Twitter.