The IDEAL Project – living well with dementia

John Hindle is a consultant geriatrician in Wales. He is one of the co-investigators on the IDEAL project.

IDEAL is a major, five-year longitudinal cohort study of 1,500 people with dementia and their family carers throughout the UK using mixed methods to examine how social and psychological capitals, assets and resources influence the possibility of living well with dementia and to identify changes that could result in improved well-being, life satisfaction and quality of life.

The project draws together expertise from psychology, sociology, medicine, public health, economics, social policy, physiology and statistics to examine in detail what can be done to ensure that as many people as possible are enabled to live well with dementia.

The project is led by Bangor University in collaboration with Cardiff University, Brunel University, the London School of Economics, King’s College London, Sussex University, the Research Institute for the Care of Older People (RICE) in Bath, the Alzheimer’s Society and Innovations in Dementia CIC. The chief investigator is Professor Linda Clare, the project manager is Dr Sharon Nelis with Dr John Hindle as a Geriatrician co-investigator.

Living well with dementia, whether as a person with dementia or primary (usually family) carer, means experiencing optimal well-being and the best possible quality of life, and feeling satisfied with life. Enabling people with dementia and primary carers to live well with dementia is a key UK policy objective, but we need to know more about what can help people to live well with this type of long-term, chronic disability. In this project the researchers will find out how social and psychological assets and resources, and the extent to which people are able to engage in activities and participate in the community, affect the way in which people adapt to the effects of the condition and the challenges it presents, and how this changes over time as dementia progresses.

Over a two-year period the research team will recruit 1,500 people with early-stage dementia of all types, and at least 1,000 primary carers, through NHS memory services and other relevant services such as movement disorder clinics. All participants will be visited on three occasions over three years, and will be asked to respond to questions about things that influence their well-being, quality of life and satisfaction with life. Participants for whom well-being improves or declines markedly over the first year of the study will be interviewed in more depth to help explain why these changes have occurred. 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.

IDEAL is funded by The Economic and Social Research Council and National Institute for Health Research, and will be carried out in conjunction with NIHR CRN DeNDRoN in England, NISCHR CRC in Wales, and SDCRN in Scotland. The study will be the first large-scale study of its kind, and the results will provide a unique resource and focus for social science research on dementia.

Find out more at http://idealproject.org.uk

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