A European team of experts led by The University of Manchester will explore, investigate and evaluate the role of the neighborhood in the everyday lives of people with dementia and their families in a new research project announced during the G8 dementia summit.
The ‘neighborhoods and Dementia’ study was one of six research projects announced by the Economic and Social Research Council (ESRC) along with the National Institute for Health Research (NIHR), as part of a £20 million funding boost which will significantly add to the understanding of dementia.
It comes as ministers, researchers, pharmaceutical companies and charities are gathering in London for the summit.
Professor John Keady, lead researcher from The University of Manchester, said: “In our five-year study we want to celebrate the achievements, growth and contribution that people with dementia and their carers make to society.”
There are currently 44 million people in the world living with dementia, and by 2050 this number is set to treble to 135 million. Following on from last year’s announcement by Prime Minister David Cameron of plans to tackle the ‘national crisis’ posed by dementia, the G8 Dementia summit aims to agree what can be done to stimulate greater investment and innovation in dementia research.
The Manchester-led project will be the first large-scale research program to work alongside people with dementia and their families in a variety of roles from advisers to co-researchers. As one of its four work programs, the research team will develop neighborhood Profiles using existing longitudinal databases to provide more accurate estimates of geographical variation in cognitive aging and service use to inform policy, commissioning and practice.
The research team involves seven universities (Manchester, Stirling, Liverpool, UCL, Salford, Lancaster, and Linköping in Sweden) and four user groups: EDUCATE (Stockport) and Open Doors (Salford, Greater Manchester, England); The ACE Club (Rhyl, North Wales) and the Scottish Dementia Working Group (Glasgow, Scotland).
Professor Keady, a mental health nurse with a long-standing practice and academic interest in dementia, said: “One of the exciting parts about this 5-year program is that we are going to work alongside people with dementia and their families to help undertake all aspects of the research, from the planning to the doing. This will lead to the development of new research tools for use by people with dementia and their families and help to create innovative ways of working.”
Mike Howorth, who has dementia, is one of the people who will work as a researcher and is already employed by Greater Manchester West Mental Health NHS Foundation Trust where he works with recently diagnosed patients as the Open Doors Facilitator at Woodlands Hospital, Salford. For the last three years, Open Doors has helped to give people with dementia a voice and platform to share experiences and put forward opinions.
Mr Howorth said: “I think the research program idea is fantastic! I’ve got first-hand knowledge of what it’s like to live with dementia and help those who have it so I know involving people with dementia and their carers will make this project invaluable.”
One exciting part of this work is that for the first time researchers will develop a therapeutic tool for people who live with dementia and are deaf and rely on sign language to communicate. Sylvia Simmonds said: “As a Deaf family affected by dementia we were dismayed that there was nothing at all offered for people like us after my father’s diagnosis. This work is really exciting and will open the doors to keep communication going for families like ours.”
Other projects funded within the Dementia Initiative will look at: promoting independence in dementia; managing agitation and raising quality of life; living well with dementia; developing a publicly available tool to help meet the future needs of dementia patients and visual aids and the impact they have on the quality of life of patients with dementia and their carers.
ESRC Chief Executive Paul Boyle said: “Dementia is a major challenge for our society, and it is imperative to develop an understanding of the needs of those with dementia, their families and the communities they live in.
“These six funded projects will provide much-needed evidence for changes in future health and social care policy, as well as practical guidance for charities and third sector organizations working with sufferers of dementia.”