Policymakers call for more spending and greater awareness on dementia
16 March 2016
‘I applaud the initiative the Academy has taken; there is insufficient recognition of the critical importance of social science,’ said Rt Hon Norman Lamb MP at the launch of the 11th issue in the Making the Case for the Social Sciences series, on the topic of Dementia.
A packed Committee Room 11 in the House of Commons heard Mr Lamb call for a stronger evidence base for public spending and its evaluation. He drew attention to the Dementia Friends initiative which raised public awareness of the condition across society. He also called for more spending on understanding dementia – one of the greatest challenges of our time. ‘We need to discover how to cure it, how to delay its onset and, critically, how to care for people with dementia better and how to improve their lives, and social science research has improved this’, he said.
Dr Lisa Cameron MP, herself a clinical psychologist, added that we need to translate ideas and research into real life changes, recalling her personal close experience of dementia, when her grandmother – who was suffering from dementia – came to live with her family. She understood how difficult it is for the whole family and noted the importance of a good social life for an adult with dementia in balancing mental health. She called for a joined up approach to dealing with this challenge, from right across government, and said it was important for government to listen to people living with dementia and their carers as it is they who have the knowledge.
Colin Capper, Head of Research Development and Evaluation, Alzheimer’s Society, called for greater collaboration across disciplines and universities and for investing in funding for care research. He drew attention to how much has been achieved by a relatively small research community. Audience members also noted the small size of the dementia research community, and Norman Lamb suggested a new way forward. Research funding decisions are not made by the right methods, he said, because the decision making focuses on the proposed project rather than on the relative burden imposed on society by the problem. If the model for allocating research funding is changed so that more money is allocated to bigger problems, increased research strength will follow.
Baroness Sally Greengross stressed the social element of conditions like dementia: ‘life is about society so a social science understanding of people is vital.’ She noted that dementia is a social disease that affects not only individuals, but their carers and families as well, adding that more interest in the topic of dementia needs to be raised.
The audience heard from two of the booklet’s contributors – Dr Jo Moriarty of King’s College London – who talked about risk management and dementia – and Professor Murna Downs of the School of Dementia Studies at the University of Bradford, who drew attention to the highly positive outlook now existing in dementia studies. Professor Jane Fossey, also a contributor, was able to update her story on the highly successful reduction of prescribing of antipsychotic drugs: using simple social activities to promote wellbeing tailored to individuals’ interests, participants within the FITS and then WHELD study had reduced the use of antipsychotic drugs from an initial 47% of people with dementia down to 11%.
Professor Bob Woods FAcSS, who chaired the Expert Advisory Group that produced the booklet, spoke about Person Centred Care and how, by adapting an individual’s world, that enables them to participate more fully. In this way the entire dementia ‘journey’ is covered – from pre-diagnostic counselling to how individuals living with dementia interact with those around them. He called for improvements in support for people with dementia: ‘This is not a custodial job – enabling and orientation requires a properly trained workforce,’ he said.
Another key issue that was discussed during the seminar was how social sciences could help lift the stigma that remains attached to dementia – in the same way that mental health is now openly discussed. One participant spoke in heartfelt fashion of how the application of the label of ‘dementia sufferer’ removed dignity and public respect from her late father and led to him being treated as entirely incapable, even though he retained many high level skills from his professional career.
The booklet of case studies of excellent social science research that has made a difference to policy and practice was brought together by an expert advisory group led by Professor Bob Woods FAcSS of Bangor University, who chaired the launch event, and included Professor Woody Caan FAcSS, Professor Murna Downs, Professor Jill Manthorpe FAcSS, Professor Judith Phillips FAcSS and Dr Lisa Morrison Coulthard. The Academy and its Campaign for Social Science are indebted to them for enabling this project to succeed, and to the sponsors – the British Psychological Society, Alzheimer’s Society, Age UK, the School of Dementia Studies at the University of Bradford, and the British Society for Gerontology – who provided the necessary financial support.