In the 11th installment of its Making the Case for Social Science series, Britain’s Academy of Social Sciences and its Campaign for Social Science tackle the burgeoning crisis of dementia. Dementia – the catchall term for a variety of cognitive issues of which Alzheimer’s is the most widely known – is, according to the foreword to the Academy’s new booklet, a “global demographic imperative in terms both of numbers of people affected (rising from 46.8 million in 2015 to 74.7 million in 2030) and costs (approx £575 billion in 2015 – over 1% of global GDP).”
This malign impact is widely recognized. The Prime Minister’s Challenge on Dementia (2012-2015 and 2015-2020) makes clear that increasing the quantity and quality of dementia research is a priority for the UK government. While David Cameron’s aspiration is for the United Kingdom country to be “the best place in the world to undertake research into dementia and other neurodegenerative diseases,” and the UK has taken a global lead in the fight to defeat dementia, funding for dementia research is still very low compared to other conditions such as cancer. That is despite funding has doubled and initiatives from the G7 countries, the EU Joint Programme on Neurodegeneration and the World Health Organization are addressing dementia.
But, as the Academy notes, most of the spending is going toward biomedical research, and “dementia cannot be seen only through a biomedical lens.” In service to that realization, the Academy prepared a booklet case studies of social science research that has made a difference to policy and practice.
The booklet was brought together by an expert advisory group led by professor Bob Woods FAcSS of Bangor University, who chaired a March launch event, and included professor Woody Caan FAcSS, professor Murna Downs, professor Jill Manthorpe FAcSS, professor Judith Phillips FAcSS and Lisa Morrison Coulthard. The project was sponsored by 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.
“I applaud the initiative the Academy has taken,” said Norman Lamb, MP and former minister of state for care and support, at the launch event. “There is insufficient recognition of the critical importance of social science.”
A packed Committee Room 11 in the House of Commons heard 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 and a clinical psychologist, added that we need to translate ideas and research into real life changes, recalling her personal close experience of 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 joint 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 caregivers as it is they who have the knowledge.
Colin Capper, head of research development and evaluation for the 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 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 caregivers 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 –Jo Moriarty of King’s College London – who talked about risk management and dementia – and 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 percent of people with dementia down to 11 percent.
Woods spoke about ‘person centered 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.