Zibiah Loakthar, our Cuimhne Coordinator writes:
How can we make our brains more resilient to dementia? How can we reduce our risk factors?
Are changes in the brain causing dementia or rather does dementia cause changes in the brain? Or both?
What other questions could we be asking about dementia?
There is a great deal we do not yet know about dementia. What stops us finding out more? Sometimes we have not yet thought of the right questions to ask.
Sometimes we have thought of the questions but still need to develop the tools to answer these and make links with the people who can help in exploring the answers.
Sometimes we have the questions and the tools and community interest in answering these but have still to find the resources to conduct the research. Research may cost not only the time and training of the researchers but also the time and goodwill of the community and all those who volunteer to support the research. There are a whole range of other costs such as community spaces and publicity and travel that are important not to overlook too.
Research may cost but the cost of not researching may be far greater. Not simply in monetary terms: it is estimated that in another 20 year’s time, dementia will cost the UK economy £94.1 billion. But in terms of impact on well-being and the lives of the people we may care about and care for. Research may enable us to make real differences, priceless differences, to people’s lives now and in the future.
Dementia is considered one of the greatest health challenges facing society around the world. Of the top ten causes of death, dementia is the only one that cannot be cured or stopped.
And yet, compared to cancer, dementia has traditionally been an underfunded research area. Where research into dementia has been conducted often the focus has been to explore what happens after the onset of dementia, rather than exploring how we might prevent the onset of dementia in the first place.
The current UK government pledged in its election manifesto to double dementia research spending over the next decade through the delivery of a 'Dementia Moonshot'.
According to Alzheimer’s Society, in practice this should mean an extra £800 million over ten years for dementia research. This may sound a lot at first, but not if we put this in context and recall that by 2040, it is estimated dementia will cost the UK economy £94.1 billion.
How should these funds into dementia research be best spent? Who should decide? Researchers? Policy makers? Tax payers? Communities around people living with dementia? Carers? People living with dementia?
Prevention and care
While there is interest in research to find a biomedical cure, our Irish in Britain Cuimhne team identifies the need for greater research into prevention, caring and the experiences of the BAME communities. In terms of BAME groups, the Irish are often aggregated into the “white” ethnicity category, but we feel strongly that there is a need to look at the Irish as a distinct category for various reasons.
Gypsy, Roma and Traveller groups despite lower life expectancy seem to have increasing levels of young age dementia. We see need too for greater research into young-onset dementia and possible psychosocial interventions here.
We see a need for more social qualitative research into dementia and dementia care, rather than a total investment in bio and neuro and pharmacological research. We need more qualitative research into how carers learn and cope with caring for somebody, and research into the value of psychosocial interventions and innovative approaches with communities to supporting and including people living with dementia and their families.
Our Cuimhne team have been joining the All Party Parliamentary Group (APPG) on Influencing Dementia Research to raise these points.