As someone diagnosed with early onset Alzheimer’s disease in July 2014 at the age of 58, I have a vested interest in research being carried out in the field of dementia.
If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn of medicine’s enigmas.
I recently attended a workshop at the Royal College of Physicians as a lay member representing ‘Join Dementia Research’. It was hosted by leading professors and specialists in the field of dementia research. The aim of this event was to identify and consider new approaches to clinical research in dementia which could be taken forward by the National Institute for Health Research.
What quickly became apparent to me was the need for far more researchers to join these talented experts. While we can be proud that many of the world’s leading specialists in dementia research are based in the UK, there is a striking imbalance between the amount of research needed and the number of scientists there to do it. There are six times more scientists working in cancer than there are in dementia which is staggering.
The second most important outcome of the meeting for me, as someone living with dementia, was learning the frustrations researchers face in recruiting volunteers for clinical trials. As soon as I was diagnosed I wanted to be involved in research trials, but they were extremely difficult to find. The NHS clinicians I met both prior and post diagnosis never gave this as an option. I naively thought there would be close connectivity between the NHS and the research community but, in reality, it appears many NHS clinicians are ‘protective’ of their patients against researchers. This patriarchal approach takes away patient choice. I myself work in the NHS where much is talked about ‘patient choice’ – particularly by politicians who hold it up as the gold standard – but this is being ignored in the case of research by so many. Without willing volunteers we have no chance of discovering new approaches to treating dementia.
There is a real paucity of clinical trials being conducted into Alzheimer’s disease and other forms of dementia – with more ongoing trails into hay fever than some forms of dementia. This is a big factor in why there have been no new treatments for dementia in over a decade.
The War on Cancer and the coordinated response to HIV and AIDs both resulted in pioneering new treatments and a better understanding of the diseases. We need this to be replicated in the field of dementia.
Recent research showed that dementia costs the UK over £26 billion a year – enough to pay the energy bills of every household in the country, yet only a fraction of this amount is spent on research.
So if I could say one thing to party leaders in the run up to the election it would be this: now is the time for action on dementia. As I learned on the 31st July 2014 when I was given my diagnosis it is not an inevitable part of the ageing process. It is a disease that needs tackling as much as cancer does.