By April Cashin-Garbutt, BA Hons (Cantab)
It was clear from the title – Dementia: A National Crisis – that the conference would focus on the important challenges facing many people living with dementia in the country today. This notion was strengthened further with the placement of a booklet regarding the Prime Minister’s challenge on dementia on each and every seat in the conference hall. However, it wasn’t until the first talk, by Julia Botsford from Dementia UK, that I truly began to realize the scale of the problem.
Julia started with some astounding statistics: there are currently 800,000 people with dementia living in the UK and this is predicted to be over a million by 2021. This of course has huge financial implications for society. Dr Botsford spoke of how we can improve the quality of life of those living with dementia. She also focused on what people with dementia value, and how this can often be different to what carers think is most important to them.
Martin Green, Chief Executive of the English Community Care Association (ECCA) was next to speak. He focused on what people with dementia and their families have a right to expect. He also outlined the challenges there still are to face, including the creation of dementia-friendly communities and the removal of the stigma surrounding dementia. Martin also looked to the future and what kinds of care homes we should be creating. He told a touching story of a woman whose husband had dementia and exhibited nocturnal behavior. She was forced to call emergency services on several occasions just to get some help. This was a great example of how care homes that offered night-sitting services would be a useful advance.
A director of research from Alzheimer’s Research UK, Dr Erin Karran, then gave a quick science lesson on dementia. He gave a rough outline of what we currently know about how Alzheimer’s disease can cause dementia, however, this was surprisingly less than I imagined. He explained how there are tremendous gaps in our knowledge of the causes of dementia. For example, we don’t know why the amyloid beta peptide deposits in the brain, or even the mechanism by which the neurons in the brain die. Dr Karran stressed how we need to understand the causes of dementia in order to be able to develop treatments for it. He also noted how the conference was largely focused on care, however, soon we will reach a point where there are not enough people to care for the old – particularly in China where they have the one-child policy – and thus we need to develop appropriate drugs.
Next to speak were the main sponsors of the conference – Dr Grossegger and Dr Garn of Alpha Trace. They presented a brief overview of Electroencephalography (EEG) and how it can be used for the early diagnosis of dementia. In a master class later in the day, they also demonstrated the technology on a willing volunteer, who got to don an electrode cap (which looked rather like a rugby scrum cap) to ensure the electrodes were correctly positioned. Dr Grossegger outlined the benefits of the technology in that it is inexpensive compared to MRI or spinal fluid procedures, it is also non-invasive and is readily-available.
Professor Alistair Burns, the National Clinical Director for Dementia, Department of Health was the next to talk. He focused on what is happening at a national level. He referred to the three main aims of the Prime Minister’s challenge:
improvements in care
raising awareness and supporting dementia friendly communities
He reminded us of how the funding into dementia is to double to over £66m per year by 2015 and that while dementia is one of the most feared conditions it is very possible to have a good quality of life with dementia.
A company with a focus on the quality of life for people with dementia presented the second master class of the day. They demonstrated their simple touch-screen calendar and video link, Memaxi. They told a personal story of caring for their relatives with dementia who always asked the same questions. Based on this experience, they developed a simple screen which would answer people with dementia’s main questions:
What day is it?
What time is it?
Should I be doing something?
Have I done this or that?
The device also provides “one touch” video calling so the user can easily contact their family or carer. The device sparked lots of interest from the audience who asked many questions, including the inevitable how much does it cost? The answer was that the software itself costs 15 euros per screen user per month; however, it is also necessary to purchase a screen. Memaxi are also looking into the possibility of renting out screens and software on a rolling monthly contract.
Another touch screen device was also on display in the exhibiting room – CANTABmobile from Cambridge cognition. This device is an iPAD assessment tool for GPs and health care professionals to help to detect the early signs of dementia in their patients so that they can best advise them.
The highlight of the day had to be the talk after lunch by Dr Ann Johnson who was diagnosed with Alzheimer’s disease at the age of 52. She gave a great insight into what life is like when you have dementia. She also emphasized how it is not just a disease of old people, and how there are over 15,000 under-65s living the UK with dementia. Perhaps the most important thing Ann said, and from her anecdotes clearly demonstrated, is that whilst the diagnosis of dementia feels like a sledge hammer, it is not the end of life and there is much to live for.
The man given the difficult task of following Ann’s talk was Professor David Jolley, Consultant Psychiatrist and Hon Reader, PSSRU Manchester University. He spoke of how memory clinics in the UK are often saturated and how the Gnosall project is trying to improve the diagnosis and care of people with dementia.
Finally, the day ended with a panel discussion between John Kennedy, Director of Care Services, Joseph Rowntree Foundation; Dr Matthew Norton, Social and Economic Research Manager at Age UK; and Dr Amanda Thornton, Clinical Director for Adult Community Services, Lancashire NHS Trust. Amanda focused on how we need to overcome the raging stereotypes of people with dementia and to encourage young and old people to socialize together. John talked about his research in the city of York where he spoke to people to find out how changes could be made to make York a dementia-friendly city. His suggestions included increasing the awareness of staff in both supermarkets and hotels. Finally, Matthew used some more shocking statistics to emphasize the problems that still face the nation with regards to dementia. In particular, he noted while in cancer research £295 is spent for every patient; in dementia research, that figure is only £61.
Overall, the day was very informative and outlined the central issues with regards to dementia. It was inspiring to hear the profound knowledge and understanding of the current national crisis and the many options available for the future.
For more information on the next dementia conference please visit: http://www.publicserviceevents.co.uk/237/dementia-birmingham