On Tuesday I was thrilled to be on the panel at the Dementia Challenge Conference in London where a brilliant range of speakers educated us about various dementia related topics. Here I pick out some of the points that I found the most interesting and encouraging:
Alistair Burns could not be with us but sent us a video in which he informed us that diagnosis rates are improving – up from 42% to 61% in the last year. We are also making huge inroads with Dementia Friendly communities and in particular the Dementia Friends project which has now attracted 1 million ‘friends’.
Sally Warren, Deputy Chief Inspector for CQC, illustrated ways in which CQC is looking to improve on the findings of their “Cracks in the Pathway” report which looked into transitions from hospitals to homes. They discovered that 90% of care was variable and there were few examples of cases where people with dementia had encountered good practice every step of the way. They have launched a campaign called ‘Good Enough for Mum’ which emphasises that all care must be as good as we would want for our dearly loved relatives. CQC has also introduced a section into all hospital reports titled ‘Meeting people with dementia’s needs’.
Dr Simon Ridley, Head of Alzheimer’s Research UK, spoke on the epidemiology of dementia and cited research which has found that low education, hypertension, smoking and diabetes are the largest contributors to developing dementia. He added that, in tackling the increase in dementia cases, advertising single choices don’t work. I considered this and wondered whether, for example, anyone joining an NHS stop smoking course would cite warding off dementia as a reason for stopping smoking. It is certainly true that we have to involve a combination of lifestyle choices in order to ward off dementia – walking, not smoking, not drinking too much, being socially active etc etc. Maybe the fact that more than one choice is required prevents people from applying research findings to their own lives?
Martin Rosser, another leading expert in research, gave us some stats on dementia research – revealing that for every £10 spent on cancer research £1.08 is spent on dementia, but this is changing! Governments worldwide are starting to wake up to the fact that we need to tackle dementia now. Using a video of a shrinking brain he showed that we can detect the signs of Alzheimer’s disease 5-10 years before symptoms present – you wouldn’t wait until a tumour was so big before treating it and we need to apply the same principles to dementia. They are actively trying to attract more researchers too, a problem when it comes to funding experiments. His talk did encourage me to volunteer for research having now joined the ‘Join Dementia Research’ website in case there is a study I can take part in.
Dr Julian Brown demonstrated an electronic records programme he has written which should improve communications between people with dementia, carers and the health professionals, especially when the patient goes into hospital. this reminded me of the extravagantly funded Electronic Records System the NHS was embarking on about 12 years ago – what happened to that?! Dr Brown’s concept seemed a lot more user friendly and is being applied in 35 local authorities already.
In terms of the impact the conference speakers had on my personal passion – the legal aspects of the dementia journey – I questioned Nikki Crowther, Head of Engagement at the Alzheimer’s Society, about the 45 minutes of Dementia Friends training they have developed, suggesting that they could add something in there about LPA/Court of Protection. She said that they were reviewing the training and that although 45 minutes is not very long, they might be able to incorporate my suggestions.
Nicki Barnes, Director of Operations at SweetTree Homecare services spoke about their publication “A Road Less Rocky” which contained a statistic pertinent to our work: 55% of carers felt they had not been given enough information about the legal issues and managing money. Consequently, during the panel session, I raised my concerns about the way in which events such as the conference, and also the Dementia Action Alliance, shy away from legal issues when in fact they can cause just as much stress as the well known challenges of dementia such as inappropriate behaviour and incontinence.
The other point that I was keen to make, on the debate about society disabling people with dementia, was highlighting the findings of the House of Lords Select Committee which reported in March on their conclusions about the successful implementation of the Mental Capacity Act, since the findings were that it has not been successfully implemented! The Chair, Tom Wright, said ‘Yes, there has been a push on this recently’
‘The Act was passed in 2005 though’ I said, which raised a laugh.
Finally I must mention Mary Sherwood, Project Manager and Creative Facilitator at the Met Office (that’s weather related, NOT the Metropolitan Police, as I initially assumed!). She is doing for the Met Office what I want to do for more businesses – creating a dementia carer friendly workplace. She has set up a network which supports members and is educating the organisation about the benefits of helping people who are or may be caring for a relative with memory loss as well as working full/part time. She gave me some invaluable advice; her website can be found here: www.dementiacarerfriendly.com
Seeing our logo on the big screen alongside Carers UK, Alzheimer’s Society and ARUK was a moment I will always savour, I can say I felt proud of what we have achieved and are going to achieve in the future.