The idea of dementia as an asset sounds almost offensive but this was a suggestion that came out of a recent seminar hosted by the Guardian, in conjunction with the Joseph Rowntree Foundation, the British Red Cross, PA Consulting and Barchester Health Care. In fact, it's a call for us to rethink the whole way we understand dementia and even ageing itself. The idea? People with dementia and their families need friendly communities where care is reliably shared and respect for the human person, no matter how old or frail or confused or debilitated, is the touch stone. Dare we ask, could the drive to create such communities in fact be the key to a better life for us all?
It's this kind of radical thinking that is going to be essential in ensuring that we can look after the estimated 1.7 million of us who will be living with the disease by 2050. (Currently there are over 820,000 and my area of Yorkshire has a higher than average incidence.) An idea that came from the seminar took the model of what happens when you get pregnant. When the pregnancy is confirmed, in effect, you join a community. You usually receive a welcome pack, you have a midwife assigned to you and you attend groups that introduce you to other parents-to-be. This helps to support you through your pregnancy and there is good evidence that mothers who engage with all this have a lower incidence of birth complications. Dementia sufferers need a similar approach. At the point of diagnosis, they need information, time to discuss the implications, an assigned health worker who is going to ensure that there is some continuity of care as the disease progresses and a gradual introduction to a community of others who are facing a similar journey. Longer GP appointments which allow extra time in order to overcome communication barriers would be helpful in the case of anyone who has the disease. In addition, because of memory loss and the lack of facility to recognise people that often comes later in the disease, people with dementia need to see the same faces again and again and to be cared for by professionals who get to know them and their families in some depth. Pregnancy care is also a good model because it entails real co-operation between mother, family and professionals. This is something that is increasingly being eroded in health care as each branch becomes more and more professionalized and as the way we deal with important safeguarding issues drives a wedge between what can be offered professionally and what can be done voluntarily. For a happy life, a dementia sufferer needs to be surrounded by professionals, family and volunteers who communicate effectively with one another and, under controlled circumstances, share vital information.
I was recently talking to a taxi driver at the gym. She was telling me about how much of her work is now with the elderly, including several people who have dementia. She picks people up, helps them to remember where they are going and what they need to take with them, and often has to allow extra time to gently persuade them do even simple things like getting in and out of the car. She has several people whom she takes regularly to visit family or to day centres or for fish and chips(!) and these people would not get out at all if it were not for her care. This is all in a day's work and she doesn't have any special training but she knows that she is a key element in a support system that allows these individuals some dignity and enjoyment of life.
The Dementia Friends Initiative here and local initiatives such as, in my area of North Yorkshire (Ripon and Harrogate), Dementia Forward here are working to create a situation where there are one million people in the UK who are 'Dementia aware' by 2015. They are looking for people to befriend sufferers and their families and people who are willing to acquire sufficient understanding of the disease to become champions. One idea that has been put forward is that we designate 'dementia friendly towns' rather along the same lines as cities and towns of sanctuary which offer a particular welcome for asylum seekers. This would involve training people like bus and taxi drivers, shop assistants, bank clerks, housing facility managers and clergy to be aware of how they can be most helpful to the people with dementia they come across everyday as part of their job. It's not just health care professionals that need specific training.
Please, please take a moment to think about this and/or visit one of these sites. Could your locality work towards becoming a dementia friendly place, perhaps starting with your place of work or church?
One person in three is likely to develop some degree of dementia. Did you know that it is possible only 45% of people with dementia have been diagnosed in the UK? The NHS is aiming to get this up to 66% by 2015. Would we accept this figure for other diseases?
People with dementia make a big contribution to our lives. My music tutor was playing the piano well into the disease; I've only just put down a Terry Pratchett novel.... You can find further examples in the Alzheimer's Research UK Blog here