This week is Dementia Awareness Week. The BBC have been running various programmes around dementia and the issues that it raises. Well done the BBC. A brilliant public service broadcaster – in fact, I would happily pay my licence fee just for the BBC web site, Radio 4 and Test Match Special alone.
BBC Tees asked me to do an interview this morning as part of their week to talk about Middleton Hall’s innovative model of care – Family Living.
For me, Dementia is one of the three big challenges that the world faces for our future and those of our children and grandchildren. In case you are wondering, the other two are Climate Change and Obesity. Obviously I am tempted to throw in world peace but us humans have never been terribly good at that throughout history and apparently since 1945 we are killing less of each other in major wars than ever before. However, I will stick with the three challenges as four seems quite a lot to worry about.
Dementia is a massive issue for the UK. We cannot afford not to deal with the problem because the next generation simply cannot afford the problem – the continuing increase in numbers of people with dementia will cripple the NHS and empty the national coffers (which are not exactly overflowing), resulting in higher taxes or us all working to 75 before we get a sniff of a pension.
Currently we have no cure, no effective diagnosis and are pretty poor at caring for those with dementia and their families.
The traditional care home model, creaking under the weight of local authority cut backs, is no way to look after people with dementia. 15 minute home care visits are also not the answer. No surprise that CQC published a damning report this week into care for dementia in care homes and hospitals.
The system in the UK is that when someone is unable to cope at home or their family are unable to cope, we often move them into an institutional environment, remove their decisions and stop them doing what they are able to do. It is called a dementia care home. There they will find themselves confronted by long corridors, doorways and we will put them in a sitting room with 20 or 30 other people and then sit them down in a dining room with many other people. No matter how good or caring the staff, this is an alien environment for most people and radically different from the home life they are used to. They may get distressed and start to exhibit so called “challenging behaviour”. So what happens? We give them drugs. To keep them quiet. So they sleep during the day and are awake at night. They go “wandering” and we try and stop them. They lose their fitness, independence and appetite. And so on. I will stop before I get too depressed.
I am no expert and have no qualifications in this area, but a few years ago I visited the Netherlands and looked at their model of Small Group Living and Green Care Farms. I also read a few books including the fantastic book by Graham Stokes “And still the music plays”. He is a psychologist specialising in older people and tells the stories of around 20 people with dementia and their behaviour. His theme is that people’s behaviour should not be blamed on dementia but on our lack of understanding about the person. He worked out with each person what lay behind their behaviour and the means of helping them to be happier by adjusting their environment to suit. I would recommend it to anyone caring for someone with dementia.
At Middleton Hall we will only offer a service if we are confident it will meet our values. For many years, we shied away from a dementia service as we were not confident of being able to deliver an excellent and innovative service. Inspired by what I saw in the Netherlands and Graham Stokes’ book, we have given it a go.
And so far, Family Living has made a real positive difference to our residents’ lives and their families. Which is what social care should be about – a positive experience.