This week Sarah and I attended a focus group organised by the Health and Wellbeing Board and Bedford Borough to look at the question of End-of-Life Care and how the care pathway could be improved. We were a small group, but I think we came up with some good ideas.
It is almost exactly a year since my husband died from a brain tumour and our family has obviously been reliving those last weeks we had with him more than usual. I was able to reflect on the excellent care he received from the point of diagnosis at Mount Vernon Hospital following the cancer care pathway to his GP, the PEPS team, Macmillan and the Hospice.
I was amazed because I was used to hearing the typical story of end-of-life dementia care. No clear pathway following diagnosis – sudden deterioration, admission to an acute hospital ward via A&E and a rapid deterioration from that point on. Often more than one admission to hospital and more than one admission to a care home. We hear so many stories of decisions made in crisis, where choices are limited, and families are placed under additional strain as they struggle to decide what to do for the best.
Of course, it varies. We also hear stories of people dying peacefully and well with dementia and know carers who have made the long and difficult journey alongside them who are able to emerge at the other end in a good place. It does happen. Does this partly depend on all concerned being able to accept and TALK ABOUT what the future holds? It’s the euphemisms and half-truths which make it so hard. We live in a society in which death is the last is the last great taboo. We laugh at our Victorian ancestors who were so prudish about sex – their great taboo. They could be laughing at us because we are so squeamish about death. Our great taboo.
Today I heard an expression which I had never heard before – “Walking backwords into the future”. Do you know it? It’s very neat. It exactly describes what most of us do. If we rewind to the very beginning – when we were given the diagnosis of dementia – how many of us were able to look it squarely in the eye and make the decisions which must be made, deciding together what we want, making a Lasting Power of Attorney, an Advance Directive, a Will? Or do we bury our heads in the sand believing on some primitive level that if we don’t look it in the eye, it will go away. This is what the psychologists call “Denial”.
Dementia is a terminal condition. We try hard within our community to help people to come to terms with this fact. Mostly this is done in Support 4 Memory courses and Encompass groups. We also try to help through Anticipatory Grieving – grieving while the person is still alive. But alongside that we do our best to help people to live as well as possible with dementia. As I wrote in my blog a few weeks ago – our groups may seem like meeting friends, doing stuff we enjoy we enjoy and a cup of tea and a biscuit. But we are actually providing Psycho-Social interventions.
Sarah referred to the day conference which some of us attended last week called “Future Directions in Dementia Care”. The future directions were psycho-social interventions. As she said – we are already doing a lot of the things that the five experts talked about.
The speakers were of a very high calibre, and I was particularly interested in the presentation by Associate Professor Charles Scerri who, among other things is Honorary secretary of Alzheimer’s Europe. He gave us a pan-European view of dementia care – with a bow to Brexit of course – and we learned some interesting facts such as that it takes three times as long to receive a diagnosis of dementia in the UK than it does in Germany and that Scotland has the highest rate in Europe of telling the diagnosis to the person with dementia.
But the statistics are eye watering. He said that dementia is the most expensive disease in the world, but it receives a fraction of the money spent on research into other diseases – 1/10 of the money spent on cancer, ¼ on vascular disease and yet it is the leading cause of death in women in Europe. 2/3 of people with dementia worldwide are never diagnosed. There are 30 million people in Europe diagnosed with dementia and we are looking at the tip of an iceberg because of the thousands who are not diagnosed. He said that we are still very far away from a cure.
Professor Alistair Burns who is the National Clinical Director for Dementia and National Clinical Director for Mental Health in Older People NHS England (in other words the Head Honcho) gave it as his opinion that we will never find a single cure for dementia and that 99.7% of clinical drug trials have failed so far. The drugs which we were all used to, such as Donepezil and Memantine are over 30 years old. Prof. Burns said that the Holy Grail for research now is to maintain function at the highest possible level and slow down decline. Discovering the most effective ways to do this of paramount importance.
On the whole people in the UK now remain pretty healthy till the age of 80. Dementia is essentially an end-of-life issue, he said. 80% of people living in care homes have dementia and 80% of people with dementia have another long-term condition as well. So – returning to the local Focus Group on End-of-Life Care, it’s good that we at Tibbs Dementia, were included.
He reckoned that we could prevent 1/3 to ¼ of cases through better treatment of vascular conditions such as heart attacks and strokes. But that research should really be concentrating now on prevention and psych-social interventions. Cognitive Stimulation Therapy (CST) has a solid body of evidence-based research to show that it is as effective as the drugs currently prescribed in slowing down the progression of the disease. That it is why it is included in the NICE Guidelines for Dementia Care. The good news is that now have two CST groups in Bedford. The bad news is that we are operating a waiting list. The third CST group in Flitwick has just started.
We have much to be proud of in Tibbs Dementia. But there is much for improvement. A proper care pathway from those first signs that all is not well right through to End of Life would make a lot of difference to people’s lives.