Learning from dementia – the difficulties it brings, the moment care of the condition changed, and what’s next for those affected…
This week is Dementia Awareness Week. And dementia is worth being aware of. As Sally Magnusson notes in Where The Memories Go: Why Dementia Changes Everything, ‘If dementia were a country it would be the world’s 18th largest economy, somewhere between Turkey and Indonesia.’ A scary thought, especially when applied to our ageing population.
Reviewing Where The Memories Go Linda Grant writes, ‘[T]he loss of memory is one of the greatest mysteries of our age. Without memory we are nothing and no one.’ The gradual recession of the knowledge that defines us is as unimaginable as it is distressing. But it is not the case that without memory we are ‘nothing and no one’, – a person forgetting is not a person forgotten. Every sufferer of dementia is an expressive, experiencing individual.
For this reason the progression of dementia is very difficult for everyone involved. The inability to recall the recent past associated with the first stage of Alzheimer’s is followed by further deterioration of memory. It’s an illness of confusion layered on confusion. Its very causes can create in the sufferer, not just distressing symptoms, but an amplified struggle with those symptoms and that distress.
So what has been shown to help when the individuals involved are struggling? How do we learn to live with dementia?
It was Thomas Kitwood who turned the treatment of dementia on its head in his publication Dementia Reconsidered: The Person Comes First by putting the person before the disease. As Kitwood powerfully put it in his 1997 introduction:
‘[T]he history of science seems to show that when the anomalies become too glaring there will be some who try to frame the problems in a different way; the time for a new paradigm has come. / The principle of this book, then, is to take up this challenge and present a paradigm in which the person comes first.’
Central to this person-first approach is Kitwood’s Dementia Care Mapping – a crucial tool in the understanding and treatment of dementia. DCM is a way to learn about the emotional landscape of a person. At the core of DCM is time spent with the dementia sufferer, observing their reactions. The patient’s response to all sorts of situations is noted. Moments are marked as increasing or decreasing wellbeing and personhood. The method is simple, effective and approved. NICE has recommended person-centred dementia care since 2006. Kitwood described the approach as, ‘a serious attempt to take the standpoint of a person with dementia, using a combination of empathy and observational skill.’ Observation by observation, a picture of life through the patient’s eyes is painted.
As the people around the patient learn the little things that help, their own tasks can become easier. This means, if used well, this kind of person-specific, observational treatment empowers carers to relearn the person they feel they are losing.
Kitwood’s personal aim was, ‘to understand, as far as possible, what care is like from the standpoint of the person with dementia’. Listening to and learning from people with dementia shapes the quality of future care.
Sadly, there’s not a lot of user experience data around dementia care. Picker would love to work towards developing observational tools as part of care visits, measuring the experience of the patient in order to improve the experience of dementia.