Sarah’s Health Notes: Supporting People With Dementia
Talking to people with dementia can be a huge strain. I felt inadequate that I didn’t know how to hold a conversation with my father, who was diagnosed with non-Alzheimer’s dementia in 1999, and was mostly anxious and confused. I found it draining and distressing as I tried to follow his meanderings up seemingly nonsensical byways and then respond to the sudden erratic leaps into lucidity, which then evaporated into mist.
The most useful advice was not to try to impose my own logic on a conversation: ‘Don’t try to make it make sense,’ said a close friend, whose mother had Alzheimer’s. I didn’t always heed it but when I did our meetings ran more smoothly and I didn’t beat myself up on my way home because I knew both of us had heard the edge in my voice. My father died some years ago and I never found that sort of good advice in any book. Now there is one – with an enormous amount more. I found myself weeping as I read Contented Dementia by clinical psychologist Oliver James, which describes the SPECAL (special early care for Alzheimer’s) method developed by his mother-in-law Penny Garner, because this ‘wraparound care’, as they call it, offers such a loving and accepting way of interacting with people in this state.
I wrote those paragraphs – the beginning of a feature in the Mail on Sunday YOU magazine – in 2008. I looked it up recently because of another family member being diagnosed with a form of dementia, also a friend telling me about her mother and another about her husband. So here is the rest of the feature with a few updates. I should add that everyone who has read the book ‘Contented Dementia’ by Oliver James has told me how hugely helpful it is.
After watching her own mother Dorothy’s struggles with dementia and the sadness it brought the family, Penny analysed what was happening and then how carers – health professionals, family and friends – could enter into the demented person’s world rather than trying to tug them back into our reality. Her most important point, says Oliver, is that the only difference between the person with dementia today and the person you used to know is that they have no short-term memory. But, crucially, memories from long ago are still there, largely undamaged and intact.
Carers often worry that people with dementia live in the past but, explains Oliver, it’s their way of making sense of things: ‘If you were sitting in a roomful of people and didn’t know why you were there – or even who you are – chances are you’d try to make sense of the situation by spinning back to something in the past that resembled it.’ Thus Penny’s mother, an inveterate traveller, assumed that doctor’s waiting rooms were airport departure lounges. By entering into Dorothy’s scenario, Penny found that she stayed calm and collaborative. The strategy isn’t ‘just about encouraging them to sit reminiscing,’ Oliver emphasises. ‘By allowing them to stay in a safe past, they are much less anxious, so present-day tasks – such as encouraging them to eat or go to the loo – become much easier.’
It’s an important book for carers of people with more advanced dementia and the advice is also relevant for earlier stages. At the beginning, Penny writes an open letter to readers who have been diagnosed with dementia, in which she explains that the book is designed for other people to learn what’s happening so that they can help rather than hinder. To people with dementia, she says:
'From now on, don’t worry – it will just make things worse.
From now on, nothing new – just stick to what you know and love.
Appoint the person you most trust as your advocate – and get them to read this book.
Forget all about the diagnosis – you’re very good at forgetting, so use this skill to forget about dementia, and just enjoy your life.’