Dementia: descent into hell or foretaste of heaven?

As a Christian mental health professional I sometimes feel as if I live in two opposing cultures, writes Shirley Pearce. But they have come together recently, in my work with dementia, to shed new light on my faith.

It is widely assumed that dementia involves loss of reason, intellect, personality and relationships. At the memory clinic where I used to work, both patients and carers expressed their fears of what was to come. Medication could sometimes delay the worst, and support groups provided sympathy, but nobody could offer real, positive hope.

But then I came across the book Contented Dementia by psychologist Oliver James in which he describes the SPECAL (pronounced ‘speckle’) method of managing dementia. After his mother-in-law, Penny Garner, had supported her own mother with dementia, she discovered that her approach worked just as well for other people with the same condition.

She had noticed that her mother was more relaxed with her than in the company of her husband (Penny’s father), who, with the best intentions, was constantly trying to re-orientate her and ‘put her right’. This seemed to exacerbate the problem, eroding her self-esteem and increasing her stress. But Dorothy had a close relationship with her daughter and she explained to her: ‘I haven’t lost my reason, just my information’. Penny began to understand that her mother was trying to make sense of her current situation by using old information, simply because she had no access to more recent facts.

It is not the disease itself which causes many of the problems associated with the condition. Very often it is care which disregards the experience of people with dementia. When we insist that we know best and what they believe is wrong, we erode their self-esteem and dignity. This causes great distress and is the root of much ‘challenging behaviour’.

Having read the book, I was determined to attend a training course on the SPECAL method run by Penny at the Contented Dementia Trust. As an alternative approach, it was not supported by the local NHS Trust, and I had to argue the case for time to attend the course.

Penny uses the analogy of a photograph album to represent the way we store individual memories, as ‘photographs’ in our memory ‘album’. Each photograph contains the facts of the experience with the associated feelings. We constantly refer to the most recent photographs to make sense of our current situation. Normal ageing does not affect this process, but it does make us slower to find the photographs we need. However, with the onset of dementia, a completely new type of photograph begins to be stored in our album.

This contains only the feelings of what has just happened, but without the associated facts. Over time, more and more of these ‘blank’ photographs are stored. People with dementia have to search further back in their album in order to find intact photographs to make sense of their current feelings. Those around, with all the current facts at their disposal, may not agree with the sense they are making, and may even think that the person is going insane.

Once I understood the SPECAL Photograph Album analogy, some of my patients’ behaviour and remarks started to make sense. I began to see how I could work with their dementia, instead of trying to fight it. Frequently repeated questions and sayings became a useful resource. I gradually became more observant as tiny snippets of conversation and gestures provided useful insights into people’s lives. I found I could use their ‘finest hour’ stories to provoke feelings of well-being instead of anxiety and stress. And since new facts were rarely being stored, these positive feelings could be used again and again without risk of boredom.

Now, for the first time, I understood John Newton’s description of heaven in the hymn Amazing Grace:

When we’ve been there ten thousand years, bright shining as the sun,
We’ve no less days to sing Thy praise than when we’d first begun.

This has long been one of my favourite hymns, but I used to have a problem. Much as I loved singing hymns, surely boredom would set in after the first 9,999 years or so! But no - just as dementia makes it possible to recycle joyful moments, I now know that we will never tire of heaven.

Understanding dementia has taught me a lot, but of course the Bible said it first. Our heavenly Father gives good gifts (Matt 7:11) and He makes all things new (Rev 21:5). So the excitement of arriving in that wonderful place, and setting eyes on our Lord and Saviour for the very first time, will never fade.

Shirley Pearce is an independent occupational therapist specialising in dementia and she trains family carers and professionals in the SPECAL method. Shirley is a member of Woodley Baptist Church.

Contented Dementia by Oliver James is published by Vermilion.

For more about making sense of dementia through the Specal method visit www.contenteddementiatrust.org
 

Picture credit: "Woman Holding An Empty Picture Frame" by adamr/freedigitalphotos.net