Contentment or terror?

by
18 October 2013

Does dementia have to be a descent into hell - or, if handled well, can it offer a foretaste of heaven, asks Shirley Pearce

Contented dementia trust

Sensitive: Penelope Garner, who has developed the SPECAL method 

Sensitive: Penelope Garner, who has developed the SPECAL method 

AS A Christian and a mental-health professional, I have sometimes felt as if I am living in two opposing cultures. But recently, in acquiring a better understanding of dementia through my work, I have also gained a new insight into my faith.

Dementia seems to have become the new taboo. As with cancer in the past century, it has such a stigma that one dares not speak its name. The assumption is that once dementia has been diagnosed, the progression of the disease will entail a relentless stripping away of reason, intellect, personality, and relationships.

In my early work in memory clinics and the local community mental-health team, I used to encounter both patients and carers who were terrified of what was over the horizon. Nobody could tell them what dementia would really be like; so they assumed that it must be too awful to think about, like Milton's "brink of Hell" in Paradise Lost. If nobody could advise "what best may ease the present misery, and render Hell more tolerable. . .", the best that they could hope for was early oblivion.

As part of my job in the memory service, I used to run support groups for people in the early stages of dementia, teaching strategies designed to improve their memory. Such strategies proved of limited value, however, given the increasing inability of group members to retain new factual information; their memories did not improve, and their feelings of incompetence and frustration became worse.

I also ran a support group for carers, and it was there that I first heard of the book Contented Dementia [Vermilion, 2009], by the psychologist Oliver James, about the SPECAL (pronounced "speckle") method of managing dementia developed by Penelope Garner. On reading it, I began to see dementia in a new light.

Oliver recounted Mrs Garner's experiences as she cared for her mother, who had dementia. For Mrs Garner's mother, Dorothy Johnson, her memory loss was not much of an issue when she was with her daughter, but it became a huge problem in the presence of her husband, with his constant attempts to "put her right".

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IT IS well known that, even for those of us with normal memory function, stress can interfere with our ability to remember things. This is what was happening to Mrs Johnson. Her daughter was able to provide a virtually stress-free existence, which maximised her abilities, whereas her husband, with the best intentions possible, constantly reminded her of her failings, and thereby exacerbated her memory problems.

Mrs Johnson remained unusually articulate, even as her dementia progressed. Mrs Garner began to understand that her mother was having to use old information from pre-dementia days to make sense of her current surroundings, because more recent facts were simply not available to her. This was putting her out of step with others around her, unless they understood.

It is not the disease process itself that destroys the ability of the person to cope; all too often, the real harm is done by well-meaning care that takes no account of the experience of the person with dementia. We repeatedly attempt to reorientate people with dementia into our reality; to insist that we know best, and what they believe is wrong, and fail to see how that must erode their self-esteem.

People with a lifetime's information and expertise can feel slighted when their remarks are considered at best irrelevant, and at worst, repetitive nonsense. Too often, people with dementia do not feel valued by their nearest and dearest, who, in the daily struggle to keep them fed and watered, and clean and safe, keep reminding them how dependent and out of step they are.

 

AFTER reading the book, I decided to attend a training course on the SPECAL method run by Mrs Garner at the Contented Dementia Trust, and there I began to get a better understanding of my patients than I had ever had before.

Mrs Garner uses the analogy of a photograph album to represent our memory system. As we go through life, each experience is stored as if it is a "photograph" in our "album". Each photograph contains both the facts of what has just happened, and the associated feelings. We constantly refer to the most recent photographs to help us to make sense of our current situation.

As we age, everything we have experienced continues to be stored in our album in the normal way, but we become slower at finding the photographs that we need. Sometimes, we become so slow that by the time we find what we are looking for, its moment of usefulness has passed. This is normal ageing.

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When dementia begins, however, a new type of photograph begins to appear in the person's album, providing them with the feelings of what has just happened but without the associated facts. This type of photograph is called a "blank", and, over time, more and more blanks are stored.

 

PEOPLE with dementia have to search increasingly further back in their album to find normal photographs, in order to make sense of what is happening in their life on today's page. This is often difficult for those around them to understand, and carers may assume, wrongly, that the person is going insane.

With the understanding of the SPECAL photograph-album analogy, some of the things that my patients had tried to explain started to make sense, and I began to see how I could work with their dementia, instead of trying to fight against it. This was a revelation to me; and constant repetition of their old memories and favourite sayings - things that I had merely put up with in the past - now became a useful resource.

As I became more observant, the minutiae of conversations and gestures revealed fascinating insights into their lives. I discovered that most people have something in their past that has been a source of pleasure and fulfilment, and that by referring to that, I could engender feelings of well-being and achievement in place of failure and dread. And, since new facts were rarely being stored, those positive experiences could be recycled endlessly without the person becoming bored.

Children discover that playing their favourite game or singing their favourite song over and over soon becomes boring and repetitive. Not so for the person with advancing dementia, who is not storing the factual repetition; for them, it is the feelings that are being stored. Feelings become more important than facts, so that once they enjoy something in the present, they can do so again and again without risk of boredom.

 

THIS insight has helped me to understand, for the first time, John Newton's hymn "Amazing grace" when it talks about heaven thus: "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 first begun."

I first heard this hymn as a child, and I always thought that, even if we could choose our favourites, surely all that hymn singing would get just a bit tedious after the first 9999 years or so. But now I am beginning to understand. Just as dementia makes joyfulness repeatable, I believe that heaven will also be full of experiences that feel new and exciting, and time will mean nothing.

In a surprising way, working with dementia has helped me to see that there will be no sense of boredom in heaven; and that the glorious feeling of having just arrived in that wonderful place, and set eyes on our Lord and Saviour, will never fade.

Shirley Pearce is an independent occupational therapist specialising in dementia

www.contenteddementiatrust.org

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