In her prime, Dorothy Johnson was quite a woman. Not only was she an international bridge player, an active social organiser, she was entrepreneurial in the way she thought.
But, what happens when someone like this, who was known for her intelligence, suddenly develops dementia? Is there something of that original sharpness of mind that can somehow overcome the crisis of the mind?
When, at 59, Dorothy started to show symptoms of dementia and simultaneously to provide illuminating chinks of information about what was happening to her, her daughter Penny watched and listened attentively. She remembers the day Dorothy, feeling agitated, stood in her kitchen brandishing a milk bottle and asking where the fridge was. "I wouldn't be asking if I didn't need the information," Dorothy explained.
Over the years Penny made a series of observations that has enabled her to develop a pioneering new treatment for all forms of dementia. Called ‘Specal' (Specialised Early Care for Alzheimer's), which is also the name of her charity, based in Burford in Oxfordshire, it revolves around her insight that while people who have dementia cannot store new facts, they can store new feelings. That is the key. When the mind can no longer store new facts - because of protein loss in the brain - feelings are the essential ingredient.
Carers must understand that there is absolutely no point, however well-meaning, to point out something the sufferer has forgotten, e.g. that today is Monday and they have forgotten to do something. Much better not to challenge them. Instead bypass what they can't remember and tune in to their long-term memory, which is still functioning as brain scans have proved, and use that to make emotional connections that enable them to make sense of the present. The carer's job in this situation is to make the sufferer feel content.
What is clear is that sufferers often haven't lost their ability to reason, they've simply lost the information that other people around them are using to reason with. But they do have some long-standing facts in their memory, which can add to their self-confidence. These facts are often accessible, but can't be reached when the sufferer is stressed. Carers should never forget the original person locked inside, their challenge being to keep the person in touch with language and information that they can still understand. Think of your life like a series of images and memories in a photograph album that we use to make sense of what is happening to us. For someone with dementia the recent pages are blank, the old pages much more complete.
‘Specal' focuses on this stored information from the past, when the person was capable and felt in control, and uses that to engender feelings of contentment. If you argue with them about their inability to recall the present you're kicking that away, pointing out their disability and rendering them incompetent. The carer has to understand that it's he or she who has got to change.
Last year Oliver James, the clinical psychologist and Penny's son-in-law, explained ‘Specal' in a book called Contented Dementia, which has now been presented to the Shadow Health Minister, Lord McColl of Dulwich, in the hope that ‘Specal' will become part of a future Conservative government's policy. Getting the ‘Specal' programme into nursing homes and local authorities would be a far more humane way of treatment than the current reports of top-heavy sedation that takes place in many care homes.