Alzheimer's and SPECAL
Read our full position statement on SPECAL
Flicking through the pages of the Alzheimer's Magazine about a year ago, I noticed an advertisement for SPECAL. It offered a new approach for Alzheimer's which could turn around the experience of Alzheimer's type dementia for everyone. It would improve the quality of life for people with Alzheimer's 24 hours a day, every day for the rest of the person's life. Lifelong well-being for people with dementia. This just sounded too good to be true.
As a family, we were looking desperately for anything that we could do to help my mother who had been diagnosed with Alzheimer's five years before. We were unable to find anything really practical to ease the situation. She was visiting a memory clinic for assessments, but little other support was available. Life was becoming intolerable, especially for my father who was her full-time carer.
The natural way of communication by questioning was becoming increasingly impossible and distressing. He had to help her physically with everything, could not leave her on her own and was living a very lonely life with her. Their roles had been totally reversed. She had looked after him for nearly 50 years and now he was completely untrained to do the same for her.
She was extremely frustrated and upset by her inability to remember things and process what people were saying to her, even at the most basic of levels (e.g. sit down, turn round - all very necessary when trying to go to the toilet).
We were desperate to find a way of helping her. My father was on the brink of a breakdown. The advertisement for SPECAL seemed to offer, what up until now, had seemed impossible. Well-being for the person with dementia and subsequent well-being for the carers. I rang SPECAL for a brochure and my sister-in-law and I attended a Photograph Album presentation.
We were sceptical that what was being offered, could really work. If it could, why wasn't everyone using it? After three hours of an emotional rollercoaster (which we were beautifully supported throughout), we had a significantly better understanding of what my mother was experiencing, not from a medical point of view, but from a lay-person's point of view.
We understood the damage we were causing by our questioning and constant referrals to the recent past. We then knew we had to engage other members of the family, specifically my father, whom we knew would be questioning the concept. If he wasn't prepared to take SPECAL on board, we would have a very difficult struggle, if not impossible.
My father went on a Photograph Album course and like us, was completely convinced of its merits. Without doing anything further, our understanding was already giving us all an easier life. As a result we decided to try the SPECAL route. I went on a few of the workshops (three out of the available 12) and my father organised for Penny Garner, Head of SPECAL, to visit Lymington and present the Photograph Album to friends, health care professionals and nursing home staff.
Over 70 people attended the presentation, with extremely positive feedback. Over the latter few months of last year, we worked very hard on trying to get the SPECAL approach right for my mother, with the support of SPECAL. As my parents did not live near Burford (the home of SPECAL), the work was mainly down to the family, which was a significant task.
We were extremely fortunate to have the support of the family and some friends so we were able to build a good team around my mother. Due to an infection, my mother spent two weeks in hospital and came home to a package of three visits a day. The support assisted my father greatly, and the carers were willing to try and use the SPECAL approach. My mother deteriorated significantly and so it was agreed that she would go into the nursing home of our choice in January.
We developed a detailed programme, followed by everyone, including the nursing home staff, and a 'care passport' to answer the core question, "What do I need to know in order to get alongside this person without relying on their recall of any information relating to the recent past?"
The success of doing all of this has been amazing: our family and friends, together with the nursing home staff, are extremely pleased and impressed with the transition and the way in which my mother is so content. In essence, SPECAL's approach trained us how to manage my mother's dementia in a remarkably successful way, giving her, we believe, a feeling of well-being and contentment.
I felt I should write this article so that the many people who are living with this dreadful disease, both carers and sufferers, should feel some hope that there is a potential way of coping with the disease. I have met many people who are as devastated as we were. I believe everyone should at least have the opportunity to access SPECAL.