Yesterday’s announcement of a national campaign to increase understanding and awareness of Alzheimer’s could have been very good news. There will be £2.4m of government money given to the Alzheimer’s Society (AS), initially to train 6,000 Dementia Friend volunteers. It is hoped that they, in turn, will go back to their communities and create 1 million people in the population with greater awareness – “dementia friends”.
Alas, this is going to be a case of a wonderful opportunity missed. The core problem with Alzheimer’s and most dementia cases is that the person is no longer storing short-term memories. By the time they receive medical care, the vast majority are already in the mid or even late stage of the illness. Frequently they cannot recall what happened from more than 30 seconds ago. However, there is very solid evidence from brain imaging studies that their long-term memory is nearly always fully, or largely, intact.
Now, imagine that you cannot remember anything from more than 30 seconds ago. You may have no idea who you are talking to or where you are, let alone the time or day of the week. As my mother-in-law, Penny Garner, discovered 20 years ago when she was developing her revolutionary “Specal” method of Alzheimer’s treatment, what people with dementia do to make sense of that situation is totally logical and sane: they use their long-term memories.
Leafing back through the photograph album of their memories, they look for something that matches their present situation. On finding it, they use that scenario, often from more than half a century ago, to explain who is around them and why they are there.
Of course, unless it is understood that this is what is happening, that leads to major problems. When their relatives or friends or carers start being called by names they do not have, or the person with dementia expresses annoyance that they have not yet left for “the football match” or “to get to work”, they assume the person has gone mad.
But as explained in my book Contented Dementia, detailing how to use Garner’s method, it does not have to be so. As long as those around the person with dementia understand what is going on and respect their reality, including colluding with it, there is no need for distress.
For that vast majority of sufferers who are in mid or later stages, three golden rules need to be followed: never contradict the person with dementia (because you are effectively denying their current reality if you tell them there is no football match or that you have a different name from the one they are using); never ask questions (because they require short-term memory for the answers); and learn to love their repetition (because if they keep returning to a happy place from their long-term memory, it is fine).
These rules should never be applied to someone with early stage Alzheimer’s, but the proportion of people identified at that stage is minuscule. For the vast majority, Penny’s Specal (“specialised early care for Alzheimer’s”) method is best, and 45,000 purchasers of the book on the subject would seem to agree.
All this could be delivered to the million people whom the AS are targeting as dementia friends but there seems no hope of that happening. Instead, it is very far from clear what is going to be done, beyond a fuzzy goal of increasing awareness of the illness and destigmatising it.
When I contacted the Department of Health, they told me that “the details have not yet been worked out” regarding what will be delivered in the training sessions. The AS told me that they have not decided what will be taught or how, only that their first step is going to be to consult widely to find out the best methods and what the general public want. There is no chance of the AS teaching the Specal method – not that it is qualified to – as it is implacably and unforgivably opposed to the method on wholly specious grounds.
Meanwhile, there remain no evidence-based methods for managing Alzheimer’s which improve wellbeing (the AS and the psychological establishment have blocked all attempts to have the Specal method tested scientifically). Half of people with Alzheimer’s are administered anti-psychotic drugs on the mistaken assumption that they have gone mad. A quarter of them die prematurely as a direct consequence of being given these drugs.
It’s a crying shame that an opportunity to educate the public about the real nature of Alzheimer’s and the ways to avoid it becoming hideously distressing (resulting in the administration of toxic anti-psychotics), is going to go begging.
