A new report from the British Department of Health states that 5 people with dementia die in Britain every day due to strokes, many of which may be the result of antipsychotic drug use.
While strokes can have many causes, there are several convincing studies from around the world showing that people on newer antipsychotic drugs have excess stroke risk. (Canada recently had a large class action suit against one of the pharmaceutical firms for this.)
The UK has produced a “Dementia Commissioning Pack” for physicians, which they hope will help them begin to decrease the widespread use of these medications.
Of course, this begs the question, “If we cannot use these drugs for distress, what else can we do?” For that, I suggest you take a look at my book, and several others on the subject of person-centered care for people living with dementia.
I’m pleased to have had a wonderful five-column book review by John Killick published in the May/June issue of the UK’s Journal of Dementia Care. I hope this will help people to begin to see beyond “The Pill Paradigm” for distress.
Here’s the full review:
Review accepted for publication (in press) by the Journal of Dementia Care, c.2012 Hawker Publications, London, U.K.
SHOWING THE WAY FORWARD:
A doctor’s vision of the future
In recent years it seems as if America has been making most of the running in advancing the psychosocial approaches agenda. There has been the book The Myth of Alzheimer’s: What you aren’t being told about today’s most dreaded diagnosis by Peter Whitehouse, which examines the bias exerted by the collusion of the drugs companies with the Alzheimer’s Societies (reviewed at length by Kate Allan in the November/December issue of JDC). Then there was the book by John Zeisel which specifically looked at creative opportunities: I’m Still Here, and Forget Memory: creating better lives for people with dementia by Anne Davis Basting expounding similar approaches. There was also a book by someone with the diagnosis, Richard Taylor: Alzheimer’s From the Inside Out, outspoken and authentic, reinforcing the message from experience (all of these have received reviews in this Journal). Now we have Dementia Beyond Drugs: Changing the Culture of Care by G Allen Power.
In my view this is the most convincing piece of polemic of them all, for a number of reasons. First of all it is written by a medical doctor, so his overthrow of the panoply of arguments for antipsychotics carries especial force; it has this in common with Peter Whitehouse’s book, for Peter worked for the drugs companies before seeing through their strategies and joining the other camp. Secondly, it is the most consistently argued of all these books: in all its 242 pages of text Dr Power never for a moment takes his eye off the ball. Thirdly, it is grounded in real situations and people: it is packed with incidents and stories which lend authenticity to the advice offered; it also contains many quotations from people with dementia themselves, including telling selections from the books by Richard Taylor and Christine Bryden. Fourthly, it is beautifully constructed and written: you always know where you are in a complex pattern of ideas and it is a pleasure to read.
The structure of the book is as follows: Part One ‘Paradigms and Problems’ lays out the course to be followed in the rest of the text and then hones in on institutionalization and its strong link with the oversubscribing of drugs. Part Two ‘Shifts’ puts forward ‘The Experiential Model’ to counter the inflexibility and blinkered nature of the traditional nursing home approach. Part Three ‘Solutions’ takes specific areas of concern, such as communication, anxiety and aggression and applies the principles expounded in Part Two to them. Summarised like this it appears simplistic, but it is in fact, as I shall hope to show, a most thoroughgoing piece of work.
First of all, a word or two about the author. Dr Power is a Professor of Medicine and a geriatrician, and has practised for a quarter of a century, the majority of which time has been in the long-term care of the elderly. He is a proponent and practitioner of the Eden Alternative approach, and has been an Eden Mentor at St John’s Home in Rochester, New York for the past eleven years, and many of his examples and stories are taken from that practice. He is also an accomplished musician and songwriter. He is widely read generally (he quotes from John Maynard Keynes, Marcel Proust and Maya Angelou for example) and in the literature of dementia (he quotes from Tom Kitwood, Steve Sabat and Dawn Brooker for example).
Dr Power doesn’t go over the same ground as Peter Whitehouse in his examination of the drug culture. He takes that thesis as read and concentrates on the specifics of the misuse of drugs in nursing homes. His exposition of this, to someone like myself who is unversed in the technicalities, is both understandable and incontrovertible. Apart from his citing of research studies, he makes the crucial point that aging is viewed as pathology, which inevitably puts the emphasis on medical treatment. He speculates about how the situation would look if wellness rather than illness was the raison d’etre of the system. His main object in the book is to examine alternatives, and this he proceeds to do in multifarious ways. He addresses the problem of culture change in institutions head-on. He says:
I tell care staff that they are like fine musicians who are being forced to play their instruments while wearing gloves. They may hit a few beautiful notes, but much of the time, in spite of all their effort and care, they know they are not quite creating the music they want to hear. If we wish to truly spark a lasting change and free ourselves of our
constraints, sometimes it is necessary to “drop the gloves”.
He endorses a number of initiatives which attempt to achieve this objective, including ‘The Greenhouse Model’ in the States and ‘Spark of Life’ in Australia, but predominantly his illustrations are taken from the Eden Alternative, and his own experiences of it in practice. His emphasis is always on spontaneity and learning from experience. There are so many instances of this (‘telling’ in both senses of the word) that it is difficult to choose just one, but here goes. The point he is making is that it is important to give people with dementia the opportunity to choose at all times, and on this occasion on his medical rounds at St John’s, he questioned a woman who had only just arrived in the nursing home about the state of her health and whether she had any needs that were not being met. Her answers to these questions were bland and uninformative:
I decided to try one last question: “If you could do anything you wanted to do today, what would you like to do?” There was a brief pause, and I realized she might not be capable of answering such an open- ended question. But a much deeper understanding reached her, and her response was as instructive as it was surprising. She broke into a radiant smile, took my hand, and said “Thank you! Thank you so much! You are so kind!” Then she dismissed me with a look of pure serenity.
It took me a moment to realize what had just happened. I had hoped to try to grant a wish, and had unknowingly given her a much bigger gift. Her joy came, you see, not from choosing a special request, but from hearing that she could choose.
Probably the most controversial section of Dementia beyond Drugs is the author’s advocacy of the abolition of dementia-specific units. He admits he is really sticking his neck out here, but he argues his case with fervour. He sees no reason for having special dementia-friendly designs if they are not truly home-like. He sees confusion in the allocation of certain individuals to such units when the majority of other people in a nursing home may have characteristics of the condition, and he is against allocating staff with specific skills in this area exclusively to these units rather than using their talents more widely. He also questions the policy of moving people around in a home or between homes when their condition changes, which he characterises as disruptive for the people themselves, the relationships they have made with care-partners, and for relatives. But his largest concern is ethical: what right have we to classify people by their disease and segregate them from others? Is this not an infringement of their human dignity? An added advantage of abolishing the units is that we rid ourselves of the detestable titles we give such places, he avers.
As a writer I have always been convinced that the language we use to talk about dementia is an essential part of how we view the subject, and I was pleased to find this endorsed in Dr Power’s book. Not only does he reinforce his message at all stages of his discourse by the precise choice of terms, but he also deals with this issue. As he says:
If the biomedical model is inadequate, then terminology rooted in the biomedical view of dementia must be replaced with words that reflect a person-directed,
To this end he rejects ‘behaviour problem’, ‘symptoms’, ‘wandering’, ‘combativeness’, ‘delusions’, ‘paranoia’ and ‘hallucinations’. In the first of these he also wants the word ‘behaviour’ replaced by ‘expression of need’. And he wants the term ‘care-giver’ replaced by ‘care-partner’. It goes without saying that he would never be found committing the heinous ‘sufferer’ or ‘afflicted’ or ‘the demented’.
From the foregoing it is clear that I think very highly of this book. Does it have any failings? Well they are really faults of omission or emphasis. The largest of these is the concentration on nursing homes and the short shrift given to home and to hospital. Dr Power acknowledges the significance of these in his text, but that is different from dealing with them in any detail. His philosophy is applicable across the board, and yet it would appear from reading the book that most people with dementia live in institutions; it is perhaps the inevitable result of his own experience, but it does become necessary for the reader to compensate for this bias. The same is true of the emphasis on mental health at the expense of physical. Because of Dr Power’s mission to improve the former, and his determination to downgrade the medical, we hear little of the other conditions which have to be dealt with and which can impact on a person’s wellbeing. Then there are a number of aspects of life which appear to have escaped extended comment here. One is the issue of locked units; we needed to know how these fitted into his scheme of things. And though there is an extended consideration of the design of homes, there is insufficient about the provision of outside areas and their importance for the maintenance of health, both physical and mental.
I need to counterbalance the foregoing paragraph with a commendation of all those topics which do receive more than a mention and may perhaps be thought surprising to find in such a text: a juxtaposition of diabetes and dementia; the idea of social capital; lighting in the home; third-person speech; enhancing the experience of concerts. Within the limitations he has set himself in this book, the author ranges far and wide, illuminating many corners of the world with the searchlight of his intelligence and intuition: the Dr is not called Power for nothing!
This is a book which everyone concerned with dementia could profit from: it is a quite outstanding contribution to the literature. But for those in the care home sector it is an absolute must-read. However, I should warn you: it could change your viewpoint radically……..
Dementia Beyond Drugs: Changing the Culture of Care. G. Allen Power MD, Health Professions Press (2010) ISBN 978-1—932529-56-2