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Karen Watchman (ed.), Intellectual Disability and Dementia: Research into Practice, Jessica Kingsley Publishers, London and Philadelphia, 2014, 336 pp., pbk £29.99, US $49.95, ISBN 13: 978 1 84905 422 5.

Published online by Cambridge University Press:  11 March 2015

DUNCAN MITCHELL*
Affiliation:
Manchester Metropolitan University, UK
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Abstract

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Reviews
Copyright
Copyright © Cambridge University Press 2015 

So many of the advantages of modern life seem to come with associated problems. People with intellectual disabilities, in common with the rest of the population, tend to live much longer than in the past and, like the rest of the population, are dealing with some of the consequences. In particular, there is a growing number of people with intellectual disabilities who also have dementia. The scale of the change is profound. When I trained as a nurse in the early 1980s, I was taught the already out-of-date wisdom that people with Down syndrome rarely lived past their mid-forties. Life expectancy for people with Down syndrome has been extended, and what a welcome thing it is to see so many people living to enjoy old age.

This book examines one of the consequences of people living longer, as one of the most significant things that has followed this changing demographic is the rise in the amount of dementia seen among people with intellectual disabilities. Karen Watchman has brought together an impressive group of experts to explore this change. Drawing lessons from international experience, Watchman hopes that countries will learn from each other, especially those that are only just beginning to benefit from the longer lives of people with intellectual disabilities. This is a common plea for people not to repeat the same mistakes of others in this field. But what mistakes! I was struck when reading the book that in the United Kingdom we continue, almost habitually, to repeat things that have gone wrong in relation to the health of people with intellectual disabilities. Whilst report after report has identified the need for better health care for this group of people, who despite their increased longevity still die younger than the general population, we continue to come across really poor services. Examples within the book will be familiar to many working in the field and include significant numbers of people with intellectual disabilities who do not have the correct prescriptions for spectacles, or undiagnosed hearing loss.

The book is divided into three main sections that each cover a question: What do we know? How do we know? What are we going to do? In addressing the first question, the authors review the state of knowledge about the incidence of dementia among people with intellectual disabilities. After this, the chapters address current understanding of diagnosis; pharmacological and other interventions; and finally a chapter on enhancing psychological wellbeing. This section provides a useful review of our current knowledge and should be invaluable to those working with older people with intellectual disabilities. It was striking, however, that the authors stressed that knowledge is far from complete and that most research findings are ambiguous. This area clearly requires a great deal more research.

In the second section the focus changes to the question of ‘How do we know?’ This examines the accounts of people with intellectual disabilities themselves, as well as family experiences. Yet again, there is a dearth of material to draw on that links both dementia and intellectual disabilities, and this is despite the amount of work that now exists about personal accounts of intellectual disabilities. As well as being interesting stories in their own right, the advantage of hearing from people themselves is that there are some really helpful insights into how services need to change to meet the needs of individuals: such as involving people in making plans for their own future, as described by Blackman and colleagues in Chapter 7 (p. 123).

The third section considers ‘What are we going to do?’ and looks at service planning as well as individual approaches. Refreshingly, the authors all start with the premise that services should be person centred and that there is no need to take a different approach for people with dementia. From the simple but crucial message about breaking bad news that ‘not telling someone about bad news doesn't make the bad news disappear’ (p. 187), to the reflective accounts of mistakes and success by people who have provided services, the section contains plenty of helpful advice for people with intellectual disability and dementia.

I have no hesitation in recommending this book to anyone interested in adults with intellectual disabilities, or older adults generally.