Signpost Book Reviews  Vol  10.2  October 2005

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The Perspectives of People with Dementia
Edited by Heather Wilkinson
Publisher: Jessica Kingsley Publishers, London 2002
ISBN: 1 84310001 0
Price: £17.95

'People clearly differ in the extent to which they are able to cope with the failing of their cognitive abilities'.
Tom Kitwood

That statement is from the groundbreaking Dementia Reconsidered (1997), and one can only wonder what Kitwood would have made of progress within research methods and motivations in the intervening years. Wilkinson's book is enthusiastically indicative of some of the more positive developments.

Passivity was not a concept for the progressive thinkers who formed the nucleus of the Bradford team: and here we have the logical continuation of their theories. By looking at ways to actively recruit, encourage and engage people for whom dementia is a here-and-now experience, the balance is being redressed.

Without such well-researched evidence a yawning chasm was opening, and although many had the insightful awareness, quite radical changes were needed to enable earlier diagnosis.

To some degree this indicates a shift in societal recognition and acceptance of dementia. This is given extra credence by Wilkinson who, in the introductory chapter (Including people with dementia in research) confirms previously held truths -"people with dementia experience the double jeopardy of being older people with a cognitive impairment …people with dementia remain a silent and excluded voice" (page 9)

Until recently, that is. Attention should be drawn to two seminal chapters, the sixth and the tenth, by Robinson and Pratt, respectively. Robinson's topic is the question 'Should people with Alzheimer's disease take part in research?' and her opening sentences are worth recounting here:

"I think it would probably be best if I started off by explaining who I am, a little bit about my background, and also how I came to be diagnosed with Alzheimer's disease. My name is Elaine, and I am 45 years old"

(page 101) -an undeniably chilling, sobering, powerful and stunning opening.

Being based on her experiences of conducting interviews, Pratt's chapter is encompassed neatly in its title, 'Nobody's ever asked how I felt'. Elsewhere writers address data collection, ethical issues, institutionalised care factors and user panels, before moving from practicalities to individual views and methods and motivations.

I began by citing Kitwood, who used to indicate that research should literally give those experiencing dementia the opportunity to express themselves. Various user groups across the mental health spectrum have been encouraged to voice their opinions. This book is long overdue, which makes its importance and relevance all the more telling.

A core of the contributors have links with the University of Stirling - this book is an achievement with which all concerned should be justifiably proud. It will be utilised by many health care professionals to enhance their knowledge and understanding.

Stephen Weeks BA (Hons), RMN, CPN based at Ossett CMHT, South West Yorkshire NHS Trust.

A review of the medical literature, Dr Ashley Cochrane
Publisher: University of Stirling, 2004
ISBN:1857691822

This book, written by Dr Ashley Cochrane who is a Consultant in Old Age Psychiatry, is in a series of books that have been published by the Dementia Services Development Centre at the University of Stirling. In introducing the book, the author says that there is a lack of research into patients who have dementia and epilepsy combined. Epilepsy and dementia carry a social stigma, both in the patient's and public's eye. Epilepsy is the most common neurological disease with 50 million sufferers worldwide.

A report by the Scottish Intercollegiate Guideline Network in April 2003 stated that 90% of people suffering from epilepsy wanted more information about the disorder and services available.

The author goes on to say that seizures are a feature of Alzheimer's Disease, usually in the late/severe stages. She explains that the underlying neurological changes lead to focal seizures that are generalised to tonic clonic seizures. The risks of developing seizures is 6-fold for patients with Alzheimer's and other dementias compared with people in the general population of a similar age.

Cognitive impairment can arise secondarily as a consequence of unresponsive epilepsy and also from long term anti-epileptic use though this is less of an issue with newer anti-epileptic medication. The author explains that both epilepsy and dementia can co-exist and therefore the diagnosis can be difficult. An example is the relatively uncommon transient epileptic amnesia (TEA). The author points out that epilepsy should be considered as a possible cause of "pseudodementia".

It is a short book of some 86 pages with 17 chapters. The chapters cover the demographics of both dementia and epilepsy, the classification of epilepsy and the classification of dementia. Chapters are clear and simply written. The chapter of the classification of memory is quite brief and I would suggest that the author has condensed the information too much. There is a chapter on epilepsy in older age which deals with status epilepticus, the aetiology of seizures in the older population in general, seizures that occur in Alzheimer's disease and also seizures associated with alcohol abuse and head injury. The section on head injury quotes brief findings from several papers however it is not clear how these findings relate to elderly people.

The chapter on issues of diagnosis of epilepsy in older people emphasises the consequences of an elderly person having seizures and how it can restrict mobility and independence as a result of falls and injuries.

The chapter entitled 'epilepsy and dementia' -the overlap is, according to the author, the essence of the book however she points out that there are few studies in the medical literature. The studies show that 10% of patients with advanced Alzheimer's disease have seizures and 92% of these seizures are generalised tonic clonic seizures that are due to the cortical damage due to the neurodegenerative processes that are causing the dementia. This contrasts, with the common presentation of first onset epilepsy in patient's over 60 years, which are complex partial seizures.

In the chapter on cognition and epilepsy the author deals with the neuropathology, the effect of the epileptic discharge and also the effect of anti-epileptic drugs on cognition. The central message of the author in this chapter is that anti- epileptic drugs can cause cognitive impairment and the elderly are particularly at risk. Cognitive impairment is less in mono-therapy and if the drug is kept within the therapeutic range. Seizures can however cause cognitive deficit and therefore seizure control can improve cognitive deficits.

There is a chapter describing and comparing transient global amnesia (TGA), transient epileptic amnesia (TEA) and psychogenic amnesia. These are quite uncommon conditions and the author does not make clear just how uncommon they are. There is also no mention of any relation between TGA:s and TEA:s and transient ischaemic attacks which I think would have been quite helpful.

In the chapter on investigation of epilepsy, the author discusses some of the issues around the EEG and certainly the limits of this investigation. Mention is made of periodic lateralised epileptiform discharges though this condition is not well explained. A better section is where the author is discussing scanning in the investigation of epilepsy. She points out that the MRI scan is the investigation of choice though a lot of centres are not able to offer this. CT scanning itself will pick up 80% of underlying lesions. SPECT scan and PET are not recommended as they inadequately assess the structure of the brain.

The longest chapter in the book is the chapter on drug use and treatment of epilepsy in older people. It is also the most comprehensive chapter and perhaps the most useful. It deals with practical issues of how the anti-epileptic drugs work and their side effects and interactions and presents a useful guide as to which drugs are the treatment of choice. It also deals with treatment of refractory seizures and also when and how to discontinue anti-epileptic drugs. The author states that there is no documented interaction between the anti-epileptic drugs and cholinesterase inhibitors but does not discuss evidence of treating patients with epilepsy with cholinesterase inhibitor drugs given that seizures are a reported side effect of these medications.

The final chapters deal with Government policies and services for people with dementia and epilepsy. These are purely descriptive as to what is available and though the author concludes by saying that what is requires is well co-ordinated care between primary and secondary services, nothing arises from this book as to how this may be achieved.

The book is said to be targeted at GPs, geriatricians, psychiatrists and nurses who care for older people especially older people with dementia. It comes over as written in lecture note form and briefly summarises the information. To be understood the reader certainly has to have some prior knowledge of the conditions and topics and would not be suitable for general readership. It is, however, a very useful Introduction to the topic though the detail in it may not be sufficient to inform a candidate who is doing post-graduate medical exams.

I think the best recommendation I can give is that having read the book I felt that I had learnt quite a number of things and feel better informed about the topic.

Consultant Psychiatrist for the Elderly Barry Hospital, Vale of Glamorgan Wales

People with Dementia in Acute Hospital Settings
Author: Carole Archibald

Publisher: University of Stirling
ISBN: 1 85769 158 X
Price: £12.50

This book's stated aim is to review current literature to inform nurses about the issues that may arise in this situation, and it 'does what it says on the tin'. As a Specialist Liaison Nurse working in this area, I welcomed the opportunity to find out some of the literature that was available, with minimal effort on my part. The book is easy to read, well laid out and a handy size, very user friendly.

The author begins with an introduction to the types of dementia and person centred care, ends on delayed discharge and touches on context-policy and practice etc, but I found by far the most useful chapters were those on challenging behaviour, delirium, and hip fractures.

When reviewing the literature on challenging behaviour, the author points out that the term is not generally used to describe behaviour such as withdrawal, eating disorders and depression. However, all these latter behaviours are very challenging for the sufferer, and can have a significant impact on the well being of people with dementia. Wandering is discussed and some tips given on managing such behaviour. Possible reasons are given for challenging behaviour and the importance of finding the cause emphasised.

The largest amount of literature presented was on delirium, probably reflecting the large amount of patients admitted to acute medical wards with this condition. A wide selection of pertinent issues are discussed, including predisposing factors, detection, assessment scales, causes and interventions. It's all there and very useful to both those who have experience of nursing people with dementia, and those who don't. The author notes that the available literature is not always specific to dementia, and that delirium is often unrecognised. Unfortunately, the prognosis can be poor for a person with delirium and dementia, making earl) recognition vital. An interesting study found that in a large proportion of cases of delirium superimposed on dementia family carers had noticed significant changes in the person's cognition, but staff did not recognise this. My experience would certainly confirm that when a person with dementia presents with delirium, it is often seen as a sudden deterioration in the dementia, rather than physical in origin I liked this chapter, there's a lot of material to delve into and it's quite comprehensive.

Hip fractures lead to loss of independence and particularly so in the person with dementia, so the inclusion of this subject was highly relevant. A range of literature was presented, with most issues covered. Anyone working with the elderly would find this chapter thought provoking, especially the section on pain relief. It was suggested that pain relief is not given routinely to people who are quiet and uncomplaining, although that is exactly how many people with dementia may present in a strange environment. My experience in relation to pain relief for people with dementia, is that it isn't always given appropriately and I was quite saddened to note that the literature reflects this.

This is a useful little book for those wishing to get an overview of issues relevant to people with dementia in acute hospital settings. I think it would be a valuable addition to the bookshelf of any medical ward or GP practice.

Specialist Liaison Nurse

Mental Health Services for Older People Cardiff and Vale NHS Trust

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