Book Reviews

Enriched Care Planning for People with Dementia
By Hazel May, Paul Edwards and Dawn Brooker

This is perhaps the first publication with Dawn Brooker in her new role as Director of the Association for Dementia Studies at Worcester University - an exciting venture in which we wish her every success. The work comes from her time with the Bradford Dementia Group and carries a recommendation in the foreword from Murna Downs who edits the Good Practice Guide Series.

I felt less than comfortable in digesting ‘in the field' three times over within the first seven lines of the introduction, but this proved to be a false concern - the style opens up and covers a good deal of ground with elegance and enthusiasm. The opening chapters review something of the background to current approaches to therapy and care of people with dementia, moving quickly into the practicalities of preparing profiles of individuals so that activities can be constructed from a well-informed baseline.

Templates for Life Story, Life Style and Future Wishes, Personality, Health, Capacity for Doing, Cognitive ability and Life at the Moment are described and explored. They are supported by example sheets of how materials can be collected for each dimension individually and collated in summary form to aid planning and monitoring of progress.
Chapter nine is brief, but outlines how the materials can be used to produce an Enriched Care Plan and refers to the acronym principles of communication: SMART (Specific, Meaningful, Agreed, Realistic, Time-based) and philosophy: VIPS (Valuing, Individualised, Perspectives, Social).

The whole ties things together very neatly and the book will be treasured by those who use it. Let us hope that this will be many, for these pages will help people turn good intentions into good practices.For the most part, this and similar texts are aimed at helping improve care of people who are living in groups within residential settings. Yet the message, whilst quite properly addressing therapy for individuals as individuals, does little to consider how the resulting plans can be woven together to achieve a good and sustained programme for the changing group and within the constraints of realistic funding and staffing. Perhaps this is dealt with elsewhere in the series.

Current insights have been developed out of the work of previous generations of dedicated workers in association with families and patients; for this we are grateful.
More will be learned in future years and we shall see statements of the art 2009 as important steps on the climb toward enlightened care.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Touching the Rock: An experience of blindness

By John M. Hull

This is not a new book, nor is it about dementia. I am offering comments on it because it has only recently become known to me and I feel it has messages which are helpful and relevant to us in our efforts to understand the experience of the disablements produced by dementia and how best to help a person thus altered and impaired.

John Hull writes as someone who was born with normal vision and developed sight difficulties and eventually blindness as a young adult. Professionally he became a successful academic theologian.
In many ways his account of sinking into blindness and living with blindness bring back to me Robert Davis' account of his ‘Journey into Alzheimer's Disease'.
From the introduction he shares some of the questions which will occupy him.
How will the children discover his blindness and what will they make of it?
What will happen to dreams?
Dreams emerge as a great comfort and they are terribly important to him.
He asserts that blind people differ - one from another - just as much as sighted people do.
So there are learning points already in a quest for understanding life with an incompletely functioning nervous system, be this from single-channel sensory loss or the multi-axial impairment of dementia.

He explains how loss of the dimension of seeing reduces the span of his comprehension of the world around him. Wind has taken the place of the sun (p16) and thunder provides a roof over all. That white stick is not a coloured walking support but an antenna: reaching, feeling and touching for cues to the layout (p 14-15). Rain is a beautiful gift, filling space with meaningful sounds (p 29- and 131). Wind provides clues of shapes and relationships (p117-118). Touch brings the most intimate of understanding: ‘the art of gazing with my hands' (p 174). Tastes and scents can also provide pleasure, though he complains that without the added stimulation of visual excitement and arousal, even food and sexual experiences are dulled.
As time passes and accommodation to blindness matures, he muses on the prospect that it might even be conceived a gift - a terrible gift (2005-207 and 215).

Redefined - ‘I am not blind (a negative construct relating to the normality of having sight) but rather ‘a whole body seer': A quite different and entirely positive representation.

Memory is truncated by loss of vision: faces of people known before its coming are preserved and appear in dreams; the faces of new acquaintances remain blanks in dreams and imagination.
The very concept of comprehension is linked by word-usage to sight: ‘I see' means ‘I understand'.
Time and space are reduced: activities cannot be rushed but need to be planned and conducted systematically. The permanence of space beyond reach is lost for it is evidenced only by sounds reflected and needing actions of one sort and another.
‘When there is rest, everything else passes out of existence. To do is to be.' (p 81-82)

The cumulative loss of control associated with what he terms ‘inescapable blindness' is most obvious in the social demands of personal and public life.
Kind and sympathetic people may treat the blind as children (105) or to be talked about rather than engaged with (112). Even a meal with his elder daughter becomes a nightmare as the waiter negotiates the menu through her - and they all three comply (167-168) to his inner fury.
Lost is the confidence of a shared world (131), even a sure grasp of what the self looks like (144):
‘Separated from my own shadow as in the cartoons'

Approaches, which give coordinates, are good; people asking questions or leaving uncertainties are annoying, and humiliating (158 and 169). ‘Hold me and tell me who you are!' said Robert Davis

Hull's discussion of walking is illuminating and stands careful comparison with that of Davis in dementia. For John Hull it is a source of pleasure and pride to walk and navigate his self, using whole-body seeing strategies. When in difficulty he wants advice as to where he is first - and from that he can construct his own map and make progress. Sighted people tend to want to relate to where you are going - for the blind person that's assuming too much. I need to know where I am before I can think of the next move (145).
Similarly well-intentioned attempts to help by warning of hazards - or a number of people offering alternative suggestions at the same time - are catastrophic and counterproductive.
Walking with someone is a pleasure - but take my arm and I am immediately disabled and dependent upon you from hereon - a faster journey, enlivened by discussion, but not one where I, as a blind person, can take responsibility for myself.
‘Walk with me' said Robert Davis when advising on how to help him overcome frustration and confusion. ‘Walk with me rather than try to help me with words.'
For John Hull too, walking and walking with people is blessed. But for him walking over and again in a familiar place is what brings peace. Novelty so beloved of the sighted is a headache without the assurance of personal vision.

The disciplined world of professional life and the organisation of his study provided calm and relief from the unregulated demands of social and family life. Parties and celebrations are difficult to join: Too much noise, too many unknowns, and so much awareness of being different.
On these occasions he might retreat to his study - or to bed. He describes the toxic effects of the overstimulation and the responses of his brain and body, which simply cut out, shut down and escape to sleep and dreams. For dreams remain visual, coloured and can contain a vigour and vitality beyond his waking competence. He wakes refreshed in spirit

Correcting some misunderstandings:
He rails at the pity expressed that he cannot experience the (visual) prettiness of a church - For he has taken pleasure (beyond others) in the beauty of its bells (194).

And the metaphor of pathways:
‘My blindness is the result of thousands of tiny accidental happenings. These were not a ‘path' and I was not being led along it toward blindness. Looking back I can see the chain of events, and it looks a bit like a path, but any trackless waste is laid out with paths once it has been crossed. When you look ahead there is no path but only an almost infinite number of possibilities.'
He talks of providence and coins the term ‘retrovidence' (paths conceived in retrospect).

Like Robert Davis who journeyed into Alzheimer's disease, John Hull speaks of his as a journey into blindness:
‘This is why I go on journeying, not through, but into.' (Final line - 218)

There is so much more here. It is hard to do justice to such a testament.
Oliver Sachs in his introduction puts it thus: ‘it has no clear beginning, middle or end; it lacks literary pretension; it eschews the narrative form itself - and is to my mind, a masterpiece.'

Aye to that: I am glad to have found it albeit belatedly and grateful for the pointers it provides to understanding and helping with other journeys.

Reference: Robert Davis (1989) My journey into Alzheimer's Disease. Tyndale House publishers. Illinois

Reviewed by Professor David Jolley
Dementia UK West Midlands

When someone you love has dementia
By Susan Elliot-Wright

Susan Elliot-Wright is not an expert in dementia or dementia care, but she is an accomplished writer. She has developed a sound understanding of how to share with people the sort of things they are likely to wonder about when faced with illness or other difficulties and she does this in a calm and readable style, avoiding hyperbole.
Thus this book is not campaigning but simply offering information in a digestible form, linked to some advice and providing directions to agencies, which have more expertise on particular topics.
It addresses aspects of life relevant to families who are caring for someone with dementia or where there is fear they may have dementia.

I take mild exception to some of her early words on the issue: ‘What is dementia?' and why it is important to go to your doctor.
The point is that people first experience symptoms (forgetfulness, uncertainty, bewilderment or anxiety) which are out of character and represent a change from their normal self. It is for assessment, investigation and differential diagnosis of these that people should and do come forward in the first instance. One of the possibilities is that such symptoms are evidence of dementia, but there are alternative explanations, some of which can be resolved.
I would also contest the assertion that the diagnosis of dementia or particular dementia illnesses such as Alzheimer's is difficult and can only be made at post-mortem. Most cases are reliably identified by clinical interview and examination, preferably by someone who knows the individual, their story and their family.
When dementia is confirmed, the pattern of life thereafter is difficult/impossible to predict for the prognosis is very variable - an open and attentive approach is what is required.

In making these points I am not wishing to be critical but gently supportive - for I can see how Ms Elliot-Wright has come to her understandings from the writings and perhaps comments of others - and I want to cue things toward the truth of the matters as I see them.

This is a well-researched and well-written short book, which knows its purpose and fulfils it. Many people will find it helpful - just what they want - maybe clinics will stock it as one of the resources available to families.
It is styled very much for carers and there are sections that would not be comfortable for a person with dementia

Professor David Jolley
Dementia UK West Midlands

The Wilderness

By Samantha Harvey

Is it gloomy'? said a friend when I said I was reading ‘The Wilderness', a novel by Samantha Harvey about dementia. Well no it's not. Harvey's book is about Jacob who had once been a successful architect and now in his late 60s has Alzheimer's. Sometimes it's a sad book, but never gloomy.

In the beginning Jacob is in the early stages of his illness. He knows that he's got it and what it's called. He struggles to understand about the plaques and tangles interfering with his brain. He remembers his late wife's name, Helen, although he can't remember how old his son is. He recalls incidents and episodes from his past, some seem important and some trivial, but he can't trust them and nor can we. Perhaps they are dreams or wishes or hallucinations? This confusion is deliberate on Harvey's part, it helps us to understand and empathise with Jacob's plight. If sometimes we feel as if we are losing the plot, so is he.

His doctor tests him to try and discover what stage the illness has reached. Those of us who have cared for someone with dementia - as I have - will be familiar with the questions: she asks him to explain the expression "people in glass houses shouldn't throw stones", to draw a clock face, to repeat three words - house, shoelace, picture. The ‘fox haired' doctor waits patiently. Jacob is confused by the glass house question, perhaps because he once built such a house. The clock face looks wrong even to him and he can't remember if he was able to repeat the three words. At the end of one session he is asked to draw a time line and mark it with the important events in his life. This device enables Harvey to describe his childhood, his mother, children and a love affair.

The story moves easily between the past and the progression of his illness in the present. We know that Jacob is getting worse when he gets lost in a city at night time. He wanders around wondering why the shops are shut for what might be hours, he doesn't know for how long, and nor do we. It's a haunting incident in this remarkable book.

‘The Wilderness' is Harvey's first novel and it's remarkable not just because of its accurate and sympathetic portrait of a person with dementia, but because it's also funny and insightful about family, love, loyalty and identity. In a sequence towards the end it's possible that Jacob has walked into the sea and drowned himself - but perhaps not; I wished he had because later on, when he has reached the third stage, he is in a home so that his carer can have a break. Although the staff are kind he is even more disorientated and ‘he spends his time getting up to look for his dog... he will not go to bed, he will not drink his tea, and he will not sing songs or play games.'

In the beginning Jacob is coping rather well, ‘There are moments when the sheer challenge of his illness feels blessed; he rises to it .......and the memories come sharp as shards from nowhere...' In the end he does not seem too perturbed that, when his son is showing him photographs, he can no longer recognise his wife, his children or himself.

I wished that he - and his carer - had had support of an Admiral Nurse to help guide them through the maze of dementia.

Reviewed by Diana Melly
Patron of Dementia UK

Take me Home: Parkinson's, My Father, Myself
By Jonathan Taylor

This is an unusual book in which the author, Jonathan Taylor, tells the story of his father developing Parkinson's Disease and with it Lewy Bodies Dementia. Jonathan was only eight years old when he began to notice that his father, who was very dear to him, was changing in many ways. His father began to forget some of his family's names, began driving badly and even mistook his son for somebody else. As is often the case his parents did not talk about it with him or his siblings, but left a publication from the Parkinson's Disease Society on the coffee table for them to discover. It shows how important it is to include children in all the important discussions affecting the family.

Intertwined with the account of his father's medical problems was a mystery. As Jonathan tried to find out more about his father's life, he found that he had a secret past, and that his previous family regarded him very differently from his present family.

The book speaks honestly about the role of caring, which I think other carers will find helpful. Although the love for his father is obvious, that did not stop him becoming very irritated at times and he found caring to be difficult.

I would certainly recommend this book as I have learned a great deal by reading it even though I myself have family experience of Parkinson's Disease. Take Me Home: Parkinson's, My Father, Myself is beautifully written, it is very sad but at times funny and is intriguing and educational.

Reviewd by Madeline Armstrong BSc(hons) RMN
Admiral Nurse

Person-Centred Counselling for People with Dementia
By Danuta Lipinska

Danuta Lipinska is a nurse who has become a counsellor and has experience of practice with older people and people with dementia in the USA and UK. Her work spans residential care and support of people still living at home.
She presents a short, deeply personal, account of the understandings she has gained together with practical hints to encourage and support others who seek to help people with dementia through professional one-to-one relationships. There are helpful references to the few leaders in the field: Brian Thorpe (who provides a foreword), John Killick (who offers an appreciation), Carl Rogers and Tom Kitson. But perhaps the most apposite quotation comes from Stephen Post (1):

‘(I) reject the notion: ‘I think therefore I am' and replace it with the less arrogant notion: ‘I feel and relate, and therefore I am.'

For this informs the whole of Danuta's approach. Hers is a closer, deeper encounter with each individual than that most commonly associated with Kitwood's Person-Centred algorithm, which is strangely most applied to persons en masse in residential settings. She rehearses a dismissal of measurement, but reflects that many individuals and their carers report benefits from six, six-weekly one hour sessions. Referrals inevitably come from others - often other professionals - but she is at pains to avoid becoming overly informed (prejudiced) by their communication to her, requiring primarily a vision of ‘Self' (sic throughout) from the person with dementia. I am not sure how much feedback is provided to the referrer, though Danuta acknowledges their importance in living alongside the individual and their own needs for understanding and support. There is particular reference (p 72) to Admiral Nurses.

She ascribes the counsellor role to ‘stand in the gaps' which the individual with dementia encounters - helping their exploration and perhaps achieving explanation and resolution out of bewilderment. A nice analogy and a cogent argument for providing a therapeutic, detached (affect neutral), professional empathy to complement, and hopefully relieve, the 36 hour day intensity of relating with close family members.

Chapter 6 spells out a systematic multi-dimensional approach to describing an individual. Within this she swipes (unreasonably I'd say) at mental health services, but gives welcome recognition to the struggles for survivorship from good lives as well as from hard lives and (perhaps unknowingly) contributes to the discussion of the virtue (or not) of ‘diagnosis':
‘the message seems to be that all the damage will happen in one fell swoop, like switching off a light, and now suddenly the person and all they have been and are and might be, no longer exists.'

Chapter 7 includes illustrations that confirm that the person continues to exist spiritually, emotionally and indeed cognitively even into the depths of dementia and will work with their counsellor to achieve not hope (which is a capricious desire) but peace and well-being.

Consideration of Kitwood's centrality of love together with spirituality, transcendence and other mystical and faith-based concepts dominate the final chapter.

This is a worthwhile read and certainly succeeds in making the point that people with dementia are people and should be respected as such - This for their benefit and ours. There may be a role for specialist personal counsellors within mainstream services. In addition the counselling approach and techniques described here can and should be adopted by professionals as a core component of their therapeutic armoury.

Reviewed by Professor David Jolley
Dementia UK West Midlands

(1) Post S. (2006) Respectare. Chapter 14 (p223-234) in J.C.Hughes et al (eds) Dementia: mind, meaning and the person. Oxford University Press

Early Psychosocial Interventions in Dementia: Evidence-Based Practice
Edited by Esme Moniz-Cook and Jill Manthorpe

This is an outstanding book and becomes available at just the right time. The National Dementia Strategy has encouraged extra interest in dementia and particularly in encouraging people to come forward for assessment with the expectation that they will be helped.
Currently available medicines have a little to offer - but only a little - The question is whether people skills and service strategies are of value to individuals and their families. The 16 chapters, with 36 authors from ten European countries, provide mature and well balanced, evidenced answers. They are illustrated with case stories.

It is important to tailor therapies and supportive measures to the particular needs of individuals and families - for some there is little need for much from the professional services, for others their experience and difficulties can be much improved by timely and appropriate interventions: timely is not always ‘as early as possible' - interventions too soon may perversely induce lower mood. Wow - this is very grown up - and grounded in international experience, laced with the discipline of evaluative research.
There is sensible consideration of the sharing of diagnosis - It is important to be sure what is being conveyed and why - labelling per se has nothing to commend it. Explanations - and iterative updating - are more helpful. There are chapters outlining the theory, practice and outcomes of rehabilitation, stimulation, computerised methods, psychotherapy, art therapy and reminiscence when working with individuals and groups to support and improve cognition. Approaches to support for carers as individuals or in groups by information sharing and emotional strengthening are described - It's no use just running a course and standing back - people need you to be there always - being available and flexible - soaking up some of the sadness and frustration, celebrating the fun and the triumphs. From this presence, more is learned and can be reflected to others. We all gain and progress this way.

This is a wonderful book and available at just the right time. Every Memory Service should have several copies to use as a framework reminding us what can be done - and what must be done. Teams can use them for shared study and planning. We can then add our own wisdom to the existing chapters and perhaps write a few more through the exercise of reflective audit and operational research.

Commissioners and managers of services should make themselves aware of what can be done and ensure that their community is properly provided for in the breadth of approach and sufficiency of staff, facilities and skills to meet predictable needs.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Understanding Alzheimer's Disease and Other Dementias
By Dr. Nori Graham and Dr. James Warner
Published in conjunction with The British Medical Association

This pocket-sized book is one of a series of medical books and can be bought from local pharmacies or purchased online at www.familydoctor.co.uk for £4.75.

Chapters in the book include What is dementia, Symptoms of dementia and Treatments for dementia. The descriptions are very informative, easy to read and understand, and include images, which help to make it very clear.

There are further chapters on getting help, tips for people with dementia and for their carers, future prospects and questions and answers. There is a lot of very helpful information, although I found the chapter on Getting Help rather optimistic. The information on benefits available were not quite accurate, for instance a carer cannot claim attendance allowance unless they have needs themselves, it is the person with dementia who may be entitled to attendance allowance.

I feel readers will find the chapter on Future Prospects and the description of how the brain works fascinating. There is also a comprehensive chapter on Useful Information, which includes organisations such as Dementia UK.

I would recommend this book as it is concise and contains a great deal of information.

Madeline Armstrong
Admiral Nurse
Dementia UK

Telling Tales About Dementia, Experiences of Caring
Edited by Lucy Whitman

Lucy Whitman describes herself as a writer and teacher. Her mother experienced dementia ushered in by a fall and fractured femur and was cared for by her husband with support from Lucy and her sister and from the statutory services until her death.
‘Dad did the caring best - stayed by her side'.
Lucy shares her frustration and anger at not being able to reverse the process: the futility and adverse effects of trying to make memories come back, mum's fearfulness and sadness at losing abilities and becoming dependent: not even singing, appearing not to retain her concept of God, looking only for her mother.
Nurses, doctors and social workers are criticised for not listening and not providing explanations.
Death comes as a release from the hell which Lucy felt her mother's life had become.
This story, along with the other twenty nine in this collection, is open, revealing and thought-provoking. Lucy believes the collection will be helpful to carers, the public and professionals. In this she does not specify people who themselves may have dementia. This might be wise for the balance here is very much toward the harrowing and hell of dementia, though there are some counters of humour and surprising positives - interestingly mainly via the insights and comments of patients.
The giving of the diagnosis of dementia is welcomed by most of these carers, rejected or never mentioned by the individual they care for.
Professionals will cringe as we recognise our shortcomings - the particular hazards of General Hospitals and many Care Homes are painfully highlighted. These are focus of considerable and considered media scrutiny at present and have the eye of policy makers and politicians aware of the need for sensitivity and popularity with an election approaching. But the embarrassment goes much further and centres on the need for appropriate attitudes to others - patients and their families, respect for equals and for those who have become less able, in every component of the care industry. We have become too compliant to bureaucracy and protocols: giving up our essential humanity. Yet it is this humanity which people plead for quite apart from our knowledge and knowhow.
The carers will recognise that they reveal aspects of selfishness and stilted preference for matters of intellect and modern fashion where older, simpler values are apropos.
Just being there as a comfort and a witness, reminder and protector to who this is rate higher than any flight of perfect prose.

The stories come from an atypical group of carers: 23 women and only seven men; eleven wives and nine daughters but only three husbands and two sons, four same sex partners/close friends. Twelve are academics or teachers and others come from caring professions or other middle class occupations. It may be that people so characterised by intellect are more at risk of distress and dismay in the face of its destruction whilst other attributes of the individual remain.
The accounts from same sex partners are helpful and draw attention to the work of the LGBT support group within the Alzheimer's Society. There are contributions from Black and South Asian family members. Most individuals with dementia spent time - often many years in a Care Home. Several authors have written elsewhere of their experiences and views. At least seven of the 28 individuals with dementia encountered their first symptoms before becoming sixty, one had Down's syndrome.
So the experiences are skewed toward those of Early Onset Dementia and even amongst the older people described survival is longer than the average for the condition. This is not to detract from the power and honesty of the messages conveyed - but to caution against transposing these experiences without interpretation onto the 800,000 people with dementia in the population of the UK.

Every one of these stories is a jewel-house of observation, dedication and feeling. Everyone can and should be used to teach us as individuals and in reflective groups - be we informal (family) carers or professionals. The book lends itself to the role of teaching course text and surely will be purchased in large numbers for this. That would see it achieve some of its aims through its effects on individuals.

Can it make an impact on the size and shape of services? If so what would the changes be?
In keeping with the aims of the National Dementia Strategy:
More awareness of dementia as a phenomenon by media and other initiatives: no problem
Facilitation of assessment and diagnosis: there are several accounts of delay and error in achieving an accurate diagnosis. These are certainly not limited to failings in General Practice (which is a basic assumption within the National Dementia Strategy). It is essential that people with problems of any nature are properly investigated without delay and there are strategies in place which should ensure this.
Better services for people with dementia once diagnosed: it is here that the messages are most strong.
• Choosing, training and supporting staff to be culturally competent and tuned to be attentive and respectful to patients and family is perhaps the first call.
• Providing individually tailored and flexible arrangements for care is the next: noting and making specific facilities for the special requirements of younger people with dementia and people whose culture or language differ from the mainstream.
• Seeing people through, with continuity and readjustment of care in response to changing needs of the individual and in keeping with their family's wishes
• Restructuring General Hospital services so that they fulfil their important role in the spectrum of services for people with dementia
• Revision of Care Homes so that they can attract, train and retain appropriate staff and involve families and other people from the community in their work.
• Make funding fair rather than punitive

This is a wonderful book which we must be thankful for and make good use of.
The glossary is appropriate and convenient. The web links and additional reading suggested are helpful - though I'd wish to add Robert Davis' My Journey into Alzheimer's Disease and Alan Bennett's Untold Stories to the list: they are the very best reads on the subject.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Still Alice
By Lisa Genova

This novel is a very moving account of how Dr Alice Howland, a Harvard University lecturer begins to develop young onset Alzheimer's disease aged 50. She is married with three grown up children. Her husband is also a university lecturer.
It begins by describing very early memory lapses and word finding problems, getting lost in familiar places and increasing struggles to carry on with work. Alice seeks to find a diagnosis initially without her husband's knowledge.
The book explores the difficulties the family members have in coming to terms with what is happening to Alice and changing relationships within the family. This is particularly evident in Alice's relationship with her daughter, Lydia. Lydia is hoping to be an actress, which has caused some difficulties and arguments with her mother: as her mother's dementia progresses Lydia and Alice form a much stronger bond and Lydia, of all the family, seems to have the clearest understanding of her mother's needs.

Alice is very skilled at problem solving and uses her Blackberry as a memory aid very successfully for some time. There is an incident in the book where the children argue in front of Alice about her, as if she's not there. One daughter, Anna, believes she should ‘exercise her memory' rather than use the Blackberry. Her son, Tom, thinks she does not need to worry about remembering as they will remember for her, and Lydia feels she should use what works for her i.e. the Blackberry.

Alice has a daily ‘Butterfly Test' she carries out and has a set of instructions she must do should she be unable to complete the test. As the book progresses Alice gets less and less of the test correct but is unaware of this, feeling she is getting it right. When she finally gets to carry out the Butterfly she is unable to do it due to the progression of her disease. This to me touches on advanced directives and quality of life issues, how difficult these are and how situations change.
The book also shows how Alice struggles to hold onto the family in her memory and her difficulties in remembering who they are and also her fear of not knowing them. The last chapter shows Alice with her two daughters, the mother and the actress, Alice's way of helping herself to remember them.
Alice has an awareness of the short time she has and towards the end of the book there is heated discussion between the family about moving to New York as Alice's husband wants to work there. The children and Alice believe they should not move and are concerned about the detrimental effect this would have upon her. Alice had planned for a year sabbatical together with her husband. It seems that he does not pick up her feeling of urgency and time running out for them.
I would certainly recommend this book but you will need some tissues as at several points I found tears streaming down my face.

Reviewed by Loraine Butterworth
Manchester Admiral Nurse

Rights, Risks and Restraint-free Care of Older People
Edited by Rhidian Hughes

I am afraid I have made heavy weather of this book. It has taken me 3 months rather than 3 weeks to get through its seventeen chapters. Part of this has been because of distractions to other things - but there has not been a strong draw to follow chapter to chapter. That is not to say it is a bad book. It certainly has much to commend it but it comes to me as rather earnest - approaching righteous - in repeating its message in support of freedom.

The thirty contributors come from the UK (11), USA (9), Germany, Norway, Australia, Canada, Belgium and Ireland. Their professional backgrounds include nursing (13) and Medicine (4), psychology, pharmacy, academia and management. Thus it provides an international and multi-disciplinary review and resource.
Contributions are organised helpfully into three unequal sections:
· Patterns and trends in restraint: addresses physical and medicinal restraints and the issue of covert use of chemicals.
· Health and Social aspects: provides a informative accounts of the practicalities and impact of changes toward reduced use of restraint in US services. There is a very specific chapter on the use of mittens and similar devices when patients in receipt of enteral feeding are at risk of pulling the tubes away. Shena Wylie's chapter on drugs in Care Homes will be widely referred to in support of the recent paper requiring a reduction in the use of antipsychotic medicines in English Care Homes www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303. Jim Ellis's account of the potential of companionship as a therapeutic alternative provides a refreshing and positive pointer to what can be offered instead of the drugs. Finally there are explorations of responsibilities within the frameworks of Health and Safety and Human Rights. Many practitioners will turn to these for guidance as they seek to remain safe themselves as they attempt to retain humanity within their caring whilst ever aware of potentially critical scrutiny and legal challenge.
· Issues and innovations: is a pick-and-mix within which ethics, de-escalation techniques, approaches to wander-walking and falls provide a selection of flavours. How do you help carers, professionals and lay, to modify their behaviours toward freedom? There are accounts of educational and training programmes and pointers to the evidence base which may be persuasive and that lovely quote: ‘Don't just do something, stand there'

The ‘Afterword' from Barbara Pointon is wise and brief, cutting directly to the crux and providing insights via humble self criticisms which stand strong and impressive in their own right (or write as John Lennon once said). She is a compass point in need of no further reference.

A useful resource for the bench library.

Reviewed by Professor David Jolley
Dementia UK West Midlands