Book Reviews
Carer's Experiences
Take me Home: Parkinson's, My Father, Myself
Telling Tales About Dementia, Experiences of Caring
Keeping Mum
Dementia and Mum, Who Really Cares?
Fiction
Information and Advice
Cognitive Behavioural Therapy with Older People: interventions for those with and without dementia
Spirituality and Personhood in Dementia
When someone you love has dementia
DEMENTIA from advanced disease to bereavement
Art Therapy and Creative Coping Techniques for Older Adults
Carer's Experiences
Dementia and Mum: Who Really Cares?
by Michael Fassio
We have a Big Society, an army of unpaid volunteer family carers, often unsupported, and forced to make tough decisions due to the inflexibility of our care system.
This book tells us the highly personal story of how dementia not only affected Renza, but her son Michael. Her journey is fairly typical in the fact that dementia eventually robbed her of independence. It could not however, rob her of the strong will and tenacity that enabled her to be heard.
Within the text I found funny, heart-warming moments, especially the visit to the Italian embassy! But it was the unremitting struggle of Michael's day to day experiences, trying to find solutions, as mums deterioration continued that resonated with me. As a reader I felt the exhaustion and wonder why more carers do not give up the fight to care sooner.
An estimated one million people, individuals like Renza will be diagnosed with dementia by 2025. A further one million carers will be thrust into this role. Should they really be so alone?
Irene Walker
Hull Admiral Nurse
Dementia UK
August 2011
Keeping Mum
By Marianne Talbot
This is an extremely eloquent and honest account of caring. Marianne describes very well the pendulum of emotions one can experience when caring, as it swings from devotion to despair in the blink of an eye. The surge of love one can feel one moment and then wanting to scream the next is, I am sure, something that many carers can identify with. There are, undeniably, an enormous amount of tips and useful advice, with beautiful humour injected throughout.
What I found very powerful was Marianne’s description of the events that culminated in her mother being placed in a nursing home. The admittance that the status quo could not continue and it was time to relinquish care. This is something that a lot of people who have cared for a loved one have struggled with. The feelings of guilt and that you are abandoning the cared for and yet you realize that you simply cannot continue in that role. I think Marianne’s account of that time will bring comfort to others, assurance that these feelings are not unusual and that you have permission to feel this way.
This is a collection of blogs and as such some of the sections were slightly repetitive. Perhaps it is intended to be dipped into now and then rather than to be read in one sitting as those who reviewed it did.
Marianne is obviously educated and socially competent and yet she had problems navigating her way around the various professionals and services. One wonders what hope there is for those who are less well resourced?
I think this is a useful book for professionals if they are failing to see what life is like from a carer’s perspective. However they might find the term “piglet” rather alarming!
One thing that I did find tangible, from beginning to end, was just how much Marianne loved her mother, always striving to do the very best for her.
I can’t help thinking how nice it would have been for Marianne to have had access to an Admiral Nurse.
Reviewed by Michelle McGowan and Sue McGown, Admiral Nurses, 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.
Reviewed by Madeline Armstrong BSc(hons) RMN
Admiral Nurse
Dementia UK
Telling Tales About Dementia, Experiences of Caring
Edited by Lucy Whitman
I found this book inspiring … The voices of carers are an important contribution to improving treatment and care and this book should be read by everyone supporting people living with dementia.
Bennett Mott, Nursing Standard Vol 24 No. 28 2010
There is much to be learned from these 30 moving and beautifully written stories of carers looking after people they love and who have dementia. The accounts are all very different and each has something special to tell us about the centrality of relationships and life histories in understanding and caring for anyone.
John Burton, Caring Times, November 2009
This is a powerful collection of first hand accounts by people who have cared for a person with dementia… The contributors are commendably diverse in terms of ethnicity, age, gender and sexuality. They include spouses, children, siblings and friends of the person they care for… Taken together these short stories are probably more effective than a shelf full of dementia strategies and books about person-centred care.
Ros Levenson, Mental Health Today, December 2009
Every one of these stories is a jewel-house of observation, dedication and feeling. Every one 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… This is a wonderful book which we must be thankful for and make good use of.
David Jolley MSc FRCPsych, for dementia plus, January 2010
These powerful stories should be read by everyone involved in health and social care, from commissioners designing services to those giving direct care and support. The accounts are moving, engrossing, sprinkled with quirky humour, and truthful… Vivid personalities shine through, reminding us that every person with dementia, every carer and every caring relationship, is different and individual, therefore services need to be sensitive, personal and flexible.
Sue Benson, Editor, Journal of Dementia Care
Telling Tales is a testament to human attachment, resourcefulness and humour in the face of immense challenge. It is a compelling read.
Beryl Hylton Downing, Speech & Language Therapy in Practice, Summer 2010
Fiction
When I visit Granny Jean
By Elizabeth Maltman
It is very difficult and upsetting for children when someone they love develops dementia. It is very hard for them to understand, and it can be quite frightening for them. This charming small book with 41 pages attempts to address this issue.
The book is beautifully illustrated and tells the story of a family going to a residential home to visit Granny Jean. The story describes Granny and other people with dementia at the home, and explains that she has forgotten their names and does not say very much, but likes walking all the time. It illustrates that there can still be a loving relationship between them all.
I did have a couple of small concerns, one was that when Grace the granddaughter asks why Granny got ill, Mum replied that it was like a battery running out, which sometimes happens when we get older. This might make children think that all older people will develop dementia. I would have preferred it to be made clear that it is an illness that some people get but that it is not catching. The other point was that there was a suggestion that the children could pop a fruit pastille in Granny's mouth, which of course could be dangerous.
However it is a very nicely written book, which my grandchildren enjoyed and according to them is suitable for 5 to 6 year olds.
Reviewed by Madeline Armstrong, Dementia UK Admiral Nurse
The Memory Cage
By Ruth Eastman
"I stopped dead. Alzheimer's. That's what granddad had. We all knew it. The whole family. It was some terrible swear word we could never say. Like that other word. Incurable."
These are the words of 13 year old Alex whose grandfather keeps forgetting things and whose behaviour is becoming more erratic. Alex is very close to his grandfather and is desperate to help him remember his past. He thinks this will help his parents to see that his grandfather does not need to go into residential care, something that fills his grandfather with dread.
With the support of his friend Lia, Alex comes up with a plan to put together a special scrapbook for his granddad to help him preserve his past, in as much a cage to trap and keep the memories. Alex's father does not want him to carry out this project and as Alex digs deeper into his grandfather's past he uncovers long buried memories and family secrets. However, as Alex's grandfather's health deteriorates it becomes a race against time to finish the book although help to do this comes from the local librarian and the vicar, not from the members of his own family.
The task is almost complete when a catastrophic episode takes place and almost puts paid to Alex being able to share his grandfather's past with his family. It is only when this happens that Alex's father admits most of the family have been turning a blind eye to what has been happening with granddad and from then on they all need to start doing their bit.
This is a beautifully written book and tackles head on the issue of dementia and the impact of Alzheimer's on both the sufferer and their family. It is handled in an extremely sensitive way and Alex's descriptions of the changes in his grandfather's behaviour and personality are not at all scary. This book is recommended for readers aged 10+ to young adult and would help a child, or even an adult, to gain further insight into dementia and the many ways in which to help a sufferer .
Reviewed by Francesca Thomas
Member of Uniting Carers
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
Information and Advice
Cognitive Behavioural Therapy with Older People: interventions for those with and without dementia
By Ian Andrew James
This is an immensely ambitious book aiming to encompass a vast body of material spanning the literature on cognitive behavioural therapy (CBT), neuropsychology of aging, and models of cognition and memory. This makes it quite complex, but a great deal of thought has been given to how it is structured to enable the reader to make their way through. The book is split into three main sections, the first introducing the bodies of knowledge and theory on which the subsequent arguments will be based, the second describing structures and techniques of assessment, formulation and intervention and how these can be applied across a range of conditions including dementia, and the third focusing on practical case examples and also outlining a structure for assessing therapeutic competency. In this last regard, the book sites itself quite firmly in current competency based educational practice and I think has clearly been written as the result of the author’s extensive experience of supervising psychology trainees. It is a very structured text, in many ways modelling the processes of agenda setting, information gathering, formulation and so on that are explored in the text. It is also quite academic in its format – the structure is progressive representing quite a lengthy thesis leading to the formulation of applied models of CBT. It would not be an easy book to dip in and out of since the final models are dependent on a clear understanding of the initial arguments and the use of abbreviations assumes that the text has been read in the order written.
It is quite a demanding read, although made easier by the clear writing style and use of diagrams and summaries. The pay back for making the effort is that the book has some very important points to make and makes them in a well-researched and evidenced way. I think one of the most useful is about the nature of normal cognitive aging and the risk of excluding older people from generic therapy services because of a failure to appreciate the interaction between cognition and therapeutic engagement. It seems unlikely that those commissioning services or commissioning staff training will take the time to read a book like this but it may well provide clinicians in those services with the arguments they need to ensure that consideration is given to the particular models of delivering therapy that are employed with older people. Ian James is not the only person to be writing about how to use CBT with older people and he makes frequent reference to the works of Laidlaw, Thompson, Gallagher-Thomson and Coon, but he has brought together models of cognition and models of CBT to make a direct analysis of the impact of the one upon the other. In fact, the bringing together of observations and models from different bodies of literature is a strength of this work. There is also utility in describing the lived experience of being cut adrift by memory failure so that all the information you have to go on is what you can access in the present within the framework of the cognitive process of problem-solving, a framing I particularly liked because of the emphasis on the idea that the behaviour of people with dementia is actually driven by considerable thought and information processing.
Another feature of the book that I liked was the very practical emphasis on the need to be effective – to measure what you’re doing, make a judgement about whether it is likely to help, and take steps to ensure that change occurs. I think this emphasis on the progression from engagement to understanding to changing and the need to achieve action beyond a shared understanding will be particularly useful to inexperienced therapists.
So … did I like it? I think there are weaknesses in this book. In the early chapters, I felt that the ground it tried to cover was too broad resulting in a rather sketchy treatment of some of the areas covered. This was particularly evident in the section describing working memory which referred to a model that has been considerably up-dated and added to since the one offered, disappointing given the strength of the book in relating psychological processes to cognitive ones. I also found that because it is a very technical book, it is not easy to warm to in the way one might expect from a book about therapy. There is an emotional distance from the actual experiences of the client, which is emphasised by the use of rather medicalised terminology and lack of consideration of the socio-cultural context of many people’s depression. My biggest concern, particularly in a book clearly destined for trainees, was that I was left with a lasting impression of rather old-fashioned patriarchy – throughout the book, there is unexplained but persistent use of ‘he’ for the therapist and ‘she’ for the service user and for all the author’s commendable effort in addressing a broad range of the literature, there isn’t even a passing nod to examining the power dynamics in therapeutic relationships.
There are reasons to recommend this book. It is a very learned and well-informed treatise with some important and quite novel things to say and it packs in a huge amount of information. Will it be a useful addition to the bookshelf? Certainly, especially if you want a pithy summary of the issues that are specific to therapy with older people or if you want to encourage people to think about dementia from a CBT framework. But if it were a trainee I was recommending it to, I’d give them a book on feminist psychology to read alongside it!
Reviewed by Kate Ross, B.A, M.Sc., Ph.D., D. Clin. Psy.
on behalf of Dementia UK West Midlands July 2010
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
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
Reviewed by Professor David Jolley
Dementia UK West Midlands
DEMENTIA from Advanced Disease To Bereavement
Edited by Victor Pace, Adrian Treloar and Sharon Scott
My initial impressions of this book were of surprise. I was expecting a hefty hardback book which would be dry and laborious to read, giving lots of facts coupled with medical data.
What I found was a little gem in the world of dementia care. It was a neat, portable relevant handbook. The chapters are well laid out covering all aspects of end of life care in dementia but with so much more, the introductions at the start of each chapter led into the clinical detail beautifully.
It was helpful having the symbols and abbreviations at the front; I took some time going through the list looking for abbreviations that I found unfamiliar. I must say there were plenty. I particularly liked the index before each new chapter; it gave a clear breakdown of what was covered within that section with page numbers for easy reference.
Chapter 6; Distress in dementia, was for me an interesting read. It gave clarity to indicators and features of distress using case examples to illustrate and support intervention. All aspects were covered including learning disabilities and, as with each chapter in the handbook, the opportunity for further reading was clearly indicated.
Chapter 16; Communication was a welcome and somewhat innovative chapter focusing not just on the person with a dementia, but also the families. This chapter provided guidance on consultation skills, conducting family meetings and promoting resilience within families as well as communication with younger family members which highlighted ‘in the distress that occurs when facing a major loss, children are often forgotten as adults struggle to cope'.
In summary I feel this is a most useful addition to any clinical setting providing care for dementia patient's but in particular the advanced and end of life stages. Its easy to read, accessible and well laid out chapters allow the user to ‘dip in and out' of relevant areas of practice. Topics covered provide a comprehensive and up to date point of reference with clear indicators to allow for further reading and or additional support in other chapters.
The wide-ranging appendix at the back of the book continues to support all the subjects as well as providing helpful information about relevant organisations. If I was to consider how to improve this handbook at later publishing it would be for a glossary of terms. Otherwise I know this will be a valuable addition to my clinical bookshelf.
Reviewed by Celia Stamper
Admiral Nurse, Kent
Art Therapy and Creative Coping Techniques for Older Adults
Susan I. Buchalter
I am not an Art Therapist and have not been trained in psychological therapies so this book is not aimed specifically at me. It is designed to be used by Art Therapists and other practitioners of psychological therapies working with older people with depression, anxiety, bipolar disorders and other personality disorders, older people who are still living independently rather than people living in residential homes. Some of the activities could be adapted to use when working with elders in the early stages of dementia.
This book is written through an American experience. It is a thorough, well researched comprehensive catalogue of ideas for arts activities designed to encourage the persons involved to talk about their thoughts and feelings in an overt way to understand their personal issues and find ways to cope with life.
Some chapters have artistic themes such as collage, creative expression, murals and reminiscence. Others focus on strengthening participants' emotional well being: building self awareness, self esteem and stress reduction. Each chapter's introduction contains useful descriptions about how the therapy or art form brings benefits to participants followed by a list of different creative exercises. The focus and expected outcome of each exercise is clearly defined but no suggested timings for activities are given. The activities are brought to life with descriptions of how people responded to the tasks and include photographic examples of artwork generated.
Many of the exercises use drawing paper, marker pens, or ‘markers', crayons, pastels, writing paper and pens. Others use materials to make collages. Some include using written language which may not be appropriate if you are working with people who do not have confidence in their writing skills. The exercises are for groups though some could be adapted to use with individuals.
Reading this book sparks thoughts about your own creative ideas for working with older people. If you are an artist, a carer or an activities facilitator looking for new ways to engage a group then this is a great resource to dip into for inspiration but I caution against people who are not trained in psychological therapies (if you are not a qualified Art Therapist, Music Therapist, Dance Therapist or a Psychologist) from closely following the exercises in their entirety.
Reviewed by Sharon Baker Sandwell Third Age Arts (STAA)
Sharon Baker is an artist based in the West Midlands. She manages the charity Sandwell Third Age Arts (STAA) which provides positive arts experiences for older people with mental health needs, people with dementia and their carers to enhance people's well being and enrich their quality of life.