The 25 titles on the booklist, available in libraries across England from February, have been recommended by health experts and people with lived experience of dementia. The books can be recommended by health professionals or people can self-refer and borrow titles for free from their local library. The titles on the booklist are divided into four categories: information and advice; living well with dementia; support for relatives and carers; and personal stories.
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Description How does it feel when someone you love develops dementia? Reviews ' Given present estimates that there are , individuals in the UK experiencing some form of dementing illness, books such as this serve a valuable purpose. These are supplemented by a very useful contextualising introduction by the editor, and some recommended reading and a list of helpful organisations at the end.
These moving and personal stories, which are a mixture of the voices of the carers themselves and a transcription of a discussion with the editor, evidence the complexity, pain and variety of both "having dementia" and dementia caring experiences. The fact that some of the tales are accompanied by photographs, that one contribution is in the form of a poem and that the tales are from carers from a variety of backgrounds strengthens the book's capacity to provide a genuine cornucopia of human experience "warts and all" One the most powerful dimensions of the book is its multiple perspectives and inspiring portrays of astonishing levels of stoicism, devotion, resilience and love displayed by "ordinary" people for their relatives and friends with a chronic, disabling and distressing condition The book unashamedly adopts the subjective experience of dementia caring as its standpoint and offers a rich source of raw evidence about what it is like to care for someone you love with dementia in the real world, right now.
People with Dementia Speak Out
Telling Tales about Dementia will be a great encouragement to other carers. They will feel in the company of those who do understand the agony and the poignancy from the inside. It also has so much to contribute to the understanding and training of professional carers.
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- Information and advice.
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It is devoutly to be hoped that, as the government's national dementia strategy is implemented, it will address some of the vital concerns so vividly depicted in this book. With dementia rising up the healthcare agenda and the government's dementia strategy acknowledging the scale of future needs, it is important to listen to the voice of people living with dementia in service planning.
Living well with dementia
Every one can and should be used to teach us as individuals and in reflective groups - be we informal family carers or professionals This is a wonderful book which we must be thankful for and make good use of. 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.
How do you cope alone with your loved one's slow loss of rational thought and behaviour? You cannot - and you need not. The single most valuable achievement of this book is to tell carers they are not alone. The more of us there are, the stronger we become, and the better we can fight for our loved ones in the face of this cruel disease.
Reading these stories will make us all, in the words of one of the contributors, "determined to make a difference". Echoes of indifference in the face of family devotion and upset stand in distressingly sharp contrast.
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I was left in no doubt that all health and social care practitioners, including those working in care homes who read these tales will be unable to stop themselves looking at what they do and asking can we not do better? I hope they will also be read by those who have had no previous contact with dementia, to help combat the stigma it still carries through lack of public awareness The accounts are moving, engrossing, sprinkled with quirky humour, and truthful.
There is both warm praise and angry criticism of services. I hope the book will play its part alongside the National Dementia Strategy to help eradicate some of the glaring bad practice it highlights 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.
It's both powerful and moving.
People with Dementia Speak Out | Lucy Whitman | | NetGalley
However, the narratives across the chapters also provide strong lessons and experiences that both increase understanding and highlight key issues for a much wider audience - particularly for formal carers, service developers, policy makers, commissioners and anyone with an interest in improving the experience of living with dementia for both the person and their close friends and family. Central to this is the importance of relationships in all their complexity and form: the book illustrates this fundamental importance beautifully.
Any affected by dementia in either a professional or personal realm will find this collection eye-opening, engaging, and educational. 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 Carers of people with dementia are the main audience for this book, and they will find much to identify with and much to support them It is equally important that professionals read this kind of book, and not just those with a specialist knowledge of dementia, as one of the key messages is a failure to recognise and understand dementia.
Taken together these short stories are probably more effective than a shelf full of dementia strategies and books about person-centred care.