This book is all about dementia, and what happens when someone is affected by it. The word “dementia” is used to describe the collection of warning signals that show up when your brain stops working as well as it used to.
It is defined as dementia only if these signs continue to get worse, with a permanent deterioration over time. If you know about dementia you will be better able to look after yourself or someone in your family who is affected by it. The interest in dementia in the media has never been so great. Films have been made about famous people who had dementia. “Iris” starring Dame Judi Dench tells the true story of the English novelist Iris Murdoch from her brilliant youth to her last days in a care home.
“The Iron Lady” is a moving film, which explores Margaret Thatcher’s life through fragments of history that represent her disintegrating thinking and recollection clouded by dementia (and some rather impressive hallucinations). Movies also explore ethical issues of caring. “Away From Her” and “The Savages” describe the caring dilemmas of a husband in one case and children in the other.
Although there is still stigma, this public airing means that people are more open about dementia and allow themselves to think about it more than they did in the past. This is all good. Public figures affected by dementia in their families are recruited as champions by dementia charities and actively work to tell other people that it is reasonable to talk about it and share your story with other people. Often when I get in a taxi and the driver asks me what I do, I get a personal story from them about how dementia has affected their family.
Although there is still stigma, this public airing means that people are more open about dementia and allow themselves to think about it more than they did in the past.
Once upon a time it was a shameful secret. It is still hard to get sensible advice about dementia Nevertheless, it is almost impossible to get sensible advice about dementia. We are faced with waves of publicity on the subject as newspapers print misleading headlines implying that there will be miracle cures available almost immediately.
Families affected by dementia live in fear of losing their entire life’s savings through care home fees. Television adverts encourage us to be positive about dementia at the same time as celebrities and thought leaders say that they’d rather have cancer, or that they believe they’d have a duty to kill themselves if they had dementia.
Investigative reporters make TV shows out of the misery of vulnerable people who have been on the receiving end of bad care. Scandalous nursing home stories ruin our confidence that there might be a nursing home anywhere in which residents even if they deteriorate have the benefit of comfort and good cheer. The often reported heartbreaking treatment of patients with dementia in hospital makes us afraid for ourselves and our older relatives.
In the middle of all this, thousands of families every year get the shocking news that someone’s got dementia. For many of them their experience unfolds as if no one ever travelled this path before. They are in uncharted territory, often surrounded by health and social care workers who don’t know a huge amount about the condition. For many people it is hard to know where to turn for sensible advice.
How do I know this?
In 2011, with Professor Alan House, a liaison psychiatrist, I wrote a book in plain language called “10 Hints for Carers” based on the existing research. Our printers’ proof copies kept being “borrowed” by doctors who did not return them. When it was published, families read it avidly.
Within two years over 30,000 copies had been sold, or exchanged for donations for the Dementia Services Development Trust the charity that supported us. Families said, “Why did no one ever tell us these things before?” Health and social care workers and volunteers took more and more copies, to give to patients, to families, and to fellow workers who had never been taught about dementia in their training.
Within two years over 30,000 copies had been sold, or exchanged for donations for the Dementia Services Development Trust, the charity that supported us. Families said, “Why did no one ever tell us these things before?”
At last there was some sensible and practical advice for anyone trying to make things better for people with dementia.
But it was not enough.
This book gives more information and advice about how to get through the dementia journey the best way you can. A detailed guide to what makes a difference Everyone has a unique experience, but in general there are two possible journeys with dementia. On one track you stay as well as possible for as long as possible, living life the way you want it. On the other you go downhill faster than you need to, for reasons that are often avoidable.
Everyone wants to avoid unnecessary trouble and expense, and to delay some of the difficult situations that might arise. Sensible, practical advice about this is in short supply. People aren’t told about the remarkable services and equipment that is easily available or the simple changes to their lifestyle that can be so radical that they prevent you going to a care home.
Dementia The One Stop Guide is a detailed guide to what makes a difference in the life of a person with dementia and their carer.
It is practical and compact, and builds on the 10 Hints. In setting out to write this I’ve drawn on information that is freely available, if you’ve got a clinical qualification that prepares you to understand it and a few months to research it. When someone in your family gets dementia you may not have that sort of time. This book is for you.
What is in the book?
An introduction to dementia…what is it really? Getting a diagnosis – what should happen? and what actually does happen for a lot of people How can friends help you? Can you keep dementia at bay? Hints for staying really well. Managing care at home….How to keep as well as possible for as long as possible with simple tips and hints on overcoming everyday problems What you should expect from the social care system, and from the NHS, and what to do if it seems to be going wrong
The dangers of a hospital admission…how to avoid the slippery slope
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