Dementia—
The One-Stop Guide
Practical Advice for families, professionals and people living with dementia and Alzheimer’s disease
Over 415 Five-Star Reviews on Amazon
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.
Being more open about dementia
and think about it more than we did in the past.
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.
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.
How do I know this?
In 2011, with Professor Allan 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 and now it is over 100,000, 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.
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
What readers are saying
“I have spent a week reading this book after being told after 5 years of wondering what was wrong with me. At some stage in various contributions from the NHS I heard the words mild cognitive impairment but did not realise what that meant. 10 days ago my doctor used the word dementia. I spent 2 days in a daze and then found this book and started reading it. I seem to be at the beginning of a long road, and this book has given me confidence that I can start this journey with hope and support from my friends and family. I know I shall keep this book by my bedside all the time. Now I know what I have to do. It won’t be easy but it will be positive.”
“Exactly what is needed. Sensible advice from someone who really knows what she is talking about - I wish I’d had this book when my father was stricken with dementia”
“This is a comprehensive read on key aspects of dementia care and how we can all support those who are caring for loved ones, while also reducing their own stress. An excellent guide.”
“A very well written and easily read book. It is written by someone who knows and understands Dementia. I have learned a lot from this book, things I should have been told. No household with a person with Dementia should be without it. It gives ALL the answers”
“An excellent explanation on just about every aspect of dealing with a Dementia ‘patient’.Confirmation that what I was experiencing as a carer and how I attempted to handle a for ever changing situation was reassuring that I was doing the right thing.Wish I had been aware of this book a couple of years ago,it might have prepared me for the road ahead.Foresight/hindsight is always wonderful.
Most certainly recommend it to ANYONE who is starting to be involved with a Dementia sufferer.”
