Dementia one-stop guide: An introduction

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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 signs 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. 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.

Representation of Dementia in the Media

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 encouraged to talk publicly about dementia and share their stories with other people. Often when I get into a taxi and the driver asks me what I do, I hear a personal story about how dementia has affected their family.

Once upon a time it was a shameful secret. 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.

Why practical Dementia advice is so important

Families affected by dementia live in fear of losing their entire life’s savings in care home fees. Television adverts encourage us to be positive about dementia while at the same time 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.

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.

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 people every year get the shocking news that someone in their family has dementia. For many of them their experience unfolds as if no one has 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 Allan House, a liaison psychiatrist, I wrote a book in plain language called ‘10 Helpful 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.

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 cope with the dementia journey the best way you can. Everyone has a unique experience, but in general there are two possible routes with dementia.

On one track you stay as well as possible for as long as possible, living life the way you want to. On the other you go downhill faster than you need to, for reasons that are often avoidable. Everyone would like to avoid unnecessary trouble and expense, and to delay some of the difficult situations that might arise.

On one track you stay as well as possible for as long as possible, living life the way you want to. On the other you go downhill faster than you need to, for reasons that are often avoidable.

Sensible, practical advice on how to do this is in short supply. People aren’t told about the remarkable services and equipment that are readily available or the simple changes to their lifestyle that can be so radical that they prevent the need to go into a care home. The One-Stop Guide to Dementia provides detailed information about what will make a difference in the lives of people with dementia and their carers. It is practical and compact, and builds on the ‘10 Helpful 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. However, when someone in your family gets dementia you may not have that sort of time.

This book is for you.

The One-Stop Guide to Dementia is available from all good book stores and online — look inside the One-Stop Guide to Dementia.