The One-Stop Guide to Dementia

 

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’s defined as dementia only if these signs continue to get worse, with a permanent deterioration. If you know about dementia you will be better able to look after yourself or someone in your family who is affected by it. But there is not much useful information about.

The interest in dementia in the media has never been so great. This is 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. Once upon a time it was a shameful secret. But raising awareness without giving good advice is not enough.

It seems almost impossible to get sensible advice about dementia. We are faced with waves of publicity 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 in care home fees. Television adverts encourage us to be positive about dementia while at the same time celebrities 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.

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. Sometimes the professionals ignore or even hide the truth. For many people it is hard to know where to turn for sensible advice.

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 to. On the other you go downhill faster than you need to, for reasons that are often avoidable. Everyone would like to avoid unnecessary disability and expense, and to delay some of the difficult situations that might arise. 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 in effect 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. 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 experience or time. This book is for you.

Professor June Andrews FRCN

Dementia; The one-stop guide – practical advice for families, professionals and people living with dementia and Alzheimer’s Disease.

Out 5th February, 2015

Available to pre-order now from on-line bookshops

Professor June Andrews heads the Dementia Services Development Centre at Stirling University.