When Someone You Know has Dementia

From the Introduction

This book is 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. Movies 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 that explores the former English prime minister Margaret Thatcher’s life through fragments of history that represent her disintegrating thinking and her recol¬lection clouded by dementia (plus some rather impressive hallucinations). Movies also explore ethical issues. Away from Her, Still Alice, and The Savages describe the dilemmas and family dynamics of caring. 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 to share their stories with other people. Often when I get into a cab 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. Families affected by dementia live in fear of losing their entire life’s savings to care home fees. Television commercials 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. Scandalous nursing-home stories ruin our confidence that there might be a place 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, the experience unfolds as if no one has ever traveled this path before. They are in uncharted territory, often surrounded by professionals, family, and friends who don’t know a huge amount about the condition. For many people it is hard to know where to turn for sensible advice.