Dementia Is Not a Death Sentence

Great progress has been made on dementia, but that these misunderstandings still put people off addressing their fears shows that we have a long way to go. Now is the time for all of us to tackle dementia by confronting it head on - in Dementia Awareness Week, and beyond it.

Sitting on a bus the other day, I couldn't help but overhear two women discussing their friend, who had recently been diagnosed with Alzheimer's disease. They expressed concern that they wouldn't be able to talk to her anymore, that she'd no longer be able to join them for lunch or trips out. Their perception of Alzheimer's was that it was like a particularly virulent form of cancer - that it would rob them of their friend in a matter of months.

I wanted to turn around and tell them it doesn't need to be like this, and that with the right support it's possible for people to live well with dementia for some time and remain part of the community. I had to remind myself that I'd held the same views as these women once, before my father developed dementia and before I came to work at Alzheimer's Society.

I also had to remind myself that five to 10 years ago, these women probably wouldn't be having this conversation at all. The 'D' word wasn't uttered openly then - perceived as the ultimate death sentence, it was shrouded in a fearful, embarrassed silence. So, regardless of their misconceptions, the fact that they had at least broached the subject was a sign of progress.

Stigma is one of the problems facing those living with dementia. This contributes to the isolation so many feel, no longer seen as valuable and functioning members of society.

That's why during this year's Dementia Awareness Week, Alzheimer's Society has been tackling the many myths and misunderstandings about dementia. We want to show people that life doesn't end when dementia begins, support is out there and it is possible to live life well beyond a dementia diagnosis.

We have been calling on everyone to confront dementia head on - as only by doing this can we hope to defeat it. From someone who avoids engaging in conversation with a neighbour because they have dementia, to those who think they might be experiencing symptoms but haven't plucked up the courage to visit their GP, we all have a role to play. And Alzheimer's Society is here to help.

Through research with the general public, we discovered that there are still many harmful misconceptions that exist around dementia. Almost two-thirds of people (62%) we spoke to thought a dementia diagnosis would mean their life is over, while 49% worried people would say they were 'mad.' More than half believed they would struggle to have a conversation post-diagnosis, while 44% fear they either would or might lose their partner or friends.

There is no question that dementia can have a profound and devastating impact on people, but I've also witnessed many people who received a timely diagnosis carry on doing the things they love. I've spoken to people who continue to work, go on holiday and take up new hobbies post-diagnosis.

The sad fact is that these misconceptions seem to be driving people struggling with the symptoms of dementia to actually put off seeking a diagnosis in the first place. In a survey of over 1,000 GPs, more than half said their patients on average wait a year or more before coming to them with their concerns.

What's worrying is that a lack of timely diagnosis is denying many of these people the chance of getting the best possible information, support and treatment - evidence shows the earlier on you receive these, the better your chance of living well for longer. It also means that thousands of people are not able to plan for the future while they still have capacity to make important decisions.

Great progress has been made on dementia, but that these misunderstandings still put people off addressing their fears shows that we have a long way to go. Now is the time for all of us to tackle dementia by confronting it head on - in Dementia Awareness Week, and beyond it.

To mark Dementia Awareness Week 2016 (15-21 May) Alzheimer's Society is asking people to confront dementia head on. Find out more at alzheimers.org.uk/DAW or call the charity's helpline on 0300 222 1122.

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