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Viewpoint: Carey Mulligan's campaign to change how we view dementia

Carey Mulligan and her grandmother "Nans" Image copyright PA
Image caption Carey Mulligan and her beloved grandmother, 'Nans'

Oscar-nominated actress Carey Mulligan has witnessed the effects of dementia on a close family member. While there is no cure for the illness, here she explains how a better understanding will help remove the stigma that still surrounds it.

The Christmas period is undoubtedly a time many of us look forward to spending with family and friends and that's no different for me. My beloved grandmother "Nans" turned 91 a couple of days before Christmas and my family and many of Nans' friends - laden with copious amounts of cake - went down to Wales to see her and celebrate.

Nans and I have always been extremely close and she is the single most influential person in my life aside from my parents. But a lot has changed in our relationship in the last 12 years. Nans was diagnosed with dementia in 2004 and from that moment our lives changed significantly.

But on days like Friday, when we all come together and celebrate her life with those who love her the most, there are still moments of the purest magic.

Dementia is an urgent health crisis that we can no longer ignore. Some 850,000 people in the UK have the condition and more than 47 million people globally live with it.

Its growing prevalence has improved how we, as a society, view dementia. But there is still a long way to go and the stigma of dementia remains rife.

Too many common myths and misconceptions about dementia still exist. Time and again I hear reference to it as just being a natural part of ageing. And, unfortunately, it is often the butt of distasteful jokes.

But dementia is a disease of the brain and it requires understanding, care and support.

The first step in changing people's understanding of dementia and improving the lives of those who have the condition involves educating people not just on our doorstep, but across the world.

Schemes that set out to change perceptions are doing fantastic work already. The Alzheimer's Society's Dementia Friends is a good example. It has 1.7 million people signed up to take action and change the way people think, act and talk about dementia. Through information sessions participants are asked to think about what living with dementia might be like, practically and emotionally, and are encouraged to make changes within their community to make life a bit easier for people living with dementia.

Image copyright PA
Image caption Carey Mulligan cuts the ribbon at the start of the Alzheimer's Society's Memory Walk in Swansea, Wales

As a global ambassador for the schemes, my aim is to raise awareness and help change global attitudes towards dementia. I recently delivered a Dementia Friends information session to an audience of 50 young people in Los Angeles.

In spite of a few misconceptions about dementia they were really interested to try to understand the disease in a real way. Many of them used words like "crazy", "loony" etc when I first asked them what words came to mind when we thought about dementia. But by the end of the session there was a room of young people inspired to do more for those in their communities living with dementia. A young person growing up with an understanding of the illness is one of the most crucial elements of changing how it is viewed and building a dementia-friendly generation.

Like the hundreds of thousands of people living with dementia and their loved ones, I have seen first-hand the challenges the illness brings. I understand what a vital role society - individuals and entire communities - has in supporting people with dementia so they can feel included and stay connected. Small, easy changes we can make within our community can make such a huge difference. When the police, staff in supermarkets and doctors surgeries and train stations all have an awareness of how dementia can affect an individual they are much better equipped to be helpful when help is needed. Because life doesn't have to end with a dementia diagnosis.

What is dementia?

Dementia is a common condition. Your risk of developing dementia increases as you get older, and the condition usually occurs in people over the age of 65.

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of the brain and its abilities. This includes problems with: memory loss, thinking speed, mental agility, language, understanding and judgement

Find out more: NHS

However, getting the diagnosis itself is not straightforward. A new survey of GPs has suggested that almost half of them don't believe that it is always in the best interests of patients with dementia to receive a diagnosis because services available to them are so poor.

I can't advocate enough how important a timely diagnosis of dementia can be. It enables someone living with the illness to understand their condition and to explore the ways in which they can be supported and receive the best possible care.

My family is very lucky that, together with Nans, we were able to find a brilliant care home. My grandmother has lived there since 2006 and it is truly her home. The staff all go above and beyond to treat each person as the individuals they are. The home requests a biography of each person, so that even if they can no longer communicate verbally they get a real sense of who each individual is.

In addition to the fantastic staff at her care home, Nans has a wonderful support network around her of loving family and friends who visit her regularly. Every visit has moments of real joy. She may not remember them but there is no doubt in my mind that she feels every ounce of the overwhelming love and respect we all have for her. That her oldest friends still take the time to visit her, even if just to sit with her in quiet reflection, means so much to her and all of us.

Find out more

Carey Mulligan will be guest editing Radio 4's Today Programme on Tuesday 27 December. You can listen to her interview with Michael Parkinson and Michael Palin on that day, or catch up afterwards on the BBC iPlayer.

These were sentiments echoed by Michael Palin when I spoke to him for the Today programme. He spoke about his close friendship with fellow Python Terry Jones, who has the condition, while Michael Parkinson spoke about his own experience of dementia with his mother, Freda. Our discussion brought home to me even more how dementia is individual to each person and how it affects everyone who lives with it so differently.

Michael Palin talked about how Terry has lost much of his ability to speak, but takes great joy in watching old musicals on the television. He also shared tales of their frequent trips to the pub together, where Terry will sit in contented silence for most of the meal but when it becomes time to choose the wine will launch into fluent Portuguese to order a bottle.

Sir Michael Parkinson remembered how even 30 years after his father's death his mother would imagine her husband was down the pub and call up the landlord to send him home. He said how even though she couldn't remember who her son was, she knew every single lyric of Frank Sinatra's songs.

Both Michaels also discussed how crucial it is for family and friends to keep visiting and spending time with their loved ones living with dementia after diagnosis. They felt this is essential to help them feel connected and included, even though it might be challenging at times for the person visiting.

It's so important that everyone living with the condition is treated with the respect and dignity that they deserve. At the moment, there's not nearly enough awareness about what dementia is and as a society we all have a duty to change that.

Carey Mulligan is Alzheimer's Society's Global Dementia Friends Ambassador.

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