Dementia Care: How Celebrities Are Putting Dementia in the Spotlight
“I felt insulted upon being diagnosed with a form of Alzheimer’s. I decided to do my best to marshal any forces that I could against this wretched disease” - Sir Terry Pratchett, 2007.
Terry Pratchett is one of the highest profile people to-date to publically announce a dementia diagnosis and use both their platform and condition to effect change in public perception and awareness.
Upon discovering that he had a rare form of Alzheimer’s, posterior cortical atrophy (PCA), the author of 41 books became a fierce advocate for dementia awareness – something that continued until his death eight years later.
His warmth and courage in talking about, and living with Alzheimer’s, inspired many people - not just those with dementia, and arguably brought it to an audience that had possibly not considered it in any depth before.
For Pratchett, it wasn’t enough to just live with the condition, he wanted to talk about it – and to say some candid things about his experience to the world.
In a moving account published by the Alzheimer’s Society in 2008, he concluded:
“It is a strange life when you ‘come out’. People get embarrassed, lower their voices and get lost for words.
Journalists, on the other hand – I appreciate that other people living with the disease don’t get so much of this – find it hard to talk to me about anything else, and it dominates every interview.
It’s strange that a disease that attracts so much attention, awe, fear and superstition is so underfunded in treatment and research.”
He continued to write throughout, including a documentary Back in Black which is due to be shown on BBC2 this year, along with another best-selling book, and equally eloquent articles, blogs and speeches about dementia.
Terry noted, in a blog post for Alzheimer’s Research:
“There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways.
I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy which, for some unknown reason, still leaves me able to write bestselling novels, with the help of my computer and friend.
There’s no clearly plotted pathway to the course of these diseases. Dementia attacks those facets which make us who we are, and it’s a deeply personal attack that defies prediction. And that’s the point. Every person with dementia has a unique story to tell.”
Such high-profile, honest discussions of dementia, are a contrast to it being hidden away from the public eye, as it was for many years.
Despite stars such as Charlton Heston, Rita Hayworth and Charles Bronson all living with dementia, the condition was little reported and certainly not in the context of celebrity stardust until fairly recently.
Bringing Alzheimer’s and dementia out into view and inspiring frank and open discussions around them has never been more important as it is now.
With 850,000 people living with dementia in the UK and set to increase to over 1m by 2025, the voice of celebrities is a vital way to help raise the issue more widely.
Why is it important?
Despite the increase in coverage and discussion about dementia in the mainstream media, recent research by the Alzheimer’s Society and Ipsos MORI revealed that a great deal of fear exists around the condition.
Just under half of British adults aged 16-75 years old who were questioned for the poll, said that dementia was the health issue that they most feared developing.
The research also revealed a significant lack of public understanding with only a fifth of British adults believing that dementia is a condition that results in death and only 72% believing that dementia cannot currently be cured.
Because public understanding is so poor, people with dementia tell Alzheimer’s Society that they often feel, and are, misunderstood, marginalised and isolated.
Celebrity recognition can play a vital part in creating awareness, and the personal stories told in the media can bring issues – such as the stigma, invisibility and ethics of dementia – into mainstream debate.
Comedian David Baddiel’s father, Colin, was diagnosed with Pick’s disease, frontal lobe brain atrophy, which causes symptoms such as swearing, sexual disinhibition and rudeness, and he has spoken out about the experiences of his father and their family.
He also made a documentary, The Trouble with Dad for Channel 4, in which cameras followed his father for a year to show the reality of living with his condition, which raised some ethical concerns around consent.
For Baddiel, the power of raising awareness was a major part of his decision to film his father, telling the Radio Times when the documentary aired:
“There is no situation where it is straightforwardly OK to put someone on camera who is not totally informed about it due to dementia, as is the case here.
“I’m perfectly happy if people want to say ‘That is not ok’, because maybe it isn’t. But the alternative is that nobody ever talks about this, and we must. It’s an epidemic – the largest killer of older people, bigger than cancer. We must bring that into the light.”
Being in the public eye with dementia isn’t just about highlighting the issues – it can provide inspiration too.
Actress, Prunella Scales, 84, has lived with Alzheimer’s for 15 years, yet continues to work.
Her most recent project featured exploring the Keralan backwaters with her husband Timothy West, for the Channel 4 programme Great Canal Journeys.
In an interview with charity AgeUK, she said:
“I’m grateful that nowadays things are diagnosed and named, and you are taught how to deal with them. I’m a reasonably intelligent person, and one makes adjustments. We are coping with it.”
In robust form, she also insisted, when asked about work, that dementia wouldn’t get in the way:
“Yes [I can still work], but I have to start learning my lines a lot earlier. But it is not uncommon at the age of 82 to have memory problems.”
And the positive power of seeing someone living with dementia on television isn’t limited to a personal experience. Emmerdale’s long-running storyline around vicar Ashley Thomas’ early onset dementia gained praise from charities for its scope and sensitivity.
The storyline ended in April of this year, and was the first time a British soap had featured early onset dementia – the soap even aired a ground-breaking episode in December, shot from Ashley’s perspective to show what it might be like to live with dementia.
Some 6.4 million people viewed the special episode, demonstrating the reach and impact a show like this can have.
The show picked up this year’s TV Bafta award for ‘Best Soap’, and actor John Middleton, who plays Ashley, noted in his acceptance speech how strangers still thank him every day for his portrayal of the degenerative condition:
“It’s extraordinary how not a day goes by that I don’t get stopped in the street by somebody saying ‘thank you very much for doing this story’, as it has affected them because of a relative who has had the disease.”
Kathryn Smith, the Alzheimer’s Society’s director of operations, also highlighted that many members of the public had contacted the charity after seeing Ashley’s storyline.
Stars United Against Dementia
Alzheimer’s Society patrons already include celebrities such as Dame Judi Dench, whose role as Iris Murdoch in the film ‘Iris’ (2001) portrayed the writer’s journey into dementia, and actress Britt Ekland as her mother’s carer when she was living with dementia.
This year, the charity has taken star power a step further with its United Against Dementia campaign
The aim of the campaign is to inspire people to come together and unite against dementia, with a raft of celebrity supporters including Jo Brand, Richard and Judy and Carey Mulligan.
Footballer Robbie Savage, another of the campaign’s supporters, lost his dad, Colin, to young onset dementia. For him, facing dementia head-on in society and raising its profile is crucial to getting rid of the stigma and lack of understanding around it:
“It was so painful to witness my hero and best friend gradually slip away. In the end, he couldn’t speak, swallow or recognise me at all. To see him like that was devastating for the whole family. That’s why it’s so important for me to get involved with this campaign.
“People think dementia is an older person’s condition, but it isn’t. My dad was struck down in his prime. Dementia can affect anyone anywhere.”
To find out more about the United Against Dementia Campaign, visit the Alzheimer’s Society website at alzheimers.org.uk
by Anna, Features Editor
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