DEATH SENTENCE
who was named after dementia. She smiles a lot and chats animatedly about the group they have helped set up near their home in Eccles, Greater Manchester, to raise awareness of dementia and help others with the same condition. She credits this with giving her a new lease of life. “I came to my senses and thought, I could stay on the sofa and continue to feel depressed or I could fi nd a different way of dealing with it,” she says. “It didn’t take away my grief – all of our dreams, our retirement, everything I wanted to do had gone – but it gave me a focus.”
AFTER reading about the Alzheimer’s Society’s Dementia Friends campaign on the internet, she decided to get involved.
The initiative, launched three years ago, aims to increase public understanding of the condition and suggest ways in which people can make life easier and more pleasant for those with dementia.
This has been one aspect of living with Alzheimer’s that Joy has found diffi cult to cope with. “I had so many bad experiences in the shops, basic things such as impatience,” she says. “If I bumped into someone I would apologise but they would tut and tell me to get out of the way.”
Joy now holds Dementia Friends talks and has even set up her own group which organises excursions. “We go ten- pin bowling, ride zip wires and even go away for the weekend to the countryside. I’ve helped create the support network I so desperately needed.”
Throughout our conversation she loses her train of thought. “I do this a lot now, lose track of where I am and have to fi nd it again but people trying to fi nd the word for me is something I hate,” she says.
“Most of the time I will get there on my own and if I don’t I’m not bothered. It isn’t that vital for me to have to fi nd the word.”
But although Joy’s symptoms are worsening, the couple are resolutely positive about the future – and teamwork means they can still live a relatively normal life.
“I used to fi nd milk in the washing machine and mugs in the fridge so we labelled all the cupboards which has helped,” explains Tony, who is a retired businessman. “I do all the cooking but she makes her own drinks sometimes and knows where things go.”
Two years ago Joy won a Dementia Friends Champion award for her work. She is emotional when discussing the ceremony which took place in London. “Winning the award was just amazing. It helped me to regain some of the self- worth I’d lost,” she says.
“It helped me to feel valued again. Having dementia doesn’t mean I have to sit indoors knitting booties.
“People tend to write you off when you are diagnosed but that’s because they just aren’t educated about it. It’s improving, but there is still a long way to go.”
Joy is philosophical about the future. She says: “It worries me but it just wouldn’t do if I got up every morning and thought, ‘ What if I won’t be able to communicate? What if I’m in pain and nobody knows?’ I’m frightened but it doesn’t do to dwell on it.”
And Joy has vowed instead to live life to the full. “You can live well with dementia – and I don’t think that just applies to younger people,” she says.
“I am living proof that dementia is not a death sentence.”
The Daily Express is supporting Alzheimer’s Society’s Dementia Friends initiative. You can become a Dementia Friend at dementia friends. org. uk or call 0300 222 5855.