Why life doesn’t have to stop after dementia diagnosis

Marlene Aveyard who was diagnosed five years ago with early onset Alzheimer's at the age of 58.
Marlene Aveyard who was diagnosed five years ago with early onset Alzheimer's at the age of 58.
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When Marlene Aveyard was told at the age of 58 that she had early onset dementia she went back to her home in Keighley and said nothing. Each day she took the tablets prescribed by doctors to help stave off the symptoms, but six months on she still hadn’t told her family and friends the news.

“I was in denial, that’s the only word for it,” she says. “I first realised something was wrong when I developed a tremor in my hand. At the time I was working with victims of domestic violence and I put it down to stress. It never entered my head that it could be dementia and I think that’s why the diagnosis came as such a shock. My world fell apart. All I could see was the diagnosis, I couldn’t see a life in between.”

Fiercely independent, Marlene feared becoming reliant on others. Nor did she want to be pitied and somehow she hoped that if no one else knew her secret life might just continue as normal.

Things are different now. From a reluctance to even mention the word ‘dementia’, Marlene now works with the Alzheimer’s Society helping to debunk the myths and misconceptions surrounding the condition and has been instrumental in helping St Luke’s Hospital in Bradford transform its public spaces and open a new dementia wing.

“It was my GP who really turned things around,” says Marlene. “She immediately realised that I needed support. I was put in touch with the Alzheimer’s Society and they really gave me a focus and a belief that my life wasn’t over.

“It was a relief to tell people, but what it made me realise was how much ignorance there is about dementia. It’s the disease everyone is terrified of getting, but it affects people in so many different ways. I get by pretty well. A buzzer sounds when it’s time to take my pills and if I don’t hear it I can always rely on my dog Poppy to alert me. I have to be very organised and write everything down and it works, I’m doing ok.”

The project at St Luke’s has been particularly poignant. Marlene is the third generation of her family to have been diagnosed with dementia and the hospital was where her grandmother died of Alzheimer’s. “Since then, the care of dementia patients really has been transformed, but there is still a lot to do,” says Marlene. “Like a lot of people my first outpatient appointments were really daunting. It felt very clinical when the last place I wanted to be was in a hospital.”

The £513,000 scheme which was been funded by a Department of Health grant, has seen the hospital’s Horton Wing redesigned. Artworks have been hung on walls, new signage has been introduced alongside a dementia friendly help desk and two new gardens.

“It’s estimated that 25 per cent of people in hospital have some degree of dementia and the unfamiliar surroundings and bustle of a busy ward can be very disorientating,” says project manager Dani Woods. “As a result they often become distressed, anxious or agitated, but there is increasing evidence that the physical environment can have a major impact and we wanted to create spaces which feel both calm and joyful.”

The new facilities, which were developed over nine months, were due to be officially opened today ahead of Dementia Awareness Week which starts on Sunday.

“In the five years since my diagnosis, the support available to people in the same boat as me has improved dramatically,” adds Marlene. “I’ve found that keeping physically and mentally active has really helped me deal with the diagnosis, but I know that some people aren’t able to cope so well.

“The fact is this isn’t a disease we can ignore. It’s something which affects thousands of people and we have to learn how to deal with it.”