'I was diagnosed with Alzheimer's at 52'
- 15 September 2012
- From the section Health
Ann Johnson moved into a care home in Greater Manchester soon after she was diagnosed with dementia six years ago. Nothing unusual in that perhaps, except that Ann was then just 52 years old.
She has early-onset Alzheimer's, something which affects 5% of people with the disease, and she is passionate about talking about it.
A former nurse and lecturer at the University of Manchester, she is no stranger to the disease. She and her mother watched her father suffer with Alzheimer's over many years before he died.
As a result, she recognised the signs of the disease in her own symptoms.
"Alarm bells started ringing. I was getting lost for words, my short-term memory was bad and I kept getting lost when I went out. I was finding it difficult at work too, I would get stuck for words in class."
Ann, now aged 58, retired from lecturing soon after her diagnosis.
Nowadays, simple things like counting money, telling the time and going to the shops are a challenge - but Ann refuses to let it get the better of her.
"I never hold back, I'm very open about it. If I'm buying a train ticket I say 'Say things slowly please, so I can understand'.
"The trouble is you can't see my problems. It's not like having a broken leg. You would have no idea, so it's difficult for people to understand."
Ann is passionate about telling people what it is like to live with dementia. Since her diagnosis she has travelled around the country giving talks and speeches to health professionals and dementia patients alike.
She helped to launch the Department of Health's dementia awareness campaign and has spoken at international conferences in London and Dublin, meeting the prime minister and many celebrities along the way.
Such is her commitment to the cause that Ann was recently awarded an honorary doctorate from the University of Bolton for her tireless campaigning for dementia sufferers, which she was very proud to receive.
"It means dementia is recognised. It's important for people to know what it is, that everybody with it is different. I try to get people to understand it so they aren't scared of it - so they love us for who we are."
Scientists are trying to find out why more than 20,000 people in the UK get Alzheimer's before they are 65. Some genes are thought to increase the risk of the disease taking hold, but more research is needed to explain why.
Nick Fox, professor of neurology at the dementia research centre at University College London, says research into early-onset Alzheimer's is very important because understanding why people get the disease 20 or 30 years earlier than most people with Alzheimer's may provide clues to the causes and the treatment of the disease.
In addition, people get more unusual variants of the disease when sufferers are younger.
"It's not just memory, but also visual perceptual functions that are affected in these cases. They find spatial awareness difficult so they might keep clipping the wing mirror in their car, for example, although there's nothing wrong with their eyes."
In fact it's the back of the brain which is affected, whereas the area critical to memory is the hippocampus, located in the middle of the brain.
What experts do know is that proteins start accumulating in these bits of the brain, causing the nerves to function less well and die.
When it occurs at a relatively young age, Alzheimer's is a particularly cruel affliction because it attacks people who are otherwise healthy, in employment and may have young children.
"Alzheimer's disease is a dreadful burden at any time of life but people who present in their 50s and 60s have additional problems," says Prof Fox.
"They can get into trouble at work if it's not recognised. They may get into financial difficulties and they're often looking forward to their retirement at that point."
A diagnosis is difficult to make too. People with early-onset Alzheimer's tend to be told they are depressed or stressed. When they are finally diagnosed, following delays and uncertainties, it may even be a relief for the patient and his or her family.
Although Ann is taking drugs to keep the disease from progressing, she knows she can't turn back the clock.
"I don't think about the future. It's terrifying. I watched my father lose all his abilities. So I live from day to day. I make a list and get things done."
Yet Ann is very comfortable with where she is and who she is. When she travels to give talks on dementia she is always accompanied by a friend. She is also lucky to be surrounded by caring people, loving friends and a secure place to live - which she says makes all the difference.