'We need to get rid of the stigma of dementia’

'We need to get rid of the stigma of dementia’

The unmade bed in her bright, private room in a Cheshire nursing home makes Ann Johnson, pictured above, cross. At her request we’re meeting early in the morning, when she’s mentally and physically at her best. But even then she knows she can’t possibly make the bed herself to save the cleaner a job. “It’s only a duvet for goodness sake! And me a trained nurse...” she tuts, frustrated by her own ineptitude after years spent expertly folding sheets and blankets into immaculate hospital corners on her own patients’ beds.

To me, and doubtless to anyone else who’s never got so close before to anyone affected by Alzheimer’s, it’s baffling how such a simple task can be so difficult to someone who otherwise appears so on the ball. This same cheerful 61-year-old woman had greeted me by my Christian name as effortlessly as she later did to Patrick, the Yours photographer (whose name I’d momentarily forgotten despite working with him many times before). She’d given me an informative, guided tour of the Sunrise Senior Living home in Hale Barns, introduced me to staff, chatted about the weather and told me she was trying to learn Spanish with an audio CD. “Weird isn’t it?” she says, sensing my bemusement as she tries to explain what it’s really like to be one of the 496,000 people in the UK today affected by the most common cause of dementia.

Despite Ann’s very normal, if slim, appearance and demeanour, she’s just revealed that she also struggled to wash and dress herself this morning and can only tell the time with a digital alarm clock. Despite being someone who’s watched the pennies all her life, she can no longer count money, read, write, knit or even eat easily. However, she has learnt to email, albeit slowly. “Things I used to take for granted I now struggle with. I will never get back what I’ve lost. But I don’t ask for help. I want to be as able as I can for as long as I can,” she says.

As we sit down to chat in a small dining room, she points to a soup spoon laid out on the table and adds: “I can tell you what that’s used for but I cannot for the life of me tell you its name.”

It was words – or rather the loss of them – that first alerted Ann to her condition. After starting her training as a state-registered nurse in 1970 and becoming a ward sister, she later switched to nurse training and lecturing. “My biggest problem in class was that I was getting stuck for words and it wasn’t like me. I used to remember everything and be so exact and precise. “Suddenly I was searching for a word and it wouldn’t come. My father had been diagnosed with Alzheimer’s at 57 so I suspected what was wrong, but
I put off going to my GP for a year. Eventually I had to accept things were not right and make an appointment.”

Ten months later, aged 52,  on a date she has no trouble remembering – October 12, 2005 – she was diagnosed with early onset Alzheimer’s and immediately started taking medication. Divorced without children, Ann lived alone and took early retirement. Soon she started getting lost and was unable to find her way home in the area where she’d lived for 40-plus years. “It was frightening,” she admits.

As her short-term memory continued to deteriorate and it was evident she wasn’t safe, she moved in with her mother, who was in her 80s. But when Ann became impatient and started speaking unkindly to her mum,  and swearing for the first time in her life, she used her pension and savings to move into Sunrise, where she’s supervised 24 hours a day.

With her long-term memory now fading and medication increasingly ineffective, she says life is increasingly becoming more challenging. “I have good days and bad days. You’ve got to laugh about things; if you don’t you’d cry. I used to be a worrier all my life and I now know worry doesn’t change anything.
“I’m lucky that care has moved on since my father’s day and that I am surrounded by brilliant staff here who are
my friends.”

Three things keep  Ann going. Her friends who are “vital”, her strong Anglican faith and her work in recent years as an ambassador for the Alzheimer’s Society. This has led her to work with David Cameron and earned her an MBE and an Honorary Doctorate from the University of Bolton for her outstanding contribution to healthcare.
With the help of her friend and travel companion Christine, she tours the country giving talks about Alzheimer’s and how people who are affected by it can be helped. She adds: “It gives me a purpose for living and makes
me feel valued and useful. As daft as it sounds it’s given me a new life! I want to get rid of the stigma of dementia and tell people not to be afraid.
If you’re worried about yourself, go and see a doctor. To all others, I say love us for who we are!”
Find out more from the Alzheimer’s Society at alzheimers.org.uk/daw2014