Northern Ireland

Dementia: Teacher diagnosed at 47 describes daily struggle

A dementia patient being comforted by a relative Image copyright Science Photo Library
Image caption Dementia is often viewed as an older person's condition but there are 40,000 younger people with dementia in the UK, according to Alzheimer's Society

It began when Liz Cunningham, a mother of two, and busy IT teacher suddenly could not find her way back from the toilet to her office.

"I began to get very disoriented. I had to ask someone how to get to my office, they thought I was joking," they said.

She was just 47-years-old when she was diagnosed with Posterior Cortical Atrophy, PCA, a former of Alzheimer's.

From writing substantial reports with ease, she found herself unable to make a sentence or spell words.

"Basically I was sitting at my computer just looking at the screen most of the day," she said.

"Having meetings was a nightmare as I couldn't remember anything about the students or how far they had progressed."

'Making no sense'

At work, the situation hit rock bottom when Liz had to stage a conference for local employers, government bodies, the directors, staff and students.

"I had to inform them about all the adaptive technology we had, what I had designed for some students, how they could work in a local work environment.

"Instead, the words did not come, I was making no sense at all. I could not understand what I was talking about and by looking at everyone's faces they looked embarrassed.

"As I packed up my stuff, tears began to fall and I could not get them to stop. I eventually managed to ring my husband to pick me up at the hotel. When he got there, I got into the back of the car and lay down, I couldn't stop crying."

She left work on sick leave and then retired.

Now, her everyday world is a struggle.

"I cannot go to the supermarket and look for a tin of beans, I have to check up and down each tin till I find the exact tin I want.

"It takes me hours to do shopping. It is difficult recognising objects, faces, judging speed or distance, using steps or stairs."

Major problems

Liz said she had already been prepared for palliative care.

In the meantime, she gets on with life - she has major problems with money and counting, so only uses a bank card.

Household tasks take forever.

Her visual problems leave her with difficulties trying to shower, using the correct shower gel instead of hair conditioner.

Dressing herself means getting help with putting on underwear or a shirt.

"The most difficult thing is having visual problems, the brain does not send the signals to my eyes," she said.

'Challenging the stigma'

Liz is a member of Dementia NI and has told her story in the hope of getting more people working together in action groups.

The aim is to challenge the stigma surrounding a diagnosis and raise awareness of dementia as well as provide training and education to the public and other organisations in how to live well with dementia.

John McErlean, co-chair of Dementia NI who is living with dementia, says: "We have a very important job to do in challenging the stigma.

"Whilst I have dementia, I can still do things for myself and make decisions; I just need society to allow me the time to do it in my way.

"I don't know how much time I have but I do know that we need to be challenging the stigma of dementia and that is what we plan to do through Dementia NI."

"I would love for there to be a cure, but there isn't. In order to give hope, individuals need to believe in hope," said Liz.

"What I can do is let them (others with the disease) know there is life after diagnosis, you have to struggle with each day and hope it is a good day."

Dementia NI is one of the groups taking part in Rare Disease Day on 29 February.

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