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'I was told I was going through the menopause - in fact, I had dementia at just 47-years-old'

Former IT teacher Liz Cunningham, from Belfast, became anxious when she realised that she couldn't remember how her students were doing, but it was three years before she got the final devastating diagnosis. Now, thanks to a new charity, she tells Stephanie Bell how she plans to help others.

Published 15/03/2016

Support role: Liz Cunningham, who was diagnosed with early onset dementia
Support role: Liz Cunningham, who was diagnosed with early onset dementia
Liz Cunningham with husband Philip
John McErlean, co-chair of Dementia NI
New purpose: Liz Cunningham with daughters Lisa (left) and Nicola and her husband Philip
Gritty drama: Julianne Moore in Still Alice, a film about a professor with Alzheimer’s

A determined move to empower people living with dementia in Northern Ireland is underway with the launch of a new charity,  Dementia NI.

Dementia NI was set up in Antrim last year and plans are already in progress to roll out what are being referred to as 'Dementia Empowerment Groups' in each health trust area across Northern Ireland.

As well as offering support to people living with the disease, Dementia NI intends to lobby the Government in a bid to influence policy, practice and service delivery for patients.

The first of these new groups is currently being set up in Belfast and today the charity appeals for people living with dementia to join up.

Programme manager for the new groups, Tara Collins, explains: "Dementia Empowerment Groups are being set up in each health trust area across Northern Ireland. At present, we are encouraging individuals with a diagnosis of any type of dementia, who reside within the Belfast Trust catchment area, to join their local action group and become involved in this important area.

"We are delighted with our progress to date and have received huge support from professionals and MLAs, including Chris Lyttle of the Alliance Party in east Belfast, who has attended our launch and is a keen advocate for dementia.

"The purpose of the action groups is to challenge the stigma surrounding a diagnosis, raise awareness of dementia, as well as provide training and education to the public and other organisations on how to live well with dementia."

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

Meanwhile, the formation of the Belfast group is being co-ordinated by Liz Cunningham (55), who has a rare form of dementia called Posterior Cortical Atrophy (PCA).

As she appealed for members to support the new group, Liz also opened her heart to share in her own words the emotive story of what it has been like for her to live with the disease.

A former IT teacher from Belfast, Liz was 47 when she was diagnosed with dementia. It was at work that her first symptoms developed, causing her extreme anxiety when she found she couldn't understand her texts or forgot details of students' progress. It took her three years to get a diagnosis and this is something she hopes working with the group will help to improve for others.

Liz is married to Philip (55) and they have two daughters, Lisa (34) and Nicola (30), and one grandson, Matthew, who is four.

Now, Liz says she has been given a new purpose through the charity and hopes to make a difference by campaigning for improved services as well as offering support to other people with dementia.

In what is a powerful insight into how this cruel disease impacts on an individual, she talks about the daily impact on the quality of her life and how she has learned to cope through hobbies and getting involved in the support group. She recalls: "I had to wait three years for all of my final results. I was made to feel I was mad and told I was going through the menopause.

"From the initial visit to the GP, I believe it should be easier for the doctor to provide assessments and strategies to start the initial assessment.

"Eventually, I was diagnosed by a psychiatrist who had been treating me. She had sent me for two previous scans which showed nothing. Then I had a Pet CT Scan which showed that I had Alzheimer's - I was 47."

Afterwards, Liz was passed over to the Dementia Elderly Services, where a consultant sent her for a 3D scan, which revealed that three parts of her brain were affected, including the back, left side and frontal left lobe.

"I was told I had Posterior Cortical Atrophy," she says.

"Alzheimer's is a brain disease that causes a slow decline in memory, thinking and reasoning skills. The most common symptoms are consistent with damage to the posterior cortex of the brain, which is responsible for processing visual information. It is progressive and terminal - the brain tissue shrinks which causes loss of cells.

"The difference between Alzheimer's and PCA is that language and memory deteriorates more slowly. I have been told I'm at level six to seven, so I have been prepared for palliative care.

"It affects my skills such as literacy with recalling the exact spelling of words or using a word in the right context. Other symptoms are my ability to follow text while reading, losing a word, sentence or rows of text and writing and typing.

"Numeracy, too, is affected, so mental arithmetic is out of the question. I have major problems with money so I try to only use my card. Making movements or gestures is awkward, and doing most household tasks takes forever to do and I still have days when disasters happen."

Liz says visual perception causes problems trying to shower or using the correct shower gel instead of conditioner.

She adds: "At times I can't dress myself without help, as I don't know how to put my bra or pants on or button a shirt.

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

"I was an IT teacher and I would have assessed people for adaptive technology. I began to get very disoriented going from my office to other offices or to the toilet. I remember one day I had to ask someone how to get to my office and they thought I was joking.

"I had to write substantial reports throughout the week and found I couldn't make a sentence or spell words correctly or find a word to use in the right context.

"I became emotionally distraught. I found it difficult to teach, as I could not follow instructions and forgot how to teach the software we were using.

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

In an experience that echoes a scene in the movie Still Alice, about a university professor who develops Alzheimer's, Liz found herself lost for words in front of delegates at a conference.

She explains: "Having meetings was a nightmare, as I couldn't remember anything about the students or how far they had progressed. Just before I left due to ill health, I had to hold a conference for local employers, government bodies, the directors, staff and students.

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

"But the words did not come, I was making no sense at all. I could not understand what I was talking about and when I looked 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 just lay down and couldn't stop crying."

Now, having left work, run of the mill tasks are challenging for Liz. "On an everyday basis, life is difficult. I cannot go to the supermarket and look for a tin of beans - I have to check up and down each tin until I find the exact tin I want. It takes me hours to do the shopping.

"It is hard recognising objects, faces, judging speed or distance, using steps or stairs. I have difficulty seeing clearly when I'm having double vision, or sometimes feel like my eyes are jerking around in their sockets. I have to use Low Vision Clinic black glasses, as I have major sensitivity to bright lights or shiny objects.

"My spatial awareness has also been affected, so I have trouble locating objects or where I am in a room or working out how far I'm away from the door or furniture. I never see the full picture - you can look at an area and see everything, while I will miss out quite a few items."

However, Liz has discovered she can master some precise work despite her limited sight.

"In my spare time I try to make jewellery using beads, polymer clay and resin," she says.

"When my brain enables me to do this, I use a large lighted magnifier to help me see the things.

"What has amazed me is that when you get used to doing these tasks, it is quite easy to do things with little sight and just using your hands. I also love painting landscapes and using different types of media to create different images, and I love knitting and crocheting.

"Working now to set up the group in Belfast is so fulfilling, it has made me feel like I have a purpose in my life again, just like I had when I was working. I may have a form of dementia, but I am clearly still intelligent enough to make decisions, support others and provide training.

"Initially when I was diagnosed, I wanted to find people who I could relate to so that together we could try and understand what was happening to our bodies.

"I have met one of the co-founders of Dementia NI, John McErlean, and was then introduced to the rest of the group.

"It was exactly what I wanted - to be able to talk and to help others come to terms with their diagnosis. Being part of the group has been a breath of fresh air."

And the new charity's service is already in demand, with lots of groups asking for support with dementia training and how to communicate with people who have the disease.

Liz says: "I think it is good that it's people with dementia who are going out to speak to others, not paid staff who really don't understand what is happening in our bodies.

"I love being part of a group that respects the person with dementia and enables them to have a life after diagnosis."

Dementia NI is currently looking for a meeting room to accommodate the Belfast group. Liz adds: "As with the other group in Antrim, we will pay attention to the most prominent details, which are memory, difficulty with other problems such as cognitive functioning, including language, attention, problem solving, spatial skills, judgment, planning, or organisation.

"We will also develop training and provide information for new members to help improve their confidence."

And the group wants to attend workshops held by other groups to build on the support it can offer.

"I would love it if there was a cure, but there isn't. In order to give hope, individuals need to believe there is hope. There is no greater power. What I want to achieve through the group is to let people know that there is life after diagnosis. You do have to struggle with each day - and you just hope it is a good day."

  • The first Dementia NI group meeting in Belfast led by Liz, will be held on Friday, April 8. For further details, you can ring the charity, tel: 07966 881 419 or email info@dementiani.org

Belfast Telegraph

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