Diagnosed with early onset dementia, Wendy Mitchell has become well known for speaking out about the condition. She tells Kate Liptrot about her determination to raise awareness

ALTHOUGH Wendy Mitchell didn’t set out to become a spokeswoman for people living with dementia, she has quickly become one. 

In the last few weeks alone the 59-year-old from York has made guest appearances on BBC Breakfast and Sky News and has spoken about dementia in the House of Lords. She is supporting the pioneering development of a facial recognition app to help people with Alzheimer’s and travels the British Isles making speeches to medical staff and researchers.

But the positivity with which she talks about research and living with dementia is not something she initially felt.

When she was diagnosed with early onset dementia by doctors in York last year, she spent three months feeling “totally abandoned” and bewildered as to where she could get support. 

“I used to have a brilliant memory , I was renowned for it,” Wendy said, “Suddenly words began to fail me and I would be at work in meetings and I would forget the most simple words and I would also see people I have known for years but I couldn’t remember who they were.

“The worst thing that happened to me one day was outside my own office at work and I just didn’t know where I was or who the voices belonged to around me, that was really scary.

“I had the perfect profile of someone who shouldn’t get dementia. I had low blood pressure, I used to run every other day, I have a brilliant diet, I don’t drink or smoke, yet here I am with dementia. It’s luck of the draw, it can affect everyone.”

Last year, the NHS worker of 20 years was told she had early onset Alzheimer’s Disease. 

“It was quite a relief to get a diagnosis because when you have weird symptoms you think all sorts of things are wrong so that put an end to the uncertainty of what it could be,” she said, “I had a diagnosis which was devastating but it enabled me to start planning and develop new ways to live well to compensate for the bits of my brain that were no longer functioning properly.”

But one of the toughest aspect of the diagnosis was that she was given no indication of where she could get support in York, Wendy said.

It was only when she came into contact with the Alzheimer’s Society and with the group York Minds and Voices, that Wendy said she began to feel concerned for others with dementia due to the long waiting lists for the memory clinic and the seeming lack of available support.. 

“What worries me in York is there’s 2,700 people with dementia and only half have a diagnosis. Where are all these people?” she asked, “The services can’t tell you and my fear is that lots of these people are isolated and don’t know groups like ours exist. If they did it may throw them a lifeline to show you can live well with dementia. Support is the key and peer support is even better.

“I used to be a really private person and it’s only because I was so shocked at the lack of awareness and the lack of understanding there was around dementia that I decided to speak out, I actually don’t like all the publicity. It’s not me. If it’s the only way to raise awareness then that’s what I’ll do.”

Now - partly as an aide-memoir - Wendy writes a blog about her daily experiences which is being followed by people in 70 countries around the world as diverse as America, Mexico, Iran and Kazakhstan. 

Wendy, who has been voted a top patient lead by the Health Service Journal, has alarms and calendars all around her house in order to “outmanoeuvre the disease”. 

As well as causing memory problems, Alzheimer’s causes sensory issues and Wendy said she can see things that aren’t there, recently seeing a stair gate. “If that stair gate is still here in half an hour I knowI’m going to take note of it. If not, it’s the dementia,” she jokes. 

One of the most difficult challenges was discussing the prognosis with her daughters Sarah, 34, and Gemma, 31.

“We sat down one Saturday afternoon and discussed the future and wrote the lasting power of attorney so they knew what I wanted in the future,” she said, “That’s helped enormously because one daughter would not have dreamed of doing something in it. They know what I would like - I don’t want my future to impact on their future.

“It took away the emotional decisions they have to make in the future, that’s why we did that. It takes away any horrible decisions.” 

She is outspoken in urging anyone with a dementia diagnosis in York to go for a coffee with the group at Minds and Voices and to get involved in research. 

“Anyone with dementia should be involved in research,” she said, “Not only will the developers get things right but it will contribute to your wellbeing and feeling of contributing to the future. 

“People think of a diagnosis of dementia as being the end stages, I talk about how we have got an awful long journey when you are diagnosed early and you still have your intellect and the ability to speak and answer questions. I say in everything involve us, without it, how do you know you are getting the services right?

“Suddenly people are realising we do have a voice and we are being asked more and more to speak out and be included.” 

• To read Wendy’s blog, visit www.whichmeamitoday.wordpress.com. If you would like to take part in dementia research visit https://www.joindementiaresearch.nihr.ac.uk. 
• Minds and Voices, the dementia engagement and empowerment group in York meets monthly, details can be obtained by ringing Emily Abbott on 07905 117108.