Two women determined to challenge the stigma surrounding dementia have shared their personal journeys living with the condition on ITV's This Morning. Julie Hayden and Gail Gregory, who call themselves 'dementia rebels,' appeared on the programme to mark Alzheimer's Society's Forget Me Not month.
Diagnosis at 54: 'I Was Given Six to Seven Years to Live'
Gail Gregory, from Lancashire, disclosed she received her dementia diagnosis in 2019 at the age of 54. She was told at the time she had only six to seven years to live. Speaking to hosts Ben Shephard and Cat Deeley, Gail recalled the early signs of her condition. 'I was running my own business, and we'd noticed changes with my personality,' she explained. 'I had an embroidery business like teddy bears and clothing, and we put personalised messages on, and I was taking a lot of information in which I wasn't retaining. So when people were placing orders, I was having trouble retaining information, so I was making mistakes, which we put down to stress at the beginning because we had just moved.'
'As you do, you put things off, and you think it's going to get better, but it doesn't get better, it goes worse, and so other things start to creep in,' she added.
The Reality of Diagnosis: 'You Realise There's Something Wrong'
Gail eventually consulted a medical professional and described the assessments she underwent, such as drawing a clock face, 'getting the numbers muddled up,' and attempting to recall an address. Reflecting on that moment, she said: 'You realise there's something wrong. It's then that it's reality, that there's something wrong. But what, you don't know. Nobody tells you it's going to be dementia, and you don't imagine it's going to be dementia, especially not at the age of 54.'
'This is where the perception is wrong. Everybody expects it to be an older person in their later years, what they don't expect is that people younger than me have been diagnosed, there are even children diagnosed. It's that perception we need to change, because it's not the end of life, it's the beginning of a new one.'
Julie's Journey: Symptoms Dismissed for Over Five Years
Julie Hayden also shared her experience, revealing she had been suffering from 'life-changing' symptoms for more than five years before being diagnosed. She was initially told she was depressed and going through menopause, and it took her over five years to receive a proper diagnosis. Julie and Gail are now both supporting other people with dementia, particularly younger people, and fighting back against the stigma of living with the condition.
Julie urged for more training and information to support doctors: 'I can't tell you what it's like to live with cancer and go through the treatments because I've never been there. Nobody can tell you what it's like to live with dementia unless they've actually lived with it.' She added, 'I had huge surprises as to what it was like, compared to how I thought it was going to be like when I got my own.'
Living with Purpose: 'A Diagnosis Should Never Change Our Worth'
Sharing her gratitude for the support they've received, Gail read a statement: 'A diagnosis of dementia, it can change many things but it should never, ever change our worth. We don't need pity, and we don't need to be pushed aside, because we need understanding and support and the opportunity to continue to live our lives with purpose, dignity, and connection.'
She added: 'When I got my diagnosis, they said to me I would have six to seven years to live. I'm in those years now, and I'm still going, and what people should be saying to us is, go outside and live your life. Do the things that you want to do because that's what life's about at the end of the day, it's about living.'
Gail continued: 'I'm very grateful for dementia, because dementia has made me calm down. It's made me appreciate the things that we have, like nature and things like that; it's been wonderful. We get so many opportunities that we wouldn't even dream of having, like coming here today, it's wonderful.'
This Morning airs weekdays from 10am on ITV1 and ITVX. For more information, visit the Alzheimer's Society website.
