Julie Hayden and Gail Gregory, the self-proclaimed ‘dementia rebels’, appeared on This Morning to share their experiences of living with dementia and challenge misconceptions about the condition
The inspirational women are raising awareness of living with dementia (Image: ITV)
Two women determined to challenge the stigma surrounding dementia have shared their personal journeys living with the condition.
Julie Hayden and Gail Gregory, the self-proclaimed ‘dementia rebels,’ featured on Tuesday’s This Morning to mark Alzheimer’s Society’s Forget Me Not month.
Chatting to hosts Ben Shephard and Cat Deeley, Gail, from Lancashire, disclosed she had received her diagnosis in 2019 aged 54, and was informed at the time she only had six to seven years to live.
“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,” reports Lancs Live.
Eventually, Gail chose to consult a medical professional and described the assessments she underwent at the doctor’s that proved challenging, 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 also revealed how she had been suffering from “life-changing” symptoms for more than five years when she was diagnosed, but was dismissed by the doctors.
She was told she was depressed and going through menopause, and it took Julie more than five years for a diagnosis.
Julie and Gail are now both supporting other people with dementia, particularly younger people, and fighting back against the stigma of people living with the condition.
As she urged for more training and information to support doctors, Julie said, “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.”
Sharing her gratitude for the support they’ve both received from friends, family and those spreading awareness, Gail read: “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.”
She 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 https://www.alzheimers.org.uk/