A woman who was given the “devastating” news that she has Alzheimer’s at the age of 57 said she was initially told her early symptoms were due to stress.
Mum-of-two Jude Thorp first went to see a consultant after noticing changes to her cognitive abilities.
After initially being told it was due to 'having too much going on' in her life she went back and was eventually diagnosed with young onset dementia.
However since the diagnosis, she has realised “life can be rich” despite the new challenges she now faces. And she wants to encourage others who have similar symptoms to push for a diagnosis.
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Jude, who is now 59 and lives in Oxford, was working at The National Theatre when she started to notice changes.
She said: "I was not really playing my best game the last time I was at The National.
“It was a really simple show, I could do it standing on my head, and I was anxious and I didn’t know where I was. I was just very disorientated.”
Jude was experiencing bouts of memory loss, where she would often ask the same question multiple times, and she would forget significant conversations about plans.
Jude also felt really fatigued and struggled with her speech and word-finding.
“It was frightening that I would do something and not remember that I had done it, particularly in a work situation,” she added.
Jude believed these symptoms were associated with menopause, which, according to the NHS, usually occurs between the ages of 45 and 55.
She “couldn’t conceive” that she could have dementia due to her young age, but her wife Becky Hall, 53, a leadership and life coach and author, encouraged her to see a consultant.
During the first appointment in November 2016, Jude said her symptoms were dismissed and attributed to stress, which she said was “humiliating”.
“Imagine, you know, just being told that you’re a bit daft,” she said.
“That was my first time going to the doctors for something serious in my life and it was horrendous, and afterwards they said there’s nothing wrong with me.”
Jude said she was told by her first consultant that she was experiencing symptoms of memory loss because “she had too much going on” in her life.
But Jude and Becky did not stop there, as they continued to search for answers.
Jude visited two more consultants before undergoing an MRI and lumbar puncture – a procedure used to take a sample of the cerebrospinal fluid from the lower back.
After this, Jude was given the formal diagnosis of young onset dementia, specifically Alzheimer’s disease, in January 2021 – years after her first appointment.
“It was devastating because I didn’t know what it meant and what was going to happen,” she said. “I think I put my life on hold for a while.”
Jude said it was “very difficult” having to break the news to their two daughters, Izzy, 19, and Iona, 17, but she also felt a sense of relief, as not knowing was the “worst bit”.
She explained: “You have to mourn, you have to be cross or angry or upset. I mean, that’s part of grieving for something, isn’t it?
“But for me, I’m so lucky that I’ve got this diagnosis because I can still live well with it.”
Dementia is described as ‘young onset’ when symptoms develop before the age of 65, according to Dementia UK – the specialist dementia nurse charity.
Figures released by Dementia UK in September show that there is a “hidden population” of 70,800 people in the UK who are currently living with young onset dementia.
The charity says there is a misconception that dementia only affects older people and more needs to be done to dispel this myth.
Following the diagnosis, Jude’s GP put her in touch with Dementia UK’s Young Dementia Oxfordshire service, which Jude has described as “a lifeline”.
Her family received tailored support and advice to help them cope with the day-to-day emotional and practical challenges of living with dementia.
Jude explained that she has met several other people who have dementia through the charity, which has been “fantastic” as they are “all in the same boat”.
Acknowledging her diagnosis was extremely difficult, Jude explained that it also allowed her to “blossom” and continue doing the activities she loves, such as swimming.
Back in 2021, after her diagnosis, Jude completed a charity swim, raising £4,000 for Alzheimer’s Society, and she recently took part in the North East Skinny Dip in Northumberland.
Jude also volunteers for a number of food banks, which she really enjoys, and takes part in various research programmes to help health professionals better understand the condition.
Jude is encouraging anyone who may be concerned about their own symptoms to push for a diagnosis, as now she feels like she can be herself again.
“I think accepting a diagnosis of anything allows you to blossom in a way,” she said. “And I think it’s really important that life can be rich.”
She added: “I think it’s about living your best life and doing what you can.”
Jude’s best friend of 42 years Johnty Downham, 61, a former actor who lives in Oxford, has been hugely supportive, and said he admires her positive attitude.
He said: “The diagnosis has meant that the support from Dementia UK has come in and you’re not in a wilderness of anxiety and worry, and having no idea why you as a person or your friend isn’t the same as they used to be, which is really scary.
“So although it’s frightening to find out, in the end, there are lots of positives that have come with it.
“Before she knew, she felt embarrassed and had no explanation, and so, in a sense, getting an affirmation that something’s gone wrong was more positive in the end.”
To find out more about the work that Dementia UK does, visit www.dementiauk.org
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