A dad-of-four was diagnosed with young-onset dementia after suffering with memory problems for 20 years.
Roughly 900,000 people in the UK have dementia, with more than 42,000 of those having young-onset dementia, which is when a person develops the condition before the age of 65. New research from the Alzheimer's Society found 27% of people with dementia in the North West of England waited more than two years between noticing symptoms and getting a diagnosis, in large part because they assumed symptoms were a sign of aging.
Southport man Phil Burdekin, 63, kept forgetting appointments and would miss turnings while driving lorries, mistakes easy to dismiss as stress-related. But over two decades, the symptoms got worse. Phil, from Ainsdale, said: "I was getting worried - I didn't know what it was, and then my wife got fed up of me asking the same questions again and again, so she said I'd better go to the doctor."
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Phil said "it was a nightmare coming up to it", telling the ECHO: "It was very stressful. I cried a lot. It was killing me not knowing anything." He was just 55 when a scan revealed he had vascular dementia, the second most common type of the condition after Alzheimer's disease. Symptoms, which tend to get worse over time, include memory and language problems, slowness of thought, difficulty planning, concentrating and walking, and feeling disoriented, according to the NHS. Getting diagnosed sooner would have "saved a lot of upset and stress", but, Phil said: "I'm glad I went when I did because I think I'd be a lot worse now if I didn't."
Steve Green, the Alzheimer's Society's area manager for Merseyside and Cheshire, where 31,957 people have dementia, said: "Asking the same question over and over again is not called getting old, it's called getting ill. If you're worried for yourself or someone you love, take the first step this Dementia Action Week – come to Alzheimer's Society for support. The stark findings of our survey show just how dangerous it can be to battle dementia symptoms alone and put off getting help.
"Yes, getting a diagnosis can be daunting, but it is worth it. More than nine in 10 people with dementia told us they benefited from getting a diagnosis – it gave them crucial access to treatment, care and support, and precious time to plan for the future. With the pandemic causing diagnosis rates to plunge, it's more important than ever to seek help. You don't have to face dementia alone, we're here to support everyone affected."
Phil's family has been his rock since being diagnosed. His ex-wife is still his carer, and his 11-year-old daughter is the "light of [his] life at the moment". But forgetting them is what he fears most as his condition deteriorates over time. A few months ago, Phil saw teenagers having a party on the grass near his house before the 'terrifying' realisation they weren't actually there. It was a hallucination, which "can be horrendous".
He doesn't go out much anymore as he'd find himself sitting in the background because conversations fly over his head, even if he can hear the words. Phil said: "Pity, that - I used to enjoy myself. I felt rotten, suicidal even. It's difficult and I felt down, just trying to get myself out of that situation. It does affect you a lot, and you find that some people won't bother talking to you anymore because they don't know what to say. It's very lonely."
But, Phil's "always been a positive person", so he keeps himself busy with crosswords, puzzles and online colouring. He said: "After getting the diagnosis, life carries on and with time you become more accepting of it. I joined a support group in Southport where I met other people in the same situation as me and I made new friends. This brought a lot more positivity and the fears of having a dementia diagnosis started disappearing as it made me feel I wasn't alone. Getting a diagnosis has changed my life, for the better in some ways."
There's no cure for dementia, but a healthier diet, more exercise and less tobacco and alcohol can slow the condition's development by reducing the speed at which brain cells are lost, according to the NHS. Unfortunately, this can't reverse damage done before diagnosis, but the Alzheimer's Society has developed a new checklist to speed up the process by helping patients and families identify symptoms and communicate them with their GP.
Dr Jill Rasmussen, the Royal College of General Practitioners' clinical representative for dementia, said: "It's vital for patients, their families and GPs that conversations with the potential for a diagnosis of dementia are timely and effective. This resource could make a real difference in identifying those people who require referral for a more detailed evaluation and diagnosis of their problems. We're asking anyone who is worried about possible dementia symptoms to use the checklist and share it with their primary care team."
For Dementia Action Week, running from Monday, May 16 to Sunday, May 22, Alzheimer's Society urged people worried about themselves or someone they love to contact the charity for support. You can visit alzheimers.org.uk/memoryloss or call 0333 150 3456. For callers who do not have English as their language of choice, Alzheimer's Society can arrange a simultaneous language translation service.
