A man has spoken out after it took 18 months for his father to be given an Alzheimer’s diagnosis – saying “families deserve better”.
Jim Fethon had gone to the GP after his family – including son Michael, 35 – noticed something “wasn’t right” with him.
But it would be more than a year-and-a-half before they received answers.
It comes as research published this week by Alzheimer’s Society found that families affected by dementia are being forced to put their lives on hold by prolonged waits for a diagnosis.
A survey of over 1,000 carers reveals nearly half of people (45%) waited more than six months for a dementia diagnosis after first seeking help, with devastating consequences for their work, finances and mental wellbeing.
It’s all too familiar for the Fethon family – with Michael even leaving his job at one point while trying to find answers for his father.
Michael, from East Yorkshire, said: “We first noticed something wasn’t right with Dad in 2020, but we had to wait 18 months for an official diagnosis.
“The GP initially put his symptoms down to anxiety and then we were passed from one team to another.
“The long wait and uncertainty that came with it placed so much pressure on my family.
“It caused so much extra stress and anxiety in what was already a really difficult time.
“Our lives were on hold and centered around appointments which also affected my work.
“I eventually had to leave my job as I had taken so much time off to take my dad to appointments around the country.
“When Dad was finally diagnosed with Alzheimer’s disease, the news was delivered very casually over the phone.
“There was no offer of support. No follow-ups. Nothing.
“Just a couple of leaflets in the post and then we were on our own.
“I have family members who have had cancer and they had so much more support than we did for Dad’s dementia.
“Families deserve better and I don’t want to see anyone else go through what we did.”
Alzheimer’s Society is calling for a new nationally-recognised standard that would mean within 18 weeks of a GP referral, someone with dementia would receive an accurate diagnosis, together with a care plan and access to treatment, where appropriate, as reported by Need To Know.
The survey showed the toll diagnosis delays can take on affected families, with nearly half of carers (46%) saying the wait had affected their work, while more than a third (35%) said it had made it harder to plan for the future.
Michelle Dyson CB, CEO at Alzheimer’s Society, said: “A dementia diagnosis can bring answers, understanding and access to the support, treatment and care that can make a real difference to people’s lives.
“But we know things can be so much better.
“Too many families spend months, and sometimes years, waiting for answers while their dementia progresses.
“It is like trying to plan a journey without knowing where you are going or when you will arrive. “Behind every delayed diagnosis is a family living with uncertainty and trying to prepare for the future without the support they need.
“You would never accept someone being diagnosed with cancer and then left to work out the next steps on their own – yet that is still the reality for too many people affected by dementia.
“Dementia does not wait, and neither should diagnosis.”
The findings come as Alzheimer’s Society supporters and campaigners deliver an open letter calling on the government to set a bold and ambitious plan for dementia, including faster access to diagnosis, treatment and support.
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