Dementia Support Line
Real stories
My dementia diagnosis experience was abhorrent so I became a campaigner
When John was diagnosed with young-onset Alzheimer’s disease, it was a huge shock to him and his family. He received little support after the news was delivered and is now campaigning to improve the diagnosis experience.
I spent my career as a mechanical design engineer in Coventry. My apprenticeship focused on aircrafts, but I soon moved onto cars.
Towards the end of my career, the work opportunities were shrinking. This led to me being made redundant three or four times over the last five or six years of my working life, which was unsettling for me and my family.
My family took the brunt of me being snappy, dogmatic and less empathetic. This change in personality was accompanied by mood swings we initially put down to mild depression.
John and his family first thought his changing moods were due to depression.
Shocked by a dementia diagnosis
When I was diagnosed with young-onset Alzheimer’s disease in 2014, it was a huge shock.
I’d been sent for a brain scan by my GP after blacking out, and as soon as the results came back, I was sent to a Memory Clinic for more tests. The scan showed that the left frontal lobe of my brain was dead.
The doctor delivered the diagnosis of Alzheimer’s as gently as he could, but I was still completely taken aback. He may have asked if we had any questions at the time, but I was so shocked I don’t think we asked any. Then the appointment was over, and we were left to it.
When you’re told you have Alzheimer’s your mind goes to the worst-case scenario. We had so many unanswered questions.
Left with little support
After I was given the clinical diagnosis, there was no practical or emotional support – we had to sort ourselves out.
We had no idea what to expect and it was only when we were put in touch with Alzheimer’s Society weeks later that we got answers.
I can’t tell you how much stress and worry the delay caused.
My Dementia Support Worker from Alzheimer’s Society helped to connect us with social services to find out if we could access any support – we couldn’t, as it turned out.
But she told us about Singing for the Brain, which was a godsend. She also helped us plan for the future, which was so important.
Learning about support services from Alzheimer's Society was beneficial for John and his family.
What needs to change
My experience of being diagnosed with Alzheimer’s was abhorrent, with no support afterwards for such a life-changing moment.
I’m calling on the Government to improve the diagnosis experience so no-one else has to go through what I did.
The person being diagnosed needs to know that they’re not on their own, there is help out there, and where to find it.
Care and concern is evident from the medical professionals, but there needs to be an understanding of the whole journey of diagnosis, not just the bit they’re dealing with.
It’s so important there is no delay between the medical diagnosis and the social support, to stop the added stress and worry for those affected by this devastating condition.
This October, I’m joining Alzheimer’s Society at the Conservative Party’s annual conference in Birmingham. I’ll be talking to Members of Parliament and telling them about my experience of getting a dementia diagnosis, and what needs to change.
Ask your MP to visit us at Party Conferences
As the first step to living well with dementia, everyone should be able to access a timely, accurate and quality diagnosis.
Invite your MP to visit our party conference stand – and help put people affected by dementia back in the driving seat.
Veronica Allen
says