Koula spoke to a doctor after noticing problems with her memory, but it took several years for her to get a diagnosis of young-onset Alzheimer's disease. Her daughter Zoe explains the challenges they've faced and what a diagnosis means for them both.
I’ve told you that before. I’m not saying it again.
That was something Mum’s then, six-year-old grandson, said to her. She sort of laughed about it at the time. But it hurt. And it stuck.
It was the repetitive questioning that we remember coming first, and after this particular moment in 2016, Mum decided it was time to get tested for dementia.
Difficulty getting a diagnosis
Between 2016 and 2018, Mum had several tests, assessments, and an MRI. But over and over again, the doctors told us it was anxiety.
It’s true, Mum had always struggled with anxiety, alongside several other health challenges, but we knew it was more than that.
The whole process only made Mum more anxious, but because her early scores in the assessment were borderline, her Alzheimer’s was never acknowledged.
We knew that the earlier we received support, the more of Mum we would have left.
Mum is Greek-Cypriot and moved to England at the age of 11. Her lifelong skill was baking. She was more than simply a home baker, it was her industry and she had it down to a fine art.
She’d have been deserving of a handshake on the Great British Bake-off, but she began baking less and less, saying she had ‘lost her mojo’.
Then she stopped altogether, and more symptoms crept up on her and us.
At the end of March 2017, Mum nearly lost her life after needing serious stomach surgery. Luckily, she pulled through, but with that, came a dramatic downturn in her symptoms. Her memory and processing skills were much worse as a result, which is when we knew we needed further assessments.
We didn’t want her deterioration to escalate if measures could be put in place to support her.
In September 2018, mum was finally given the diagnosis of early onset Alzheimer's Disease.
Despite expecting it, hearing the confirmation sent me cold and filled me with dread. But we needed to know.
The wait to receive these words was frustrating, and what’s more, the support we received afterwards was inconsistent.
It felt like we were starting from scratch every time we spoke to someone new about Mum's condition. With the constant changes in staff along with a lack of resources due to the demands on an overstretched NHS, it was hard to receive the help we needed. Until we connected with Alzheimer's Society, that is.
Putting our needs first
It’s not easy to focus on the positives that have come from a diagnosis when you have fought so hard for support. But with the Alzheimer’s Society’s help we are reminded of these regularly. We have found people who take the time to know us and put our needs first.
For over two years, Mum has attended Singing for the Brain sessions, where I have been provided with information and learnt techniques needed to help Mum stay happy and live well. We've also found out how we can access further support from the Alzheimer’s Society when we need it.
This is all possible because of a diagnosis.
Mum knew the signs, but for so many others, common misconceptions around ageing are causing them to miss out on the support they desperately deserve.
With a growing diagnosis backlog caused by the pandemic, more people will experience the same frustrating, difficult wait that we did.
Let’s give everybody access to a high-quality, accurate and timely dementia diagnosis
Too many people in too many places are missing out on the support that a dementia diagnosis can bring. Invite your MP to meet with my Mum and me at our Dementia Action Week event in parliament on May 17th.