Over the past couple of months, I’ve been following Nigel Bates’ (Paul Bradley) young onset dementia storyline in EastEnders.
His struggle to open up about his diagnosis is what resonated with me the most.
Watching him finally confide in Yolande Trueman (Angela Wynter) that he had young onset dementia and seeing all the emotions come with that, mirrored my own experience.
I know all too well the fear of becoming my diagnosis. But now I also recognise the importance of sharing my story.
There’s a myth that dementia only affects older people, when in fact there are over 70,800 people living with young onset dementia in the UK – and I’m one of them.
In 2013, I went to the doctors after experiencing fatigue, balance issues and tremors in my arm. After a series of tests, the consultant broke the news to me that I had young onset dementia, where symptoms occur before the age of 65.
I was 10 years younger than that.
Understandably, the news devastated me, yet I was offered no support and slipped into a deep depression.
All I could think about was how I’d lose my independence and how I didn’t want to become dependent on my husband, Bernard. It was no doubt this same fear that caused Nigel to leave his wife Julie.
I also feared that I’d miss seeing my son grow up and reach key milestones in his life. Or the impact this would have on my mum – I was supporting her through her own dementia journey.
However, caring for her actually better prepared me in some ways. I was very aware of the challenges that looking after someone with the condition brings – the changes in behaviour, the confusion and help that would be needed with everyday tasks.
I have vascular dementia, which is caused by reduced blood flow to the brain, but it was about five years after receiving my diagnosis that I started to experience some of the more common symptoms like changes in my mood and problems with short-term memory.
At times, my dementia hasn’t been easy on Bernard: I’m more argumentative than I used to be, and I can’t help around the house – for example I can no longer cook because I find it difficult to follow steps in order – but he’s been so patient with me and it’s made all the difference.
Yet when I started to tell people outside my family, ‘I have dementia’, they often didn’t know how to talk to me. The worry about how people might react is likely one of the reasons why Nigel hasn’t told many people about his diagnosis.
Some friends started to distance themselves from me and I was once told that I didn’t look like someone with dementia. All I thought to myself was: ‘What do people with dementia look like?’
As a gay man, this kind of discrimination sadly isn’t foreign to me. But being diagnosed with dementia this young meant I experienced stigma all over again.
Despite being with Bernard since the 90s, he wasn’t allowed to receive any of my medical information until we signed our civil partnership certificate. Instead, I was told it had to be my brother or son – it felt like double discrimination.
With each new hurdle and comment, I felt more and more alone, like no one truly understood what it was like to live with this condition in your late 50s or early 60s.
It was only after finding a local peer support group that I realised I wasn’t alone at all.
Meeting people who knew what I was going through and how I felt made me realise everything doesn’t change the moment you get your diagnosis – I was still me, still Andy, and that helped me to navigate my way out of the depression.
Now it’s been 12 years since I received my diagnosis, and while a lot has changed, one thing has remained constant: I’ve never allowed dementia to define me.
I’ve always been a workaholic but, after Mum died during the pandemic, I started using that trait to try and help others living with young onset dementia by dedicating my time to researching and lecturing healthcare professionals to try and debunk the myths associated with the condition.
I also became a Volunteer Ambassador for Dementia UK and am always telling people about the support available to them and how, some days, I still need it myself.
For example, when I’m having a down day, I know that I can call their helpline and speak to a dementia specialist Admiral Nurse for advice or support – they always understand what I’m going through and know just how lonely it can be living with this condition.
I might not remember what day it is or if I’ve eaten breakfast, but on the whole, I’m doing OK.
I concentrate on all the things I can still do, rather than feeling frustrated and angry about those I can’t. And most importantly, I’m still able to enjoy my life with Bernard and the rest of my family.
If you’d told me in the days after receiving my diagnosis that I’d go on to see my son get married 10 years later, I wouldn’t have believed you. But I did, and I remember it.
My biggest hope however, is that my story can be used as an educational tool to help people understand that dementia is not just a condition that affects older people. And I want Nigel’s storyline in EastEnders to do the same.
To him I’d say that, while there can be tough days ahead, life carries on after receiving a diagnosis of dementia – it’s a journey, not an endgame.
