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Josh’s story: "Dementia isn’t only an old person’s condition"

Josh talks about his experiences with the diagnosis of young onset dementia in his mum, Joanna and how it impacted their family.

Josh and his mum Joanna

Josh and his mum Joanna

I was 20 when my mum was formally diagnosed with dementia in early 2015. She was only 57 – the reality is that the signs were there at least two years before, and probably more.

The condition has taken her away from me. From a fairly young age, my mother has been missing from my life. I also know that she will not be there for those key moments in my life: getting married, buying my first house, and having my first child.

The first signs

It began with her not being able to remember PIN numbers and her spelling becoming worse. The latter just seemed so out of place, especially when she used to be a lawyer. I wondered whether it was stress, or her feeling out of place during retirement after working in a job she loved and excelled at for so many years.

I looked up some of the symptoms and it was all pointing to dementia, but I was adamant that it couldn’t be this. Having been a corporate lawyer, my mum’s brain was why she had been so successful. She used to read a huge amount (sometimes several books at a time) and encouraged me to work hard and keep learning from a young age. How could this be happening to my mum who had been so intelligent, so committed and so hardworking and successful throughout her life?

Coupled with this is the fact that you just don’t entertain that this could be dementia in someone so young. I always thought that it affects people so much older.

Time away from home at university

When my mum was having various consultations and was eventually diagnosed, I wasn’t at home, having started university in September 2014.

Quite a good coping mechanism of mine is to just get on with life, but you can only go so far with this mentality. I feel that young onset dementia is quite different from conversations around mental health; people know about anxiety and depression for example, but it can still be hard for them to talk about it. With young onset dementia, it’s a case of people not talking about it because they just don’t know that the condition exists.

At university, I went to see a counsellor a couple of times; it was great to have the support if I needed it. I did talk about my experiences to some of my closest friends. I don’t think I’ve seen young onset reported about widely at all so it must have been difficult for them to empathise with my mum’s illness.

It was when I graduated in 2017 that mum’s symptoms became much more obvious to me. I could see her confidence decreasing; her speech getting worse; she wouldn’t know her way round the house and she needed even more help and care from my dad. I hadn’t seen her for a number of months at a time, so the changes were a big shock.

Support from employer

I have been working from my parents’ home (as most people have been) for nearly a year and have therefore been able to spend some time with my mum and dad. My mum has experienced rapid deterioration following lockdown and the resulting lack of physical exercise and stimulation – visits from friends, family and outdoor exercise were out of the equation.

I am very lucky in that my employers take the mental health of their employees extremely seriously. There have been no issues with me taking time away from the office for family-related challenges, such as mine.

Support for people going through a similar situation

For anyone going through a similar situation, please don’t bottle it up and try to deal with it on your own – make sure you speak to friends, family or a counsellor. You’re much more vulnerable in your late teens and early twenties than you think. You might be an adult legally, but you’re still feeling your way in the world. The most valuable type of support for me would be to see my dad receiving practical advice.

It’s he who has had to look after my mum 24/7 for several years and see his wife’s health decline so starkly. It’s he that has gone through the real torment.

A more inclusive world for people affected by young onset

Dementia isn’t only an old person’s condition and we have to try and break that stigma to ensure that we have a care system that works for younger people as well. Just because the majority of people with dementia are elderly, you cannot forget the people who are affected at a much younger age, which includes my mum, my dad, and me.