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Peter’s story: "I’m definitely ‘living with dementia’, not ‘suffering’ from it"

Peter shares how stigma around the condition caused him to keep his diagnosis of young onset dementia a secret at first.

Peter and his wife Teresa visiting the church where they were married

Peter and his wife Teresa visiting the church where they were married.

It’s so important that we show people that being diagnosed with dementia doesn’t mean that life stops. But when I was diagnosed with young onset dementia at the age of 50, it’s fair to say I didn’t see it that way. It was such a shock that I kept my diagnosis secret for over a year.

Dealing with stigma

I know now that it was the wrong thing to do, but at the time, I was embarrassed to have this condition. I felt like a fool and was as guilty as others in thinking it was something that only affected the older generation.

At the time, my wife Teresa and I wondered: “Do we tell people? Would they look at me differently? And would my business suffer as a result if they found out about my diagnosis?” That was very difficult to deal with, especially as there can be a stigma around conditions such as dementia.

Prejudices around dementia

Even now, because I don’t know what’s happening in the world – or if I do, it’s only in the broadest terms – I feel foolish and sometimes conversations can be difficult.

I don’t have a large D on my forehead and so it’s not obvious I have dementia. People will say, “You look normal,” – or even worse, they tell my wife I look normal because they are too embarrassed to tell me direct to my face.

Peter and Teresa in Great Yarmouth

Peter and Teresa in Great Yarmouth

Dementia is still seen as an old person’s condition and certainly not one that affects a man in his fifties who looks physically fit and healthy. There are all sorts of prejudices around living with dementia. People might think you’re a fraud if you are trying to claim benefits, or if you’re not working.

Living well with dementia

Since my diagnosis, cycling has become a passion of mine. I cycle most days and have done a number of cycle rides for charity. I’ve spoken at dementia events, taken part in podcasts and have even written a book which focuses on how I live in the present.

I’m hoping that by sharing my story, I’m helping to change perceptions of what life is like with dementia – I’m definitely ‘living with dementia’, not ‘suffering’ from it.

Peter was diagnosed with young onset Alzheimer’s disease in early 2015. He lives in Saxmundham, Suffolk, with his wife Teresa. You can find out more about him on his website.