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Seven things you should know about dementia according to people living with it

Seven people with dementia share the things they think everyone should know about the condition.

We’re human beings just like everyone else

“Someone once asked me, ‘How should I speak to you?’ I responded by asking, ‘How should I speak to you?’ We’re human beings just like everyone else. Talk to us just as you would wish a stranger to talk to you.”

– Wendy Mitchell, a best-selling author and blogger who was diagnosed with young onset Alzheimer’s disease aged 58. She is also a member of the Young Dementia Network Steering Group

Memory is only one of the functions that is impaired by dementia

I wish people understood that dementia isn’t just a condition where you become absent-minded. Memory is only one of the functions that is impaired by dementia, and not the most serious for many of us. Sensory overload, excess emotion, balance problems and lucid dreaming are also common in early- to mid-stage dementia.

– Pete Middleton, who was diagnosed with young onset Alzheimer’s disease in 2019, aged 64.

Having dementia is not the end of your life

“I wish I had been told that having dementia at 64 is not the end of your life. Yes, there are things I have had to give up, like a job I loved, and my driving licence. But I have discovered a new me with hopes and dreams I never knew I had. I love my lifestyle even if it means less money coming into the household. Hobbies I never had time for have been started again, and I have discovered new ones. Dementia is life-changing, but I am grabbing my new life while I still can. Nobody is guaranteed tomorrow.”

– Jake Sutherland, who was diagnosed with frontotemporal dementia in August 2021

“It is difficult when you meet friends for the first time after your diagnosis. You can always tell when people know, because they don’t talk to you about it. Gradually, as time goes on, they’ll give you a little nudge and say, ‘How are you, dear?’, which is really annoying! But they can’t help it because nobody knows what to say. That’s why I think it’s better that I just come out with it and then they don’t have to worry about it. They’ll be sitting around thinking, ‘I wonder if we ought to say something?’ It is always better to be open and acknowledge the diagnosis.”

– Rosemary Lang, who was diagnosed with mixed dementia in 2016. She features on the Discovering Dementia podcast, which is hosted and produced by her daughter, Penny Bell

Dementia can affect any part of the brain, and any function

Dementia can affect any part of the brain, and any function – it’s not just about memory. The disease usually develops for some time before symptoms become obvious, and getting a diagnosis simply helps you understand your symptoms. The diagnosis does not mean you can no longer do anything or take the usual risks of daily living. Nor does it mean you cannot continue to do the things you enjoy or learn new skills. Most people can continue to enjoy doing what matters to them for many years.

– George Rook, who was diagnosed with mixed dementia in 2014 at the age of 62 and is a member of the Dementia UK Lived Experience Advisory Panel (LEAP)

Everyone with dementia is unique

Everyone with dementia is unique and their dementia presents different challenges on different days. Dementia does not just affect the over-70 age group and is not all about the stereotypical image of someone old in the late stages of the condition.

– Keith Oliver was diagnosed with Alzheimer’s disease at the age of 55. He is part of the 3 Nations Dementia Working Group

It is possible to have a good quality of life

I received very little support or information about dementia when I received my diagnosis. I would like people to know that life goes on after a dementia diagnosis and not all is lost. It is possible to have a good quality of life, have meaningful conversations and take part in daily activities with the right support and care.

– Masood Qureshi, who was diagnosed with frontotemporal dementia in 2010 and is a member of LEAP