Seven people with dementiasharethe 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.
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.
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.
It is always better to be open and acknowledge the diagnosis
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.
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.
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.
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
Seven things you should know about dementia – Admiral Nurses series
Seven of our specialist dementia nurses, known as Admiral Nurses, share the things they think everyone should know about dementia