Do you think I’ve got dementia?
What do you see?
What do you hear?
What do you think?
When I told a family member of my diagnosis they said ‘that’s ridiculous, of course you haven’t. If you have, I most certainly have. I forget things all the time’.
The question is…what do you expect?
Do you expect someone who struggles with every word?
Someone who wanders away from home and gets lost every day?
Someone who can’t remember what they just said?
Because that’s the stereotype.
That’s what the media tell you, whether deliberately or by implication and suggestion.
Kate Swaffer is having battles with organisations in Australia whose members now and then refer to us as mad, loony, crazy…or just suffering.
And I was quite taken aback when a consultant I greatly respect not long ago referred to patients who are ‘demented’. I guess it was a medical term, but it betrays a doctor centric view of a person, rather than a person centric view. And that’s what we need to change.
We may have dementia, but the word demented still has old fashioned connotations of madness or demonic possession. We really should not use this word.
While I rarely see or hear the extremes in England, ‘suffering’ is a frequent description.
But in the press and TV we only hear stories about ‘patients’ who get lost…John Noakes in Majorca the other day…or who shout and scratch from their hospital beds (because they’re frightened and lost)…or who sit in care homes, silent and staring…
(NOTE: my particular hobby horse is Trusts reporting falls as unavoidable because the patient ignored advice. Well, when you’re ill, with or without dementia, or perhaps have deIirium, you do ignore, or forget, advice. So do something Different to prevent falls!)
In actual fact, the great majority of us go about our lives, often very happy, doing things we enjoy, or doing what we still can contribute to.
There are of course the many who do have difficulties with everyday living. Transport so they can get out, finding shops, paying, forgetting what they wanted and where they are…but they’re still living, and in their own minds they are alive as much as you or me.
Everything I read in blogs tells me that as our faculties fail we, at least for a time, are acutely aware of it and may grieve. We can’t be happy all the time, any more than you can.
So, to come back the point…
What do you see when you find out I have dementia?
I’ll tell you.
You see someone who has a lifetime of experience, skills and knowledge.
Someone who is mostly articulate and who likes words and wordplay.
Someone who is able to be part of a social movement to improve patient experience, care and self-care.
Someone who can concentrate and work on detailed analysis, and contribute to solution planning.
What you don’t see, and don’t need to see, is the person who cannot switch thinking subjects quickly.
who finds conversations against the radio impossible.
Cannot make quick unprepared decisions.
Someone who cannot root names in memory.
Who finds lots of noise and people agonising.
As others have said…
When you’ve seen one person with dementia you’ve seen one person with dementia.
Everyone’s brains are affected differently.
And so are our behaviours and skills.
See the person, not the dementia.
I tell people openly that I have dementia in order to challenge the stereotype.
Trouble is, many of them probably think the diagnosis is wrong, because I am so normal!
Welcome to my world.