Following on from last weeks blog about ‘Repetition of Symptoms’ and the comments that arose from it, I felt I had to explain further.
Clinicians use their expertise and medical knowledge to diagnose. But the one question that everyone asks is left unanswered……’What will happen?’
Yes, as someone pointed out, everyone is different. Dementia isn’t kind and doesn’t give a set format to follow….and if it did, it would probably ignore the rules anyway. So clinicians can’t possibly state what will happen – REALLY?
No, they can’t if they look at it from a medical viewpoint, but if they look at it from a social model of care for their patients, how much more they could offer……
Yes this is a brain disease and clinicians can diagnose disease but we, as people diagnosed, need to understand the physical effects on our day to day living in order to survive a diagnosis and not automatically sink into depression and those around us sinking with us…
Clinicians need to think, work and learn differently. Their training must change.
If they’re not willing to move away from a medical model, if they’re not willing to learn more of the reality, then work in partnership with us,. They have the medical expertise but surely we have the social expertise of the reality.
Refer those newly diagnosed as a matter of routine to such courses as the 6 week Minds and Voices course, designed and delivered by people with dementia. We can answer the questions people desparately need answered – the reality, the tips for adapting, the financial questions, the everyday questions about living….
Not everyone is creative or imaginative to come up with simple solutions, not everyone knows where to get help. but many are and could share their tips for those unable to find them themselves. If those supporting someone with dementia hear us speak out about what’s going on in our mind it helps them to understand what may be going on in someone else’s brain who may not be able to, or may not want to, communicate……
The part we can play is equally important as the part played by the clinicians in delivering the diagnosis. But they seem to think their job is complete at diagnosis……why? Imagine if you were diagnosed with cancer and then left to find out for yourself what to do next…….
Someone last week said they felt angry at not knowing their grandma could be having hallucinations, but it’s important to remember that not everyone experiences the same symptoms. It’s being aware of what can happen and how to deal with them in that moment.
I consider myself lucky sometimes as I’ve lost the ability to feel anger – dementia has stripped me of that emotion. I feel happy or sad. Anger can sometimes be good but can also be destructive and usually to the person feeling that emotion.
Dementia is a complex brain disease and the differences in how we experience highlights this perfectly.
I often find random sentences written on post its on the floor when I wake in the morning….things that have been important in the still of the night and written unbeknown to me by me…..the other night I woke to find this one…
“Be open to what you learn – you never know when you might need that knowledge”
I’ll keep banging on and hope a few more light bulbs will appear. Too late for me and my playmates, but how much better for future generations…….