“What is the one thing I wish other people knew about my experience of dementia?” asks Keith.

It’s Keith Oliver here, checking into Dementia Diaries. Recently I was asked to write a piece under the title “What’s the one thing I wish other people knew about my experience of living with dementia?” And this is my response to that piece of writing in 300 words – that was the maximum I was allowed.

Where does one start to explain what it’s like for me to share my brain with an unwelcome guest? One who seems at times to lie dormant and causes little disruption or disturbance, whilst on other days the fog descends and life becomes far more difficult and challenging. That’s the main thing to explain – that each day’s different, and each person with dementia is different. No two days and no two people are identical. Often I will understand what keeps my dementia at bay which is stimulation, activity, a connection to others, and a sense of purpose, (which is less clear at times) is what brings down the fog and makes accessing these positive activities more difficult. Because there is no one true representation of dementia. It is a progressive condition, which in my case is Altzimhers, the disease of the brain. And it can be tempting for people in their ignorance or nativity to think, and indeed say, “You don’t look like you have dementia”. This is both distasteful and insulting. I wonder, would someone with cancer face the same question? I’m sure they would not. And if they are able with treatment (something we are bereft of) to live well, they would be applauded and identified as a good role model. “What is a good role model for someone with dementia?” I ask myself. A person frail, scared, old, immobile? Is that a good role model? Something to aspire to or celebrate, or something to be fearful of? No wonder that dementia is causing of so many surveys, the most feared health condition amongst the over 40s. I do wish this wasn’t the case, it need not be. Thank you.