Dementia Diaries

At the beginning of a Dementia Friends awareness session, I often ask participants to sum up dementia in one word. It’s an absurd request, I know, but it gives a flavour of how people view it. “Fear”, “confusion”, “forgetful” are three of the most common answers. This evening, approaching the end of a day in which #dementiadiaries has been trending on Twitter, the word I’d chose is “inspiring”. Not the disease itself, of course, but the response to it is truly inspirational.

I’ve read so many stories today, stories of people living well with dementia, of people refusing to let dementia define them, of people striving to improve the lives of those living with dementia. Nothing has changed today, of course. Around 56% of the people with dementia in the UK are still without a diagnosis. Approximately 670,000 people are caring for someone with dementia in this country and caring is a 24 hour-a-day task, and often a thankless one.

But something is changing. It’s now six years, almost to the day, since Mum’s diagnosis. Back then I knew nothing about the disease which was to change my family forever, and in 2009, it was hard to find much information. This morning, I attended a local Alzheimer’s Society Campaign group meeting. These are always lively, positive occasions and I was struck by something my friend Ken Howard said. Ken, who has done so much to help people living, like him, with dementia, was talking about his diagnosis:

“It’s a huge mistake to give someone a diagnosis and not give them any information about living with dementia.”

There are far too many stories of people “fortunate” enough to be given a diagnosis but then left to fend for themselves. Frightening doesn’t begin to explain it. Then, we often suffered in silence but today, people are less prepared to accept the silence. There’s a long way to go to remove the stigma of dementia but I really think the process is underway.

Today dementia diaries hashtag has captured stories, thoughts, fears and hopes. One contribution concerned what a relative would write in her dementia diary if she could, which prompted me to think about what Mum would say about dementia today. Back in 2009, she was positive:

“I’ve got Alzheimer’s and I’ve just got to get on with it,” but it was a brave face on an often terrifying situation. I would find notes Mum had written and left around the house, and once or twice, I took a phone call which broke my heart:

“Duncan, help me. I don’t know what to do.”

So what would Mum say today? She tells me she’s fine when I ask her and she seems content, with laughter never far from her lips. But I think she’d be confused about why her condition is defined as needing social rather than medical care, and why she’s having to fund that care herself.

As I say, there’s a long, long way to go but people are talking about dementia, are talking about living well with dementia and have a clearly-defined ambition to change the way the disease is viewed. Truly inspirational.

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