The Fear

During a Dementia Friends session yesterday, I met an inspiring lady who has Alzheimer’s but, in her own words, is stubborn and is determined to live well with it. Living well with dementia is central to the idea of making society more dementia friendly and now matter how many times I repeat the phrase, it’s only when I speak to someone who is living those words that the real impact hits home. So thank you, M, for making my message real.

And yet, despite the positive intent, we can’t deny that dementia is cruel and frightening. A few days ago, I was speaking to someone whose parents both live with dementia. She had cared for them at home for several years until they moved into a care home. In the process, she’d dropped out of the job market and is now unemployed…and scared. Very scared. She’s scared of losing her home and, in her words, living her final days in a cardboard box. But she’s also very frightened that she will follow her parents into dementia.

I know that feeling. From the moment Mum was diagnosed with Alzheimer’s Disease, I started to read about dementia. Like a student cramming for an exam, I tried to take in as much as possible to support Mum as much as I could. The flip side of that process is that as I became aware of “the signs”, I started to see one or two of them in myself. At low points, I convinced myself that I was starting along the same road as Mum. At this distance, I can smile at my foolishness. So what if I couldn’t think of his or her name? But I bet many people very close to someone with dementia have imagined themselves in the same situation.

Some forms of dementia – a few – are hereditary but most aren’t. Alzheimer’s, the most common type, is 99% non-hereditary. So, I tell myself, there is no more chance of me developing dementia than any of my friends whose families are blessedly untouched. But still occasionally, I wonder. 

Yes, it is possible to live well with dementia. My good friend Ken Howard, a colleague in the Warwickshire Campaign Group, is a larger than life example of that. Last night, he excitedly told me about an awareness tour of Scotland he’s planning and more power to him and to so many others.

But the fear is still there. Alongside the emotional cost and the sometimes crippling financial strain dementia places on those whose lives are affected, an anxious glance to the future is never far away. 

 

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