The more I think about it, the more I realise how much in denial we all are about dementia.
The person with dementia often seems to be in denial themselves. I’ve heard so many stories about relatives or friends in the early stages of dementia who became forgetful or confused but tried to hide it or brush it off when someone tried to address it. A study by the Alzheimer’s Society found that over half (56%) of people put off seeking a dementia diagnosis for a year or more. “Dementia is the most feared health condition in the UK, perhaps explaining why almost two-thirds of people surveyed (62%) felt a diagnosis would mean their life was over.”
I know my father suspected something wasn’t right for years before his diagnosis. It was only after a fall while out walking with friends that he began seeking medical attention. I suppose physical symptoms felt easier to address than the mental ones.
I’ve written elsewhere about how clever dementia is in forcing the mind to overlook its own decline so it can thrive, unchecked. The person with dementia is, in a way, obeying a survival instinct: I must live. I must overlook what’s happening to my mind, or I might have to choose to die sooner than I naturally would.
But it’s not only the person with dementia who is in denial. Families often overlook early symptoms or attribute them to ageing or lifestyle changes. We told ourselves my dad was struggling with conversation because he was “out of practice” after lockdown, rather than confronting the possibility of dementia. Looking back, I can see that I simply wouldn’t allow myself to face it until it became undeniable.
Wider society is also in denial. People fear dementia for themselves—YouGov research reveals myths, like believing a diagnosis would prevent someone from walking alone or driving—and they fear it in others. Wendy Mitchell, for instance, has described friends initially avoiding her after she shared her diagnosis, only to feel relieved later when she seemed “like herself” again.
In the early and middle stages, a person with dementia can often present much as they always have. And if they don’t, it’s important not to make them—or yourself—feel more worried.
So, what is it that makes dementia so frightening?
In later stages, its unpredictability is unsettling. A person with dementia may behave erratically in a way not dissimilar to someone who has been drinking: friendly and affable one moment, confused or agitated the next. You never know whether they’ll respond, and there’s a real fear of making them angrier if you try to intervene.
Another source of fear is reflection. We fear dementia happening to ourselves, especially if our own parent has it. We fear exposure—walking around not fully aware of our words or actions, stripped down to a raw, childlike version of ourselves. A person with dementia can touch a deep, primitive part of us, one we struggle to reconcile with the adult selves we present to society.
In my father’s case, like many others, we know he would not have wanted to live this way. When his GP initially suspected Parkinson’s, he said he didn’t want it to progress to an advanced stage. And yet, here he is in a care home. I cannot know for certain if he is truly comfortable or happy. I think he’s okay, but it’s impossible to be sure.
I find visiting him difficult. It’s hard to see him so altered, and I realize that perhaps, subconsciously, I am obeying his wishes by not fully witnessing him like that.
Sometimes, walking through a sunny autumn park or lying on a yoga mat in shavasana, the thought hits me: he’s in the care home right now. What is he doing? Is he sleeping? For the rest of the day, doing my work or caring for my kids, I might move through life as if he doesn’t exist there. And then, in a quiet moment, looking at the luminous leaves beginning to turn orange or lying in corpse pose, I remember: he’s still here. He’s alive. And this isn’t how he wanted to be alive.
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