As night falls, dementia can wreak more havoc on patients and carers
My earliest exposure to dementia, as a six-year-old, seemed like a crime scene: poo smeared on the white walls of the downstairs loo. My mother wasn’t in the house – she was out chasing my grandmother, by then far down the road knocking on neighbours’ doors demanding to know where Margaret was.
Poor granny. Shipped hundreds of miles to our house because Aunty Margaret couldn’t cope, she had reached the stage of dementia where only a residential home could. The matter was hushed up; in the 1960s “senility” was private distress. My father lived the next 40-odd years in grim fear he’d inherited it.
He hadn’t, though. It was my poor mother, her blood pressure cooked by a lifetime of serving him, who had a stroke, got vascular dementia, and drifted away from his demands. Towards the end they lived next door to us, and I was their emergency service.
In the early hours he would burst into our bedroom shouting: “Your mother won’t listen to me, won’t stay in bed.” He hated being a carer. He hated the fact she wouldn’t obey him any more, that she answered back and did irrational things. That she whispered “Nasty man” to me. I confess it brought me dark amusement. The worm had turned. After I’d settled her into bed again, I’d leave their house and whisper: “Atta girl! You tell him” into the night.
I didn’t know it, but that was my first encounter with the dementia syndrome some call sundowning, an elastic term to describe the increased confusion and behavioural changes associated with the fall of darkness. Although sundowning is not medically recognised and some experts remain sceptical, people love a label. It’s human nature to try and rationalise the irrational, to box up chaos.
Now I’m a primary carer (and more prepared to cut my late father some slack) I’ve become a member of an elite club nobody ever wants to join, the estimated 700,000 in the UK at present looking after someone in the family with dementia. At some point in our lives, the figures suggest one in three of us will do this. We will all almost certainly know people who do.
Now I’m a primary carer I’ve become a member of an elite club nobody wants to join
Sundowning decrees how tortured both carer and family member can be at night, and how fit for nothing the following day. The symptoms are many. With darkness, dementia can bring disorientation, anxiety, anger, frustration, mood swings, aggression, paranoia, restlessness and hallucinations. Often, it manifests as a state of persistent fight or flight. It’s immensely real to the sufferer and rational reassurance doesn’t work.
But it’s random. It’s not every night. You can’t plan for it. The situation is ever-changing with the exigencies of a damaged brain, making strategy impossible. Should you rapidly empty your savings on overnight care, which the state can’t afford to provide, when you can’t predict when it will be needed?
And actually, although I’m a newbie, I find myself challenging some of the received wisdom. Could sundowning not be partly explained by the acute, crushing exhaustion that people experience after battling day-long to make sense of things? I’ve never witnessed tiredness like it.
Some have suggested the syndrome may be a phenomenon of caregivers’ perception, shift change shorthand, a lazy label more for their own convenience. Wendy Mitchell, with a diagnosis herself, says in her bestseller What I Wish People Knew About Dementia that few people realise just how the illness changes one’s relationships with one’s senses, emotions and communication.
Exhausted as we all are, maybe we need to understand better how people with dementia feel, rather than just what they physically need.
Photograph by Ashley Coombes
Social links
Copyright © 2025 Tortoise Media
All Rights Reserved
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.