Real stories

My experience of ‘sundowning’ as a person living with dementia

I am pleased to be given this opportunity to raise awareness about ‘twilighting’. 

It affects people differently and this is my story of what I experience.

For me, it does not have any connection with the sun going down or the time of day or season. 

This is why I call it my ‘twilight zone’ rather than sundowning. 

First signs of twilighting

By 2pm every day, my brain starts to shut down. The first sign is that I start to salivate and need to dab the sides of my mouth. I become quiet, unsteady and struggle to understand people. 

I’m told that my eyes glaze over and I'm hit by extreme tiredness. 

It’s like being in an alternative universe where nothing quite makes sense. I'm in the here and now, but I also feel like a zombie. I have nanosecond flashes of things, words, faces, sounds and places, that are sometimes connected, sometimes not.  

My coping strategies

Since I was first diagnosed with young-onset familial Alzheimer's disease in 2014, my twilight zone has changed. But I have worked out strategies to cope with it. 

When I’m aware of the twilight zone beginning, it’s vital that I find a quiet sanctuary and rest. 

I do this to preserve my dignity – I don’t like people to see me in my twilight zone.

It doesn’t have to be my actual home, but I am most comfortable here because I’ve taken precautions to protect myself against the effects. These include having a gate at the top of the stairs to prevent falls and a smart home device to aid my awareness of who, when and where I am. 

Those closest to me know how to respond to my twilighting. They recognise the signs. They know to get me to a calm place without any fuss or drama. 

Staying safe at home

I now need two hours or more of rest and sleep to feel more in the here-and-now. But it varies so much.

How I spend the rest of the day depends on how I’m feeling – whatever I do, it’s important that I’m safe.

Occasionally, despite my best efforts, I may still be in the twilight zone possibly until the next day. 

When this happens, I stay in my safe space and do very little, maybe just potter around. 

If by reading this, someone realises that sundowning affects a person they know with dementia, I will have made a difference. It’s important for me to talk about it and raise awareness.