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

Lorraine Brown, in Kent, shares why she calls sundowning her ‘twilight zone’ and how it affects her.

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

Lorraine Brown smiling, wearing a green lanyard and stood in front of a TV screen

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.  

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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. 

Your experiences

Is there an aspect of living with dementia that you’d like to share? Email us to find out more.

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11 comments

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I recently sent a post in regards to my father’s experience with dementia and see this is more specific to sundowners. He definitely struggles with this and it starts about 4 PM to bedtime. After 4 he isolates, is not aware of much and disengages from most things going on around him (easily confused) and calls out for people who are not around or situations that are not happening. However, the next day he isolates good (relatively) until about 4 that next day.
Thank all of you for your input and feedback. My 93 year old father has dementia but the savings he accumulated over the years has allowed him to have in home care. It makes a world of difference as there are people around him all the time and his environment is comfortable and stable. Also, his vitals are good and we have hospitals AND THEY ARE AMAZING. In particular, our family is providing good support and he really lights up when we come to visit. These things were not happening when he was more isolated and alone “in his own world” Although these things happen due to the nature of the disease having people around him and loving “touching” him and taking care of all his needs has a really made a difference. If you do not have hospice and qualify for it I definitely suggest you get it for your loved ones. I was doing most of the care taking for about a year and it was mentally exhausting and blurred the boundaries of father and adult son. I found myself getting exhausted and resentful. Once we got help, that dynamic shifted back again. I am not a big advocate of nursing homes as they tend not to give our loved ones the care they need and I believe this leads to earlier death as they give up, do not feel safe, cared for, or loved. My experience has been all about the environment we have been fortunate enough to create for him to meet his essential needs. As this was happening his mood improved a great deal and he is much more attentive to people and environment around him. This has been my experience. It has been a team effort for sure and I highly recommend that family members do not take this on by themselves. There are a lot of resources out there !
Dear Lorraine Thank you for kindly explaining your experience. It is truly helpful and much appreciated My sibling has been "twilighting" and we had no idea what was happening to her. Thank you so much for sharing.
Dear Lorraine Thank you for kindly explaining your experience. It is truly helpful and much appreciated My sibling has been "twilighting" and we had no idea what was happening to her. Thank you so much for sharing.
Thanks for this…..very helpful, we are suspecting my mum(83) has Alzheimers…she is great in the morning but by mid afternoon she changes and starts to talk about her boys coming home from school (I’m 61 !). She gets very agitated and muddled, its very distressing. This explains a lot
Thank you for your experience.My mum is 75 and exhibits this sundown phenomenon from early evening till the next day around midday.She does not sleep at all . This just started 3 nights ago What do we do to make it easy on her?
Thank you for explaining this. It is really helpful. I didn't know the symptoms can last until the next day, this explains what I have noticed with my Mum who has Alzheimer's.
Thank you very much for explaining your experience. My mother has this disease and she will not sleep. She’s always fussing and gets angry because she wants to go.
I now have these symptoms and I didn't realise till I read your article, although I am usually all right till about 4p.m.
Thank you for sharing. My 97 year old mother has been dapping at her chin and saying its wet for a while and can get very anxious, tired and has mood changes in late afternoon. The clocks going back are going to make it worse. Mum has recently been diagnosed with Vascular Dementia but is in denial. I care for her around 8 hours a day. Looking at care homes but again she's refusing. It's tough
Thank you for sharing this. My 90 year old mother has started having exactly these symptoms - which I hadn't heard of before. Her dementia has just moved to a different level, so this helps me understand.
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