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AIBU?

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Informed consent

82 replies

CokeEverything · 27/07/2025 13:56

I'm making this post as something has been bothering me for a while.

I've been watching uploads on social media of a granddaughter posting videos of her grandmother who is in late stages of dementia.

The videos are touching and very moving. They are raising awareness of dementia as they are recieving many views. The granddaughter who uploads them is also very informative and gives some excellent advice how to handle the disease.

I could go on and on about how positive the videos are.

The niggle I have is informed consent and how this works for the lady who is the centre of these weekly recordings.

She doesn't understand she's being filmed. She doesn't know thousands of people are watching her every week. She can not unconsent to any previous consent she has previously given.

How do others feel about this?

I do enjoy the videos and I like the granddaughter and how she interacts with her lovely, witty nan. I can see there is genuine love, hurt and care there.

I'm on the fence if I should stop watching these videos as it's wrong or not. Or to keep watching them as it's lovely and heart-warming to watch but sometimes makes me feel uncomfortable. It's greatly raising awareness of dementia and will definitely be helping care givers with the skills and support how to care for their loved ones with this cruel disease.

OP posts:
CokeEverything · 27/07/2025 14:24

It is tricky. I mean is it the frequency of the videos? Would that make a difference? They are all over Facebook, tiktok plus maybe other places.

I just don't know if what I'm watching is right or wrong.

OP posts:
x2boys · 27/07/2025 14:21

It's difficult but how do you raise awareness without showing the reality ?
There are lots of programmes on tv thst have the same issue
My guilty pleasure is watching teen mom ( the American one) the kids are mid teens themselves now but have been filmed since the day they were born and in the earlier series many of the kids were filmed in less than desirable circumstances almost bordering on neglect.

Cadenza12 · 27/07/2025 14:21

I agree. I've seen similar posts and they make me feel uncomfortable. At the end of the day these videos are made for entertainment purposes and at person at the centre is not able to consent. Highly intrusive.

CokeEverything · 27/07/2025 14:13

I get the impression that when this lady was able to consent she would have been happy to be filmed however she's unable to understand that she's being filmed now. She can't say 'Not today ' or 'Don't film me doing this or saying that'. It's out of her hands. She's filmed in some quite distressing moods, never really undignified personal moments but sometimes it's too much.

OP posts:
Sherunswithwolves · 27/07/2025 14:12

Horrible and exploitative.

Bettysnow · 27/07/2025 14:10

I understand what you mean op this sort of thing also makes me very uncomfortable.
My late grandmother developed dementia and knowing her as I did she would have been absolutely horrified to think anyone was filming and watching her.

CokeEverything · 27/07/2025 14:02

The reason I've decided to write this post is that I've just seen a video of the granddaughter explaining that she is going to do a 'trend' where she leaves the camera in the room for 1 minute and sees what her nan does in the room for the minute alone.

The nan doesn't know she's being filmed nor does she understand. She's bed bound so it's just a video of her talking to herself in what's being referred to often as 'The dementia bubble'.

The word 'trend' has really left me uncomfortable.

OP posts:
Swipe left for the next trending thread