Informed consent

[CokeEverything]

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.

On the surface it gives others an insight into Dementia, and helps raise awareness. However, you are correct, this elderly woman can't give her consent to be filmed, as she has no understanding of the situation. For this reason, the granddaughter is exploiting her grandmother, and the more likes/views she receives, the more she'll create content at her grandmother's expense.

Who has POA for the woman who is being videoed? Have they officially consented to this?

If not, there is no consent and the older woman is being exploited for social media purposes. There is a ton of info out there on what dementia looks like and dementia care. Is this presenting new and groundbreaking info that is a must see? The vast majority of people know what dementia is so I call bullshit on raising awareness.

How would she have felt about being videoed like this when she had capacity?

This does raise a point that should be included in medical POAs, whether or no the person gives consent for content to be uploaded and publicly shared.

I'll stop watching however it will do nothing apart from personally distancing myself from something explotive as there are so many views.

This girl has been approached by a charity to be an ambassador so there are people out there who are very supportive of her content.

Agree. It's awful.

I agree with you. The lady hasn’t given her consent to be broadcast.

Utterly unethical, very VERY tired of what and who people will exploit in order to get clicks and likes.

Is her name Jess by any chance? If so I have seen the videos and feel the same as you. She comes across as incredibly loving and well informed about dementia. She visits her nan daily and is very good at managing her condition and offering support. But like you I worry about the ethics of it. Would her nan want to be seen like this by hundreds of thousands of people if she had the capacity to understand? I doubt many would.

It’s one of those things isn’t it - how much is to raise awareness and how much is to raise her own profile?

Yes it is Jess.

She also has another channel where she vlogs her lifestyle away from her nan visits however the nan ALWAYS features in these vlogs too. She seems to be gifted many items from various companys and seems to be doing very well from the Vlogging platforms in a material sence.

I've always been torn how genuine it all is as to watch the relationship between nan and granddaughter it is very endearing.

He survived but he’s now physically disabled due to cancer as well as his bowel been permanently damaged to the point he’s now on a special diet and requires nutrition through a central line for 12 hours at night. It changed his life forever and he’s one of the lucky ones.

1 in 5 children don’t survive and it does need more awareness.

100% with you OP. I am against this too. That poor woman! Horribly exploitative and attention seeking of the lass doing it. It needs taking down. I was on the fence about Derek Draper who had been so badly affected by Covid being on documentaries done by Kate Garraway. That didn't sit well with me either.

Grand daughter may be raising awareness of dementia but I bet she is also monetizing the product for personal gain.

Absolutely chilling. Should be reported to adult social care.

Yes it is she.

She also has another channel where she vlogs her lifestyle away from her nan visits however he nan ALWAYS features in these vlogs too. She seems to be gifted many items from various company's and seems to be doing very well from the Vlogging platforms in a material sence.

I've always been torn how genuine it all is as to watch the relationship between nan and granddaughter it is very endearing.

Its on Tik Tok so reporting it wont achieve anything

My mum has dementia
I'm totally expecting to get it as well
I would be so upset if my relatives did this to me
Hugely hugely upset

I felt very upset seeing the photos of the lady from coronation street
Was it bet linch
That made me feel very uncomfortable,we should of been left with the image of bet in her hay day .
Julie Goodyear ,that was her name ..bet in corrie

I dont think its mych different to people (non influencers) sharing pics and videos of toddlers or babies who cant consent.

You can see the love, theyre educational too and while DGD may be leaving a camera in the room she is reviewing the items before uploading them. So unless I saw something I thought was cruel or undignified for the DGM I would be ok with it and trust that the family and DGD in particular to use their judgment to celebrate their loved one and inform others who face this horrible disease

It's not just elderly people with dementia. The internet is overrun with videos of young babies/toddlers and pets in clearly staged 'amusing' situations. Their parents monetise their own kids for no other reason than to get clicks, likes, attention and 💰💰💰. Not a thought given for their child's privacy, comfort or right to live an ordinary life that isn't just a series of staged shots.

Nor is this necessarily a modern phenomenon. I remember bloody Jeremy Beadle and that execrable Candid Camera show of his when I was a kid - always seemed quite heavy on the highly staged 'accidents' and pranking of little kids and elderly people.

She may have given pre-emptive informed consent? I would.

I'm so glad that someone has raised this. I feel the same OP. It's exploitation.

I really hope so

No, I wouldn't watch this. I feel the same about content featuring children, who imo don't have capacity to give informed consent.

I haven’t seen anything like this but agree that it sounds very exploitative.

I think there is a lot of exploitation of children too. My least favourite type is when young children are tricked into a public reunion with parents they haven’t seen for a long time - eg those who have been away serving in the armed forces. There is often some sort of public ceremony and someone announces that a particular child’s parent can’t be there and then they come in and surprise their child.

The child invariably bursts into tears and the reunion is very heartwarming, but I can never help thinking that those should be private moments not public ones.

Even if this lady gave consent when she had her faculties, years ago, she would never have known how big any videos were to become.

7ish years ago tik tok and you tube were not the platforms they are now. This lady couldn't have known as her dementia progressed 1000s upon 1000s of people across the world will be watching her decline and she can not withdraw any consent that she first gave and change her mind. She can't pick and choose what gets posted.

She didn't consent that in 2025 1000s of people can view videos of her at the drop of a hat because around the time she was first diagnosed youtube videos of her weren't viral and she never knew they would become viral.

So any consent she originally gave was consent for something else entirely. I doubt very much she said;

'I am happy for these videos to continue to be made of me when they hit 50,000k followers on YouTube and a million followers on tiktok.'

She couldn't have known how big they were to become.

It's exploitation of a vulnerable person in my opinion, and from what I know of the law.

Especially so if anyone else is making monetary gains from the elderly women. In the UK, the person who is the legal guardian of the vulnerable person could be charged.