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.

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.

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.

Horrible and exploitative.

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.

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.

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.

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.

These videos are posted for views, not to raise awareness. We know what dementia is, what it can do to people, it’s hardly a little known condition.

Exploiting vulnerable adults is vile.

This is awful, can you report it to the moderators

I wouldn't know how. But this channel has thousands of views and positive comments so I don't know what good it would do?

There are other youtube grandma and granddaughter 'duos' in the past where the grandma's have sadly passed away now but from my understanding these grandma's understood they were being filmed and consented. They have appeared on programmes like This morning. I'm wondering if This morning have never featured this story is because it's very wrong as the views are there on the you tube channels

It's totally unethical and people who do it are either unbelievably thick or greedy for views and totally uncaring. Platforms shouldn't allow it. I hate exploitation of anyone.

It's reassuring to see that my doubts are not unfounded. In the past when I have voiced my concerns I have been shot down by the granddaughter or other viewers and been told I'm all sorts of things for bringing it to light.

"Raising awareness" seems to be the catch-all excuse for some pretty unethical stuff.

I feel the same way about docuseries about the emergency services - is it really ok to film someone at the worst time of their life, even if they later consent to it being broadcast? Just the filming of them by someone who doesn't strictly need to be there is intrusive IMO.

I wouldn't want hundreds/thousands of strangers to see me if I had dementia.

I think raising awareness is a good thing and she is the best person to know what her grandmother would be comfortable with.

I have a page for my son which was started when he was in critical condition and unexpected to survive to give updates to friends and family which has turned into sepsis awareness, cancer awareness and updates on his recovery.

Repulsive.

And there is zero need to “raise awareness” of dementia unless you’re living under a rock. I would posit that these days most families will have experience of someone with dementia. In my family it’s standing at 3, and via friends it’s higher.

Stop watching them.

I feel the same about videos where the carer of someone with SN posts videos of a child or someone else unable to consent.

While I suspect that many watch simply because it’s heartwarming to see people care and love someone with dementia or whatever, it is unethical even if the money made all went to the subject of the videos.

Trend is online speak for what people are talking about or copying a popular format of video. Leaving grandma alone for a minute and listening to what she says is harmless (shouldn’t be shared online imo) but something like smashing a cake in someone’s face is cruel and dangerous if there’s dowels in the cake.

Please stop giving them your views OP. If no-one was watching she wouldn't be posting, it's for views, not to inform.

Whenever people start banging on about "raising awareness" they almost always mean raising their own profile and becoming known for "raising awareness" rather than actually making people more aware of the condition. It's not that difficult to make people more aware of these sort of conditions without doing this sort of thing. There are plenty of videos by psychmed for example that raise awareness of tons of MH conditions without filming vulnerable people at their worst when they're not in a state to consent.

Feel the same. If a video like that pops up on my TikTok I scroll on straight away I don’t want to give them any engagement. It’s so wrong.

Is your son now OK?

This lady will never be better and she can never withdraw consent ir change her mind about whats been uploaded or going to be uploaded. The family may feel like they know her but the lady herself didn't have a crystal ball and knew she was going to behave the way she is or say the things she says as her diagnosis of dementia has progressed.

There are videos of her very distressed and angry and the camera is so close to her face that its very emotional and invasive to watch. These 'angry' videos are always the ones with the most views by far.

I really really disagree with this type of thing. It's exploitative and IMO very deeply morally wrong. I can't see how it raises awareness either, it only shows one woman's experience, I'm sure everyone is different. Shame on that young woman.

I agree you shouldn't watch them OP, if less people watch she will stop making them. And probably go off to only fans or start exploiting her pets or whatever..

I used ti be mental health nurse and worked in Dementia care for a number of years dementia is a catch all term for loss of memory and there are many different types of Dementia ,and it presents differently in different people even people with one of the more common types such as Alzheimers ,csn range from being confused but mainly happy in their own little bubble ,to being tormented and distressed for most of the time I don't think the general public do know all about Dementia.

I think if they had discussed filming and the woman agreed to be filmed once she’d lost capacity, she probably agreed to leave it up to the filmer’s judgement, ethics and compassion when to film or not.

As useful as the videos might be to people who are heading down that path and their carers, it makes me feel very uncomfortable. I think chronicling cancer would be seen very differently yet they are both diseases.

Is it ,there's a very good documentary on Netflix called Lion in the house about children with Cancer and the realities of it
Three of the five children don't survive and it shows them dying and in their coffins I'm not sure it's much difference in terms of consent.