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.

Whereabouts are they? A report can be made to the local authority safeguarding team if the area is known.

No one knows. They obviously protect their own locations etc. Data protection, consent an all that 🙄

Shes posted today that shes setting up a separate account now with just videos of her & her Grandma

Its actually very easy to find out where she is. She has a business page with her salons address on it

Dm me, I'll report her.

@smallglassbottle Could you DM me first please. This isnt my main id and DMs are only done via your main id and I dont want them connected

As someone who lives with Alzheimer’s 24/7 (husband, not me) I think it sounds extremely tacky, invasive and self-seeking.

I admit I haven’t seen the videos but would ask their purpose. If they are to ‘raise awareness’ then, of what ? There are more facets to dementia than there are grains of sand.

If anyone, who needs to know, isn’t aware of Dementia nowadays they must be on a different planet.

I know quite a few Carers who feel the Ads from Alzheimer Society are simplistic, too lovey-dovey fuzzy, don’t show the range of issues, and are just aimed at money raising; and they are ‘professionally’ produced.

I’m drained, angry, disillusioned and therefore biased but no matter what my feelings toward what is left of my husband are, I would not exploit him in this way.

Salon? Are you sure this is the correct girl? There are two people with the same names posting content. It seems one of the girls nan did have capacity to consent to feature on films and had now passed away.

It's the other vlogger who's nan doesn't understand.

👍🏻 done

Can you check with kinnedar before I contact safeguarding? Don't want to get the wrong person.

I think the Consent issue is interesting and probably complicated. I wonder if it’s a bit like Wills which are void after, say, marriage, so maybe Consent decisions would be negated by the activation of an LPoA ?

I really don’t know but I’d be interested to find out. I still can’t decide whether to try and find these videos online.

Hi, which person are you thinking this is? There are two posters, very different ethics.

One nan can consent
One nan can't.

Both granddaughters have the same name.

I have her blocked for a few reasons, consent being one.

However it's very difficult in some situations, for example parents posting for help for their child, I've seen some amazing things happen, surgeons helping out, money being raised, equipment being provided, treatments being given and lives being improved, even saved.

To me there's a massive difference between posting for help, and posting for views and gifts (and attention).

No, no and no! That’s awful.

Yes its the same person. Theres a link on her page to her salon.

Shes the one with the grandma who has just turned 90 and has no idea her daughter has died

Id be surprised at there being 2 with the same name its not a common name

But that aside the Grandma of this one is definitely alive & well

What I know is that this granddaughter tried to break into the vlogging platform sometime ago. (I've seen comments mentioning this) and it did not work out.

Sometime later she pops up again with these videos claiming to raise awareness of dementia, featuring her nan, who is in the late stages and bedbound. She has a PO box for people to send cards and gifts to celebrate the nans birthday. Make of that what you will.

Alongside the 'nan content' as she calls them, she also posts personal lifestyle vlogs. She showcases shopping hauls, weekend trips away, skin care routines, movie nights. You get the picture. Bog standard social medial vlogging content.

She also has began posting videos of her singing songs which is pretty innocent but to me, points to a back up plan when nan is no longer with us and she still needs content, views and clicks.

It could all be so innocent and as a way for this girl to document and store memories and as she explains, to help with her mental health but like previously discussed, somethings off.

This nans daughters hasn't just died. She's alive and well. She just chooses not to feature in the videos. (SERIOUSLY) You hear the voice, see the hands but NEVER the face.

The one im referring to has a Grandma with dementia. She's 90. Her daughter (the Tiktokers) mother died last year and Grandma doesn't know. She posts a lot of takeaway videos with her partner who she calls Mr (surname) and ofcourse lots of content with Grandma, who's about to get her own page

Is this not the one youre talking about

Sounds like a different account then but with the same content. Grandma being used for content

No I'm not talking about this one. I've never heard of this family.

It just shows though that it's going to become more and more common and the norm. I wouldnt want this for me.

I put my big girl pants on and watched a few, one of which was where a girl was banging on about running a 'marathon' of 16 k. Uh ?
Please God let me die before anyone starts talking to me in that bloody sing song voice.
Don't know if I got the right vlogger but I felt dirty after watching a few.

Yes it's the correct video.

I don't get the 6k marathon either. At all.

Quite depressing that more than one person fits the description so well

Thanks, I thought I'd got the right one.
As I said in a previous post, I'd be interested to know what her purpose is.
Definitely felt dirty and squirmy after watching, and would not put my husband through this.

It's abuse imo. My mil had dementia and this would be the last thing I'd consider. I protected her more than anything.
The world's gone mad. So many attention seeking bastards.