Is it appropriate to post videos on social media of people with advanced dementia?

[Strawberryflavoureddogbiscuits]

My dear mum has advanced Alzheimer's, I help care for her and go out of my way to ensure she is protected and safe especially now she is classed as a vulnerable adult, which she most certainly is.

Over the years I have taken a vested interest in dementia - the care, treatment and research etc as it was something I had little knowledge of before it came knocking on our door. Like many, I suppose I was quite naive about dementia in general believing it was simply a bit of memory loss in older age (if only that were the case), so I try to read as much as I can and educated myself on the subject.

However, I am quite uncomfortable about the role social media has played over the last few years regarding this illness. I appreciate that we need as much education on diseases as possible and people do need to understand the impact this awful disease has on sufferers and their loved ones but I can't help but feel very uneasy with the amount of younger people posting endless pictures and videos of their LO's and their daily struggles. These poor people have lost all capacity, most of the time they have no idea they are being filmed and less knowledge that their images are uploaded daily/weekly to millions of strangers over the world. I even see it on the FB dementia support groups, of all places.

I personally, don't believe it is morally right to do this. My mum loved to look after herself, she always wore make up and dressed in lovely clothing with matching jewellery etc. She is now 82 but sadly looks 10 years older, she is bent over with osteoporosis, she is double incontinent, doesn't care what she wears or how she looks (although we try our best to keep her looking lovely). Due to her breast cancer treatment she has a beard which is a nightmare to control as she screams when we try to shave her. She has little dignity left in her life now and I could not imagine adding to that by plastering images and videos online of her daily struggles.

I know these people probably mean well but it breaks my heart seeing old (and sadly not so old) people laying in care home beds with no teeth, no energy or zest for life and talking as though they were 4 year old children whilst their kids/grandchildren uploading this image onto their Tik Tok accounts and everyone commenting how lovely dear Nan is with comments like 'Oh bless her little heart' or 'Oh, how lovely to see you spoon feeding your dear old Nan, Jess you do such a wonderful job'. It just makes me feel very uncomfortable.

Does anyone else agree?

Its not something I would do but it could be their way of coping. Maybe its also a way of sharing to wider family so they can see their loved one. I'm in dementia care groups and have never seen any videos just people sharing their struggles. I can't say it bothers me.

No. It isn't ok to post videos of people not able to content.

I personally wouldn’t post stuff online. It does make me feel uncomfortable and it’s not something I would watch. That said we should normalise caring for those unable to care for themselves.

I think people are embarrassed by the indignity of it all. It’s pretty horrific to imagine being doubly incontinent, spoon fed , non verbal, immobile. I think for dementia sufferers many of them are unaware once they get to that point and they aren’t ashamed in the same way that a baby is unashamed of it’s latest poonami they just need tlc. In many ways it’s like a second childhood. How do we normalise this care if people are tucked away and unseen?

So awareness is important, respect snd privacy is important I suppose it’s a question of how you balance these competing needs.

I agree with you. These people do not have capacity to consent. My grandfather would not have, nor would I ever have thought to share the humiliations
of his later days to a baying public. Feels akin to Bedlam.

It is horribly disrespectful

Sending all good wishes to you and your poor mum

YANBU. It’s the same as the influencers that post everything about their children for attention. It’s exploitation

Hmm.'Jess' was different though, (if she is the one you i think you referred to there) it was both her and her grandma that used to post & she was at home. Social media gave her grandma a wonderful and completely new life in her last yrs and it was beautiful to watch. Of course, it could be someone else you meant.

No one should post videos of anyone except themselves. Particularly if the people involved can't give informed consent.

No I think it’s a horrendous thing to do. Even the care homes are at it. When my Nanna moved into hers I was explicit that she not be filmed and uploaded to the care home Facebook page.

I don’t think anyone should be on social media without their consent - not people with dementia, not children, I get irritated when a friend posts a photo of us on a night out without asking me first. Some people just want to share every aspect of life but to do that for others is really disrespectful. Everyone is entitled to privacy and dignity.

I think people that can’t consent shouldn’t be on social media - children, vulnerable adults. I’m also wary of social media anyway, there is a lot of bullshit on social media. I know firsthand how families can use social media to paint themselves as suffering over a relatives diagnosis or death when they weren’t close at all and did nothing to help.

However, I can’t deny that social media and sharing these journeys (not just dementia but cancer, SEN etc.) has brought awareness and understanding to these areas. Video hits in a way that writing just doesn’t. Some people can obviously writing a beautifully moving and detailed post but most of us aren’t blessed with that skill.

I don’t know how you raise awareness, understanding and drive research without seeing firsthand because it is the most compelling way to tell a story. Where is the line drawn on privacy but raising awareness? Is it OK not to film them but for you to film yourself saying how hard it is now your mum is so far away from the woman she once was and listing why? It doesn’t feel less personal to share the details on MN and probably still shares details your mum wouldn’t want told (not attacking this post as I now this anonymous but if you were to take to social media). You can’t just write everything anonymously via forums either because it doesn’t create that connection and it could easily be argued it’s fake.

I think we need better regulation of social media and I would argue if someone is profiting from a child or vulnerable adult being featured on social media, that income should go to the child or vulnerable person, or to a non-profit working with those with the same diagnosis.

I agree - my mum had dementia, and I would never have posted any pictures/videos of her on Facebook etc. The most we did was put a picture of her on our private WhatsApp group at Christmas- looking smartly dressed and smiling, so her grandchildren could see her as they lived too far away to visit regularly.

Its absolutely not ok and I dont believe for one minute its done to raise awareness, its for the care emoji's and "heartbreaking bbz r u ok?" comments.

Its disgusting (and I rarely say that).

I think it's appalling. I can't believe that there's anyone here who would want to be shown on social media art their most vulnerable time of their life.

I want to be remembered for the person I am, and have been all my adult life so far, and if I get dementia I'm even unsure that I'd want my own children to watch me lose my mind that way. I really struggle to remember my wonderful MIL as herself, after eight years of watching her decline.

I think it's cruel and disrespectful to post videos publicly without their consent.

But was she able to fully give informed consent? Did Jess explain that if she ever lost capacity she’d continue posting? Is it now in her best interests to continue posting?

No, obviously. They can’t consent. POA doesn’t mean carte Blanche to paste some of their most vulnerable episodes all over the bloody internet.

I do understand that awareness needs to be brought forward to the general public and we certainly don't want to re-live days where anyone with any kind of disability is shoved away in institutions, away from the public eye but every time one of these clips comes up on my For You page the first thing that comes to my mind is 'Would that person have wanted this if they had capacity?'. And I don't believe they completely lose their self-awareness. It is still in there, somewhere. My mum is in advanced stages yet still tried to pull her nighty down with dignity when a male nurse came to change her during a recently in hospital stay. I know my mum and I know she would have hated strangers to see her like she is now and I will keep that in mine even when she is in the very last stages of the disease.

If someone states at the very beginning of their diagnosis and journey they are happy to be filmed and displayed on the internet for educational (or entertainment) purposes that is one thing but realistically, how many people are going to agree to that?

Dementia doesn’t need awareness raised. We know what it is. Posting vulnerable people under the guise of ‘raising awareness’ (see also autistic children) is fucking vile.

I agree because you can be certain that some dickish will be laughing at them.

It does feel like exploitation. When I am not caring for my mum, my 'normal' job is a PA for disabled people. I could not imagine their LO's plastering images of them on SM. It just feels wrong.

This. I would not be so disrespectful to anyone I loved.

I completely agree but people post their kids all the time.

Sickos, not dickish. Predictive text. Though guess that applies equally.

Equally wrong.

But at what point do you look at your loved one and say it's time to call it a day?

Regardless of how her grandmother loved it all at the beginning she is now a frail little lady who thinks she is a little girl. My mum has gone the same way, she sits all day chewing on crayons, even if she had loved being filmed for IG or Tik Tok at the beginning of her disease it's a completely different scenario now surely? It would sit very uncomfortably with me I 'm afraid.