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?

I wouldn't want to be filmed, no. I would want to be cared for with privacy and as much dignity as possible. And I would like to be remembered as how I was before I got dementia.

That's exactly how I feel about it. It is such a wicked disease that I personally don't want my own dc seeing me become the person my poor mum has, it's heartbreaking and the thought of plastering images of her on SM is so far beyond my idea of good care-giving.

You are not wrong. I am always astonished by what people think it's appropriate to post online ... from children sitting on potties, to women crying at the camera often parked up in cars, to grossly unattractive people with gym leggings up their arse practically squatting over their phones, to people without capacity including the very elderly. I can only hope that this "fad" will fade away and one day we will scratch our heads and say "how come this was ever acceptable?"

I've always thought the same. So unfair and wrong. Wishing you and your mum all the best. It's a horrible disease 💐

I don't agree with that either.

No, because that individual cannot understand the significance of their actions or give informed consent.

For the education of medical staff is different, but to air it publicly on social media, I don't see how that can be right.

I do notice that a lot of the content creators are often the grandchildren of these sufferers, they have obviously grown up with the internet and SM and probably don't see it with the eyes that someone older like myself does but where are their parents, are they agreeing to this? I would never give my 17 or 20 year old permission to post images or videos of their GM online.

No, it's disgusting.
You can get the message across about dementia without having to post videos of someone without their consent.

I agree, it's awful. I saw an image of Julie Goodyear (Bet Lynch from Corrie) who apparently has advanced dementia, and is now quite toothless - as she was someone who was known for being glamorous, I can only imagine the horror she would feel if she were to understand that the whole world can see her as she is now. It's just unfair.

Ditto with kids with disabilities, there are quite a few parents on TikTok who film them all the time, one man (a single dad I think) with a daughter with quite a severe learning disability (needed to wear a safety helmet etc) was recently complaining that he had been told not to film her as she couldn't consent properly. It's so awful to do something like this for likes, views (and money). What a world.

I do think that in some of these cases they’re doing a lot of the care alone. Still knocks me sick though. There’s absolutely no way to consent to this type of thing being put online.

I completely agree with your sentiments, it feels like dementia patients are being exploited, even if that is not the intention when in actual fact we should be protecting and safeguarding them.

My mum has sadly had dementia for 6 years and I know she would be mortified if she thought I was posting videos/photos of her on the internet for everyone to see and like the poster has said above, some sicko finding her highly amusing.

There is enough information out there already for everyone to get an idea as to what the realities are of having dementia, what the deterioration looks like, how people become undignified, their whole personality changing that you do not recognise the person they have become.

The sadness and anxiety for their loved ones having to witness this change in them. Before my mum went into residential care, I would go everyday to bath her, to clean up her mess, not knowing if that night she would decide to go out for a walk at 2am, getting a call from the police saying she had been found wandering in just her dressing gown. Every day I grieve for my mum even though she has not yet died, it is only until you experience dementia first hand you realise how heart breaking it is.

Thankfully my mum is safe, well cared for and most likely oblivious to her condition, living in her own little world and I take that as a blessing.
My heart goes out to everyone who is affected by the awful disease.

I think it's totally wrong. I hope the OP is coping, it's horrendous when a loved parent has dementia of any sort. My mum suffered for the last few years of her life, there is no way, even though she looked beautiful to me, would I have exploited her online.

I could never understand the posters who though it was OK when Julie Goodyear's husband allowed pics of her to be shown ....cruel and horrible imo.

Completely agree re Julie Goodyear's husband, part of me wonders whether he was aiming for public sympathy for what he was dealing with, which makes it doubly awful. Sorry to hear about your mum.

I think it’s monstrous - and since they can’t consent don’t see how this does not fall foul of data protection law governing sensitive personal data.

i have tried to draw up a watertight advance directive stating that if I develop dementia I do not consent to receiving any medical treatment (whether for the dementia or otherwise, eg statins or other life lengthening medication). I am terrified by the idea I may be given eg heart or blood pressure medication to keep me alive with dementia. The idea of being exhibited like a dying animal at the zoo, too🤯! Maybe I need to update the advance directive to refuse this too!

I think it’s disrespectful and thoughtless. So too are Facebook sites from care agencies with pics about doing a jigsaw with X or making a sandwich for X. Usually not stimulating activities for the client but ‘virtue signalling’ for the carer. Family may have given permission but I still think it’s unnecessary.

I really feel for you, it's such a wicked disease and it affects everyone involved.

It won't be long before our mum will need to go into a care home.

I honestly thought Jess Nan had passed away. I don’t know where I read it. So I’ve just popped into her TikTok page and so sad to see how she is now. Not sure I liked the post of her bed bathing her Nan while advertising the products to do so. Although the products look like a fab idea as they are no rinse. How said to see her nan like this now 😓 I’ve never followed her because I didn’t like the way she spoke to her nan sometimes but I’m sure she absolutely loves her and being young probably thinks this is ok to film this part of her nans life 😪

I agree it’s completely wrong. They can’t consent to this and it’s a personal and private thing that someone is going through when they are diagnosed with an illness like that. It’s just not appropriate at all.

I'm going to do the same.

Fuck me, do people do this?? No I think it’s very obviously both legally and morally wrong. I guess I knew about children being posted and knew that was wrong too. Feels like people need a mental reset about just how weird and boundary-crossing social media can make you.

Yes, it's very sad to see. If it comes up on my For You I scroll past, I can not eat h any of it.

Their way of coping? Their way of getting clicks more like.

There is an absolute mania for filming and photographing people in general, often without their consent. A lot of it is OTT/intrusive.

Some of which will probably earn them money. Shameful.