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?

‘the post of her bed bathing her Nan while advertising the products to do so’

FUCKING NORA

I do think for many young people the are being raised with social media and it's just part of their every day lives. They are grow up not seeing anything wrong with it, I genuinely think they are blind to complete strangers happily viewing and commenting on the gradual demise of once vibrant family loved ones. They just see an old empty vessel, not a person who deserves privacy and respect. It probably won't be long before we are videoing people dying and plastering it on SM, that will be one the new norm 😞

I think it's disrespectful, I wouldn't want to be posted on SM in that condition.

Mind you I think it's worse that people are left in that condition with no alternative. I just hope the law is changed before I get to that stage.

I suppose I’m a bit more aware as I’m both old and work in a job where I go into people’s homes who have various serious problems which very often involve losing mental capacity. We also do our best to use digital communication and videoing where it benefits the patient and their family - it can be great to film someone’s exercises for them to practice, or to do video call sessions, etc etc. My work’s social media policy is of course draconian (I approve). We shouldn’t even post something like ‘had a tough day at work’ in case someone we are seeing or their family see it and connect it to our visit. The idea of posting a ‘heartwarming’ clip of one of my patients for clicks/‘awareness’… [mental explosion] and even more so a beloved relative like my mum who is extremely vulnerable.

Completely agree with you. It's completely selfish behaviour. Same with people who use their children as social media fodder.

If the person doesn't have the capacity to consent to it, you don't post it.

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.
Im getting very confused.

Are you all talking about Jess and Norma? Norma died in June aged 91 and the videos were respectful and funny and Norma definitely had her wits about her, or is there another Jess?

There’s another one.

Jess is the granddaughter, not sure what the grandmothers name is but she is still alive and the gd is still posting.

There’s another one.
Thank you, I haven't seen the one being talked about on here. I used to like watching Jess and Norma, they had a lovely bond and Norma was funny and honest!

Indeed. Why would their parent allow that (if they know, of course.

If The person in question does not have capacity then they can not give consent put simply, so no, it's not appropriate. I would never gave done this to my Dad whom we lost to dementia

There are two Jess’. There’s the one whose Nan passed away (Norma) and the one whose Nan is still alive and has dementia.

Whether advertising the bed bath products is ethical I think it’s important to highlight that she wasn’t actually giving her nan a bed bath, she was clearly fully clothed and under bed covers and was simulating a wash on her arms and hands. She did not film a bed bath.

I

I think it is absolutely grim and unboundaried. We need a serious conversation in society about what is appropriate to film and share and what is not. These are often the same people who will share videos of their young children having 'hilarious tantrums' with no concern for how that child will feel in later years. They probably feel like it's safer with the very elderly because they won't be there to sue them in years to come.

People are losing their grip on what is appropriate and what isn't.

Totally agree it's inappropriate. I boggle at some of the videos that pop up on instagram reels. There was a video of an elderly lady being admitted into hospital, clearly in a lot of distress and very ill and I just couldn't believe that her family thought that was appropriate, the voice over was also describing her private medical details.

Anyone who can't consent shouldn't have their life documented in this way.

I manage comms in a hospital trust and we’d never use images of any patient without capacity. We have to be confident the patient fully understands what content we are creating and how it’ll be used. Any doubt at all and we don’t use it.

To clarify @TeenLifeMum it was a family member that was posting the video, not a member of the hospital staff.

YANBU. I’m sorry your mum has this awful disease OP. You sound like a really wonderful daughter 💐

Totally agree - TikTok is terrible for it and if it comes up on my algorithm I call all it out. The same for those with profound learning disabilities. If they can’t consent they shouldn’t be filmed

It is absolutely not okay. As has been said, these are vulnerable people and they cannot consent.

My mother had dementia for ten years. The care home never filmed her, but towards the end of her life they did occasionally take photographs of her - purely to send to me. I am sure it was meant with kindness. But I could see during my visits what dementia had done to her and did not want a photographic record of it. I deleted the photos because that is not how I want to remember her.

I get that but I think those principles should apply and are a good guide. My cousin once posted a photo of our nan in hospital in her night dress with no teeth in. She was a lovely lady but very proud and would have been horrified to know that was shared with hundreds of strangers on fb. Some people have no ethical compass. Surely they’d want to be remembered for the person they were. I’m very protective of the elderly.

The right, or the interest, of total strangers in seeing a ‘lovely bond’ or a ‘respectful’ video making it clear that my relative needs total personal care from me or others, whether or not an area of the body or a face is shown, doesn’t trump the principle of consent.

Totally agree OP.
Even privately i never took any pictures of mum when she went sown hill with her Alzheimer's. She would have been mortified at how she looked if she had been in her right mind, and it is not the lasting image of mum that i want in my mind ( hard enough to separate without photo / video )
I want my lasting images to be of mum, not of her disease. And even hated it if she appeared in the background of the nursing home photos

Actually I think dementia does need awareness raised. But i don't think Facebook with identifiable individuals is the place.

Op says herself she thought it was just a bit of memory loss. Its not its strips people of their dignity. Forgetting how to eat, how to use a toilet, becoming incontinent, the fear, asking for family who are long gone, the 24hr care required its much more than just forgetting stuff.

All that undignified stuff is hidden away in care homes out of sight.

I agree that dementia is poorly understood amongst people who have not encountered it themselves. It is often thought of (and portrayed on TV) as someone being dotty and forgetful.

But I am not sure why awareness needs to be raised really? When you have to deal with it, you find out what dementia really means. If you never encounter it there is no need to know. It would be like learning all about the progress of heart failure, or pancreatic cancer - unnecessary unless you are dealing with it.

If you do want information for any reason, there are plenty of online resources.

its very uncomfortable, making money out of people who can’t properly consent to it. Privacy, dignity should be the focus of caring TikTok is the exact opposite of that