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 had thought it was simply memory loss, prior to mum's diagnosis. Sadly I'm now all too aware of the evils which come from such a hideous diagnosis.

The struggles relating to the disease and the care of people with all forms of dementia need to be brought to the wider public's eye but it still needs to be done with complete dignity and that can't possibly be done on SM posts showing a dementia patient who is lacking complete capacity, we have no idea if they would wish for their faces or struggles to be shown. I can't imagine any decent and caring loved one would do that to any family member.

I do think there needs to be awareness. Had I known what was coming for us when mum was first diagnosed I may not need counselling now.

Not sure exactly what can be done. Maybe it could be shown on SM but anonymously with sufferers identity block out? I really don't know. It's such a horrible disease.

Oh I think the same rules should also apply, I was just clarifying that it wasn’t a video that has the subject’s consent from anyone. I should have reported it, but I just scrolled on quickly as I didn’t want to see it, because watching it felt like an intrusion.

No it isn’t. It sickening to use someone else’s difficulties for clicks, even in the name of education and there are a couple of people on social media who have made a following of exploiting vulnerable elderly or ill people. It’s horrible. To be fair I feel the same about those who flaunt their kids or anybody without the capacity to give informed consent. It’s horrible.

@Strawberryflavoureddogbiscuits It is very difficult. But I would not have wanted my mother used on SM for 'education purposes' even with her identity concealed.

I also think raising awareness is difficult because there are different types of dementia which involve very different behaviours. There are commonalities of course, but it is an unpredictable disease.

Last year the Alzheimers Society ran a TV ad called The Long Goodbye, I don't know if you saw it? I thought it was well done and actually really 'mild'. But it had a lot of criticism, and was reported to the ASA as 'distressing and offensive'. Some people don't want to go anywhere near the reality.

https://journalofdementiacare.co.uk/asa-ruling-on-alzheimers-societys-ad

I'm so sorry you are going through this with your mum...it truly is like seeing someone die months or years before they do....and everyone is individual, so there is no one fix for all.
The only thing I can say is...it will pass, and when your mother is at peace, you will know you have done the best for her.

I do get that it’s really difficult to feel strongly that ‘people need to know’ and then to see things like that advert where a man doesn’t recognise his daughter and there’s an emotional moment about not liking nuts in chocolate. I don’t think that was bad exactly - the idea of people not being able to recognise their own children is horrible and that is educational. But I think people were upset because it still felt like a whitewash of the reality.

To me this is what fiction can sometimes do - but then I haven’t seen The Father because I can’t face it, and I found Still Alice quite frustrating, and people telling me that it was good upset me because I wanted to say ‘no, it doesn’t capture it’ and maybe nothing can. I’m not sure anyone would pay to watch a film that really showed what caring for someone with dementia is like.

The thing is though these influencers aren’t sharing for “awareness” they want attention and money. If they were doing it for awareness all money from their videos would be donated to charity, and done publicly.

I've seen The Father, I thought it was brilliant. Both my mother and MIL had dementia at the time and I thought it represented it very well (as much as any film can, they never go there with the 'worst' bits). Both my mother and MIL have since died.

I agree the chocolate/nuts ad is whitewashy. The Long Goodbye ad was apparently was objected to because it was too hard hitting with the association of dementia with death. It's hard to set the right tone, either it's twee and diluted, or based on a reality many don't want to see.

I switch channels whenever a dementia advert comes on. The one of the woman in the early stages that's being shown at the moment is freaking out everyone I know of my age.

I'm not going to feel bad about about that. I know only too well what dementia does to someone after watching what it did to my MIL for over a decade, and what it did (worse things) to some of the other residents at her care home.

Definitely not,not everything has to be put online.
How the fuck did we manage before SM .
It was private between family and close friends only.
Not every moment needs digital recording.

I can't watch the latest Alzheimer's Society's TV ad. It usually comes on when I'm sitting with mum, the bit when she says she's worried that she'll soon need help doing up her shirt or how it'll affect her daughter always has me in tears, it's way too close to the bone for us atm.

I agree that awareness needs raised but I don't know how. But its certainly not the job for influencers on SM.

Maybe TV could do some decent Panorama type programme, changing names / identities, and blurring faces.

BTW I believe dementia care should be under the NHS, it shouldn't be down to individuals to fund it nor should it be private businesses.

There does need to be a hell of a lot more awareness of how to communicate with someone with dementia. Although I am conflicted with the ethics, Jess does model really good communicate skills, especially when her Nan calls her Mummy or asks where her dad is

I have personal and professional experience of caring for people with dementia and there is still awful practice from people who should know better. A lady in an NHS older adult ward kept asking for her husband who had passed away, the answer was for staff to put a sign up in her line of sight that said ‘Fred’ died in 2020, to keep reminding her so she would stop calling out. This is not isolated and the more awareness of how to manage it, the better.

Norma, Jess' grandma was fully compos mentis. They videoed everything together and gained thousands of followers. She was a well beloved gran known by her army of followers and was invited to many social events off their social media activities. She sadly passed away in June this yr.

Norma didn’t have dementia. She was a healthy elderly woman who passed away peacefully at 91. That’s why I don’t think Jess and her grandma fall into the category the OP was referring to. Norma was simply living her everyday life, and Jess was sharing that. If we start questioning every video for future consent issues in case someone becomes ill or loses capacity, we’d have to scrutinise all content involving anyone.”

The OP is talking about another Jess who shares videos with her Nan who has dementia. I think this Nan is called Jean?

@NerrSnerr Okay, that's a different gran. Thanks.

I hate seeing these videos abs think it is wrong to post such private things people can't consent to. I think it's exploitative

I agree 100%
It's sickening- robbing people of every last scrap of dignity

The NHS are beyond dreadful with regards to dementia care.

Mum was in hospital for a month this summer. Her treatment was woefully inadequate. Thanks to their absolute unwillingness to understand mum's dementia she is now double incontinent. She went in fully continent with no toileting issues at all but of course they blamed the dementia for everything and nothing on their incompetence.

It amazed me that over half the women in that bay had dementia but it was left to the family to do so much of the care and communication. One nurse told me mum was so lucky to have two daughters to look out for her and many aren't that fortunate. I will no longer allow mum to stay in hospital unless it is absolutely necessary and even that will be at a push.

I don't know who Norma and Jess are, they appear to be a different grandmother/granddaughter Tik Tok account to the ones I'm referring to.

I agree with you, @Strawberryflavoureddogbiscuits

They are not compos mentis so can't give consent. These people will be forever remembered for their infirmity, not their former vitality.

There are better and less exploitative ways of coping with alzheimers in a relative. They don't get you the likes or launch your SM career for you though.

This^
I got consent from my DM before posting a photo of her leg on here (medical issue).

I agree it’s wrong. I run a business making and selling products primarily for adults with dementia and learning disabilities. It’s incredibly tricky ethically making promotional materials because I don’t feel comfortable posting (even with family consent) pictures of my audience online. Consequently my marketing is very tricky. But ethically I don’t see how it is possible to make said content.