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

This is highly nuanced. I think some people become very active advocates for their disease before it progresses and genuinely WANT it all to be documented online to promote research, etc…. If this is the case, then there would be documented evidence that this was their own wish, they were not coerced, and any boundaries they set are respected. I also believe that the media to be shared should be obtained via family or professional videographers, and never medical staff or paid caregivers.
If the dementia patient was a private person, with no social media or community education agenda, then I feel that it’s highly unethical to use footage of them in this way.
Dementia is cruel, and the patient’s own personal concept of dignity should be preserved at all costs.

Dan Salinger is an American guy who posts regularly on YouTube about life with his dad’s dementia. I think the reason is to educate and help support those who are also caring for someone at home - his Dad lives with them and Dan retired early to look after him.

No, I don’t agree with it, and would never have allowed it.

In later stages my DM was too far gone to be aware or to care about anything, but I cared about her dignity. I once told an aunt who was over from Canada and wanted to visit her, that seeing strangers (since she wouldn’t recognise her) would distress her.

Which was a complete lie, but I knew my DM’s former self would have hated that sister (they’d never really got on anyway) to see her like that.

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.

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

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.

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

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

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

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

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.”

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.

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.

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.

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 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.

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.

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 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.

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.

@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

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.