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?

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.

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.

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.