Charles Bonnet syndrome- anyone come across this?

[EasterRose24]

An elderly person know has been diagnosed with this condition.
She sees people, patterns and large cuddly toys. She's been told there is no known cure.

Has anyone else got experience of this? I'm looking for suggestions to help her manage the psychological impact. It's only been a few days since it started and she's already struggling emotionally. She can't read, watch TV or have anything close to a normal life because of it. She's understandably very upset and emotional which is so unlike her 😩

I'd never heard of this, your poor friend/relative - it sounds tough!! The NHS page on it has some suggestions like moving your eyes around and particular lighting, but also mentions that talking therapy can help too and to talk to your GP if it's distressing - which it certainly sounds like it is.

Down the bottom of that link there are links to specific charities which help with Charles Bonnet syndrome as well.

I hope something helps, it must be scary!

The Macular Society run a CBS support group

https://www.macularsociety.org/macular-disease/macular-conditions/charles-bonnet-syndrome/#support

Esme’s Umbrella also offers support

https://charlesbonnetsyndrome.uk/what-we-do/

How awful. This website has some simple suggestions. It also says it can resolve spontaneously in 12-18 months, which of course is a long time, but better than forever.
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/eyes-charles-bonnet-syndrome#treatment-for-charles-bonnet-syndrome

A friend of ours has this (in his early 50's, loosing his sight slowly), and he says the key things are good lighting and trying to use the best part of your vision on what you want to look at (which might not be your central vision, so focussing on the corner of the TV can help put the screen in your best visual area). But acknowledging them as your brain trying to fill in the blanks has been key to him dealing with it

I'm a social worker and have come across enough people with it that it's something we actively do suggest to people and their families who are worried about people 'seeing things'.

At least there is more awareness of it now rather than older adults being bunged antipsychotics for what is essentially a sight problem.

My mother had this and found it quite distressing at first. She was losing her sight due to glaucoma, and when she started seeing things that weren't there, she thought she was losing her sanity. So the diagnosis was a relief in a way.

Mostly the hallucinations were pleasant: small people, animals, mountains in the sky(!).

Thanks everyone for the replies.
It's very early days, so hopefully she'll find some of the suggestions helpful. Trouble is, she's 97 so the online support groups aren't going to work, and I can't see her accepting phone counselling either!
She lives alone which makes it even more frightening for her. I'm worried this will be the end of her independent living.

A relative of mine with macular degeneration has suffered from this in the past. They still live independently on their own house at a similar age to your elderly person. They don't seem to currently be suffering with it so it's not permanent (for them)

Many years ago I worked for a sight loss charity which supported mainly older people. At that time, the thinking was that Charles Bonet Syndrome was very rare. But when I spoke to people with sight loss about it, the majority admitted they experienced it but hadn't told anyone as they thought they might be getting dementia. I think about 80% of people I dealt with actually experienced it.

They all lived independently although some had care workers visiting daily.

My father in law. He used to see snakes climbing up walls and all sorts. He sometimes found it very distressing, sometimes he found it amusing. He liked to tell us what he was seeing and he'd laugh about it. But other times he wouldn't be able to accept what he was seeing wasn't real and got very upset. He would phone us demanding we call the zoo to remove the snakes. He would get properly angry if we wouldn't call the zoo or drive across at 3am to catch the snakes. One time he managed to call an emergency vet in the middle of the night who came out to help him and was very confused by the absence of snakes.

His first diagnosis was of psychosis, I can't remember who changed his diagnosis or what prompted the change.

He wasn't really reading or following the tv by that point anyway, mainly just listening to the radio. So he just sat and watched the pictures play out on the wall.

It is a strange illness indeed. And not easy to cope with at all, for the sufferer or their family.

Yes this is my experience too. I think it's actually far more common than people realise but older people experiencing it don't want to tell anyone because they think they will be carted off to a care home with dementia.

Wow, I'd never heard of this but I immediately thought it sounded like something my aunt had - she used to see words appear on the wall - and sure enough the NHS page mentions macular degeneration as one of the linked conditions, which is what she had.

No advice to offer, only the observation that some of the things suggested wouldn't have been that practical to her as she had very limited mobility. But the hallucinations didn't cause her any distress.

Oh wow @User884721 that poor vet, and your poor father in law!

I really appreciate all the replies. She does have macular degeneration and had been losing the sight in one eye for a while now. This literally came in over night, she copied so well up until now, but this is just so cruel!

Thank you this is very interesting . My relative is very worried people will think she's losing her mind. Thankfully she was already under the care of an eye hospital and I managed to get her to talk to them. They've been great, but as you know, there is nothing they can do.

This is strange as my father today said he was sure he saw a cuddly toy which was actually a shadow from the curtain. He also has wet macular degeneration. Of all his ailments the vision loss has been the hardest to cope with as he loved reading and TV.

I have an update although it’s not a great one.

so the visual hallucinations have gone, but now my relative is in hospital having had a series of small strokes that took weeks to be fully noticed.

Drs have not confirmed or denied this, but we think the images were the first indication of the strokes. It’s too much of a coincidence to not be connected.

The prognosis is not good.