Social Media Accounts Following Diagnosis of Alzheimer’s

[Firecatcher]

Just wondered how families manage social media accounts with PWD.

A few days ago my Mum completely misinterpreted a post my cousin who lives abroad had shared on Facebook over two weeks ago. The post was appealing for witnesses regarding a fatality in a road traffic accident in the area where my cousins live. Although there was a photo of the victim my Mum thought it was my cousin’s older brother who’d been killed. My husband and I received a frantic phone call from my Dad whilst we were driving. At the time us wasn’t clear where the information had come from and it wasn’t until we’d been able to phone her back and I could hear her screaming in the background about a post on FB which she now couldn’t find. I must admit alarm bells started ringing at that point as I’d seen posts by my family earlier that day and doubted they’d broadcast anything like that on social media.
My poor husband accidentally drove through a red light on the way home and I then had the difficult job of trying to contact my family. Although it was a huge relief to find nothing had happened to anyone the sheer emotional fall out took a long time to subside.
I’m unclear why a FB post from a fortnight ago had suddenly appeared in my Mum’s feed but guess it must. e something to do with the algorithm.
Predictably my Mum had forgotten all about it by the following day but the consequences of her mistake are likely to stay with us for a long time particularly if our car was caught in camera driving through a red light. Since then I’ve been feeling really upset and angry about the problems she caused although I realise it’s nothing like some people have to put up with.
I hope this was a one off but feel it won’t be. Had anyone else has had problems with PWD on social media, how have they dealt with and have they ended up asking for the account to be deleted. I understand you can do this if the person had a definite diagnosis of Alzheimer’s.

 

[Rosettastone57]

No personal experience of this, my mother-in-law had no knowledge of the internet, let alone using Facebook. Hopefully others will be along soon with better advice

 

[Firecatcher]

No personal experience of this, my mother-in-law had no knowledge of the internet, let alone using Facebook. Hopefully others will be along soon with better advice

Thanks. I wish my Mum wasn’t online. I didn’t have a problem before her memory deteriorated and was pleased she’d embraced technology but now I feel she’s really vulnerable.

 

[Lawson58]

i am not on Facebook and certainly no expert but I thought you could block people who could contact you. My thought was that you could have a bit of a housekeeping exercise and minimize who can contact your mum. You might have to do it occasionally in case she has added friends.

I know my children have a Facebook page which is restricted to cousins only. There are first, second and third cousins on it but absolutely no friends allowed.

 

[jugglingmum]

I know my children have a Facebook page which is restricted to cousins only. There are first, second and third cousins on it but absolutely no friends allowed.

I think this is completely different to what was seen, what you are referring to here sounds like a Facebook group, where they can post info to each other, like a whatsapp group these tend to work very well for families, it might even be a group chat.

What firecatcher's mum saw was a post by a cousin as what often happens is people share local news pages etc, and you can see all the posts made by friends.

I often share lost dogs local to where I live or stolen bikes again local to where I live. This week I shared a post about a female racing cyclist killed by an incident with a lorry (she was on a racing team which I know people on - and went up the inside of the lorry into it's blind spot so lorry wasn't at fault). This sort of post which I've shared all my facebook friends see - given the majority of my friends are cyclists then this was relevant. What can happen is those that don't use facebook often will see posts from several days or weeks ago, or those without many facebook friends. So one friend often comments on posts a week later as I suspect she only logs on once a week (she is a cyclist who I see at races when I get to them).

I'm not really sure how I would approach this, I do have a couple of 'facebook' friends in their 80s, one is very facebook savvy, the other you can tell by the nature of her comments isn't (I went to a French nightclass with her about 15 years ago - but she is a cyclist and so we kept in touch as we have many mutual friends).

I suspect like many aspects of dementia, someone will need to take control, as a PWD with access to a computer could get into all sorts of trouble and scams.

 

[Ruth1974]

My OH kept his facebook for a couple of years. I occasionally went through it and unfriended people (he was gathering friends like mad). I taught him to use a kindle in the early stages so his facebook, some web pages etc were great for him until he forgot how to use them. Most people knew he had alzheimers and those who didnt worked it out.

 

[Firecatcher]

i am not on Facebook and certainly no expert but I thought you could block people who could contact you. My thought was that you could have a bit of a housekeeping exercise and minimize who can contact your mum. You might have to do it occasionally in case she has added friends.

I know my children have a Facebook page which is restricted to cousins only. There are first, second and third cousins on it but absolutely no friends allowed.

Thanks. I’d previously done a housekeeping exercise on my Mum’s privacy settings on FB to minimise who can contact her. This post in question was shared by a family member. They’ve said they’ll be more mindful in future and not share everything they post with my Mum.

 

[Lynmax]

If you know how to access your mums FB account, then simply unfriendly her from anyone you don't want to contact her, maybe only those people who are aware of her diagnosis,

My mum does not use any modern technology but was scammed several times over the phone. So I installed a dementia friendly call blocker on her phone and only added key family and friends to the trusted list. Anyone not on the list gets a recorded message telling them to call me on my mobile so I can get them.

Deleting unnecessary friends is pretty much the same thing.

 

[Firecatcher]

If you know how to access your mums FB account, then simply unfriendly her from anyone you don't want to contact her, maybe only those people who are aware of her diagnosis,

My mum does not use any modern technology but was scammed several times over the phone. So I installed a dementia friendly call blocker on her phone and only added key family and friends to the trusted list. Anyone not on the list gets a recorded message telling them to call me on my mobile so I can get them.

Deleting unnecessary friends is pretty much the same thing.

Thanks for replying.

My Mum’s Facebook friends aren’t the problem as she only has family as friends. The post my cousin shared was the kind of thing I’d have shared if there’d been an incident in my area. It was my Mum’s total misinterpretation of it, the distress caused and the possibility of a motoring fine, points on driving licence and increased insurance - all things I can’t afford. I really wish my Mum wasn’t online but guess it’s only so long before she’ll forget how to use her computer.

 

[imthedaughter]

Thanks for replying.

My Mum’s Facebook friends aren’t the problem as she only has family as friends. The post my cousin shared was the kind of thing I’d have shared if there’d been an incident in my area. It was my Mum’s total misinterpretation of it, the distress caused and the possibility of a motoring fine, points on driving licence and increased insurance - all things I can’t afford. I really wish my Mum wasn’t online but guess it’s only so long before she’ll forget how to use her computer.

Yes unfortunately I think all you can do is ask people to exclude your mum from any posts which may trigger her like this, and make sure her security settings are maximised. They will probably forget to do this, but if you see the post first you can always remind them as it sounds like your mum doesn't go on the site that often?

I recently saw a story about a PWD who was targeted via Instagram and sent tens of thousands of pounds to her 'boyfriend on the internet'. There's nothing her family can do as she sent the money willingly.

If it becomes something of a habit and a problem the wifi may have to break... I have to say I used to get very frustrated with Dad for not keeping up with technology better, especially considering the capability he used to have (he wouldn't even learn to use facetime to stay in touch with his grandchildren, and it made me really cross) but I'm quite grateful for it now!

 

[Lynmax]

Thanks for replying.

My Mum’s Facebook friends aren’t the problem as she only has family as friends. The post my cousin shared was the kind of thing I’d have shared if there’d been an incident in my area. It was my Mum’s total misinterpretation of it, the distress caused and the possibility of a motoring fine, points on driving licence and increased insurance - all things I can’t afford. I really wish my Mum wasn’t online but guess it’s only so long before she’ll forget how to use her computer.

Yes, monitoring her friends would not prevent this from happening again. I guess all you can do is remind your family to be mindful when they post items that your mum might misinterpret. I'm not an expert on social media so am never sure exactly who reads my posts so I tend not to post or repost anything without thinking of the wider implications!

I think if my mum used FB, I would delete the app and blame someone else, and then take ages to fix it in the hope she forgets about it! But I think my mum is further down the road of dementia than yours.

I hope you did not get caught by a camera at the lights! Fingers crossed!

 

[Ruth1974]

Yes, monitoring her friends would not prevent this from happening again. I guess all you can do is remind your family to be mindful when they post items that your mum might misinterpret. I'm not an expert on social media so am never sure exactly who reads my posts so I tend not to post or repost anything without thinking of the wider implications!

I think if my mum used FB, I would delete the app and blame someone else, and then take ages to fix it in the hope she forgets about it! But I think my mum is further down the road of dementia than yours.

I hope you did not get caught by a camera at the lights! Fingers crossed!

Its also possible to set permissions so that she sees very few family posts but you can then join pages that send her a stream of amusing cat videos or whatever would brighten up her day. I joined my husband to a page that posted regular football clips and updates