Loss of social media = loss of community

Cloverover20

Hi, I'm wondering if anyone else is experiencing this:

In the years before my dad was diagnosed and began showing symptoms of Alzheimers, he became a social media power user. He's an artist, and he began posting to Flickr and instagram, establishing strong bonds and connections with artists all over the world.

His decline was fairly sudden, for reasons doctors haven't been able to pinpoint, and his confusion over losing his "friends" is one of the greatest sources of anxiety and depression for him. It doesn't help that apps keep updating, but even if they didn't, he doesn't understand why he suddenly "can't message people," or their profiles have "disappeared."

I try to help, as does my mother, but I'm overseas, and she isn't the most tech savvy at the best of times.

I'm a writer, and if there are others also experiencing this, I'm thinking of writing about it for The Atlantic. Can anyone relate?

M1

Welcome to the forum. I'd put it in perspective as a new twist on an old theme, in that all people with dementia lose friends and family and have their world shrink. Social media is just a relatively new platform for this to happen. Be it that they can't work the TV remote, their email, the telephone, the car, can't read newspapers or books, can't maintain reciprocity in relationships, or follow the plot of a Tv show or movie, - people with dementia gradually lose ability to relate to the world and other people. The lucky ones go out with a few loved ones holding their hand, but some don't even get that. I don't mean to throw cold water on your idea, there might be a good article there. But the losses aren't particularly new to those of us who witness it in multiple ways.

Cloverover20

Thanks so much for your thoughts. I don't feel cold water at all! My father is the sixth person I've watched fade away with the disease, but definitely the first to be so very distressed by his confusion navigating social media.

It is not simply confusion utilizing tech, although that's obviously a component, it's the fact his (sadly) entire friendship circle is now unavailable to him thanks to his inability to navigate the app. Friends are lost in many ways, but it is indeed new for it to be due to an app update, and forgetting the difference between a feed, reel and profile. He isn't yet at the phase of forgetting people, so explaining to him over and over that we/they haven't deleted profiles, is particularly sad.

mabelgirl

my mother had same issue with the phone when she was at my brothers. It was the only communication she had with her children, sisters and friends. She would forget how to get to her contacts and accused folks of deleting her contacts to keep her from calling. In her mind it certainly was not her doing it and since she didn’t realize she wasn’t using the phone right someone else must be at fault. It is definitely sad but also frustrating. When she moved in with me I got her a phone for people with dementia and also set up her iPad to use. It was her only socialization. Now I did ensure everyone my mom called or friends with on FB understand her situation so as to be patient with her. I wonder if there could be an easier app for your dad to reconnect .

harshedbuzz

@Cloverover20

Sadly, your dad's experience is pretty typical in terms of the both the narrowing social circle and the loss of the inability to use technology.

A PWD's social circle will shrink over time as they become less able to hold up their end of the relationship and become harder to engage with. There is also the risk of a PWD saying/doing something uncharacteristic of their previous selves because of a lack of social filter and alienating people. Sad as this is, it is protective of his reputation.

Dad's inability to keep up with his peers and his loss of social filter caused him to burn through social circles in 3 states. They kept moving to get a fresh start.

The suggestion to try a simpler device is seldom successful. PWD lack the working memory to learn new skills, so it's very likely he wouldn't figure that out either. I've seen others attempt to keep a parent engaged by moving them from a smartphone to flip phone because they're simpler and fail.

The other piece is that, IME, the internet is not a safe space for a PWD. Full stop. My mom ignored my pleas to get dad off the computer, but she was disinclined to take away something that gave her a break. Before he completely forgot all his passwords, he managed to lose $360K day-trading. She paid a high price for those breaks.

HB

sandwichone123

My dh was posting on social media far into his journey, and his posting made it perfectly clear to everyone how much he had lost. I didn't delete his account from his phone until after the second time he posted all my contact information.

For him the more challenging change came when he could no longer play his computer games. He had been limping along for a couple of years with the game getting more challenging and him needing more support logging in until he could no longer play at all. In their own way, the characters (not other players) on the MMORPG had been his social circle since Covid had sent us home from work. That loss left him lonely and directionless, having to interact with real people in his care facility. In a short period he was able to move on to live without electronics and participate in the activities. He is active and well-liked in his facility now.