Americans With Dementia Are Grieving Social Media

It took my father nearly 70 years to become a social butterfly. After decades of tinkering with Photoshop on a decrepit Macintosh, he upgraded to an iPad and began uploading collages of photos he took on nighttime walks around London to Flickr and then to Instagram. The likes came rolling in. A photographer from Venezuela applauded his composition. A violinist in Italy struck up a conversation about creativity.  

And then, as quickly as he had made his new friends, he lost them. One night in 2020, he had a seizure. Then he began forgetting things that he’d just been told and sleeping most of the day. When he picked up his iPad again, it was incomprehensible to him. A year or so later, he put an electric kettle on the gas stove. Not long after, he was diagnosed with Alzheimer’s.

An estimated 7 million Americans age 65 and older are currently living with Alzheimer’s; by 2050, that number is expected to rise to nearly 13 million. Millions more have another form of dementia or cognitive decline. These diseases can make simple tasks confusing, language hard to understand, and memory fleeting, none of which is conducive to social connection. And because apps and websites constantly update, they pose a particular challenge for patients who cannot learn or remember, which means that people like my father, who rely heavily on social media to stay in touch, may face an even higher barrier to communication.  

When my father turned on his iPad again about a year after his seizure, he couldn’t find the Photoshop app because the logo had changed. Instagram, which now had Reels and a shopping tab, was unnavigable. Some of his followers from Instagram and Flickr had moved on to a new app—TikTok—that he had no hope of operating. Whenever we speak, he asks me where his former life has disappeared to: “Where are all my photos?” “Why did you delete your profile?” “I wrote a reply to a message; where has it gone?” Of all the losses caused by Alzheimer’s, the one that seems to have brought him the most angst is that of the digital world he had once mastered, and the abilities to create and connect that it had afforded him.

[Read: My dad had dementia. He also had Facebook.]

In online support forums, caretakers of Alzheimer’s and dementia patients describe how their loved ones struggle to navigate the platforms they were once familiar with. One member of the r/dementia Subreddit, who requested not to be identified out of respect for her father’s privacy, told me that, about a decade ago, her father had been an avid emailer and used a site called Friends Reunited to recall the past and reconnect with old acquaintances. Then he received his dementia diagnosis after back-to-back strokes; his PC now sits unused. Amy Evans, a 62-year-old in Sacramento, told me that her father, who passed away in May at the age of 92, started behaving erratically online at the onset of Alzheimer’s. He posted on Facebook that he was looking for a sex partner. Then he began responding to scam emails and ordering, among other things, Xanax from India. Evans eventually installed child-protection software on his computer and gave him a GrandPad to connect with family and friends. But he kept forgetting how to use it. Nasrin Chowdhury, a former public-school teacher’s aide who lives in New York City, once used Facebook to communicate daily with family and friends, but now, after a stroke and subsequent Alzheimer’s diagnosis at 55, she will sit for hours tapping the screen with her finger—even if nothing is there, her daughter Eshita Nusrat told me. “I’ll come home from work, and she’ll say she texted me and I never replied, but then I’ll look at her phone and she tried to type it out in YouTube and post it as a video,” Chowdhury’s other daughter, Salowa Jessica, said. Now Chowdhury takes calls with the aid of her family, but she told me that, because she can’t use social media, she feels she has no control of her own life.

Many patients with dementia and related cognitive disorders lose the ability to communicate, regardless of whether they use technology to do it. It’s a vicious cycle, Joel Salinas, a clinical assistant professor of neurology at NYU Grossman School of Medicine, told me, because social disconnect can, in turn, hasten the cognitive degeneration caused by Alzheimer’s and dementia. Social media, by its very nature, is an especially acute challenge for people with dementia. The online world is a largely visual medium with a complex array of workflows, and dementia commonly causes visual processing to be interrupted or delayed. And unlike face-to-face conversation, landlines, or even flip phones, social media is always evolving. Every few months on a given platform, buttons might be changed, icons reconfigured, or new features released. Tech companies say that such changes make the user experience more seamless, but those with short-term memory loss can find the user experience downright impossible.

On the whole, social-media companies have not yet found good solutions for users with dementia, JoAnne Juett, Meta’s enterprise product manager for accessibility, told me. “I would say that we’re tackling more the loss of vision, the loss of hearing, mobility issues,” she said. Design changes that address such disabilities might help many dementia patients who, thanks to their advanced age, have limited mobility. But to accommodate the unique needs of an aging or cognitively disabled user, Juett believes that AI might be crucial. “If, let’s say, Windows 7 is gone, AI could identify my patterns of use, and adapt Windows 11 for me,” she said. Juett also told me her 97-year-old mother now uses Siri to make calls. It allows her to maintain social ties even when she can’t keep track of where the Phone app lives on her iPhone’s screen.

[Read: How people with dementia make sense of the world]

The idea of a voice assistant that could reconnect my father to his online world is enticing. I wish he had a tool that would allow him to connect in the ways that once gave him joy. Such solutions will become only more necessary: Americans are, on average, getting both older and more reliant on technology to communicate. The oldest Americans, who are most likely to experience cognitive decline, came to social media later in life—and still, nearly half of the population over 65 uses it. Social media is an inextricable part of how younger generations connect. If the particular loneliness of forgetting how to use social media is already becoming apparent, what will happen when an entire generation of power users comes of age?