“That’s a conversation that people with dementia have been having now for a while,” says Kate Swaffer, a cofounder of Dementia Alliance International, an advocacy group whose members all live with the condition. Swaffer was diagnosed with younger-onset semantic dementia in 2008, when she was 49.

In some ways, these conversations echo ongoing discussions about “sharenting,” family vloggers, and parenting influencers. Kids who were once involuntary stars of their parents’ social media feeds grow up and have opinions about how they were portrayed. But adults with dementia are not children, and whereas children develop the ability to consent as they grow older, theirs will diminish permanently over time.

Legally, a care partner or family member with power of attorney can consent on behalf of a person who is unable to do so. But advocates say this standard is not nearly enough to protect the rights and dignity of those living with later-stage dementia.

Swaffer’s own standard is this: No one should share content about someone in those stages of dementia—whether on Facebook, in a photography exhibition, or on TikTok—if that person has not explicitly consented to it before losing the cognitive capacity to do so.