Dementia Care Meets Social Media
By Ian Steckler
Think about all the decisions you make when you wake up each day. You can choose your breakfast and mode of transportation, and you can agree to your friend posting photos of you on social media and tell them to avoid the awkward ones. You can speak up for yourself if someone looks to scam or exploit you. These are the luxuries of a competent mind we take for granted, luxuries people with dementia don’t always have. As a society, we prevent and report the exploitation of children on social media sites, but don’t provide the same consideration for those vulnerable adults who also have limited cognitive capacity. While there are some benefits to providing people with dementia with an online presence instead of hiding them out of sight, caregivers should be aware of the potential risk for harm.
Dementia advocates have taught me: If you’ve met one person with dementia, then you’ve [just] met one person with dementia. When I asked Lori La Bey, founder and CEO of Alzheimer’s Speaks and Dementia Map, to explain the reality of dementia to someone looking from the outside, she described that “dementia is really an invisible disease, especially in the beginning stages.” It presents in many different – and fluctuating – ways, so for any particular person, “they could be totally connected and talking with you one moment, and then walk away and be totally confused.” While speaking with La Bey over Zoom, she emphasized that myth busting the stereotype of someone “sitting in a wheelchair in end stages, half asleep and drooling” as the only image of dementia could remove some of the stigma and provide better accommodations to individuals with that invisible disease who still work and travel.
In medicine, the stakes of determining cognitive capacity accurately can be life or death, so the American Medical Associationand the Department of Health and Human Services lay out guidelines for obtaining informed consent. Providers must disclose the risks, benefits and alternatives to procedures and document that the patient’s decisions were made voluntarily. However, patients must be mentally competent enough to not only understand the nature of the situation and its consequences, but to rationally manipulate the information well enough to come to a conclusion. Models such as the MacArthur Competence Assessment Tool-Treatment (MacCAT-T) are used to evaluate competency for adults with diminished capacity, such as dementia and psychiatric illness. Since cognitive capacity is not one size fits all, James F. Drane suggests that we could alter the assessment with a sliding scale depending how much scrutiny is necessary based on “the dangerousness of the treatment decision,” with Lim and Marin elaborating on the specific criteria these models incorporate.
Stepping back outside the world of medicine, we could informally use a similar approach to determine if a person with dementia understands the implications of a family member or caregiver posting a video of them on Instagram. Can grandma decide if she wants to be shown on the Internet and articulate her decision? Does she understand how many people will see this post and that they can make comments about her? Did she arrive at the decision to consent through her own logic?
When we approach this issue as a matter of not merely consent, but informed consent, maybe we’ll think twice about embarrassing, perhaps, a confused old lady with dementia in the park singing a song by sharing it on TikTok. It might be funny to watch her running around frantically forgetting song lyrics – but would you laugh at the video all the same if it was your grandma? The confused old guy stumbling around the nursing home ranting is somebody’s dad, uncle, or friend. Even if he consented to filming the video with his daughter, did he actually consent to thousands of views on TikTok? Does he even know what TikTok is? You or I could easily recognize an exploitative post of ourselves and demand it be taken down. Similarly to children, a person with diminished cognitive capacity probably could not.
So why should we post videos of people with dementia at all? One of the most clear and immediate benefits is to the caregiver who has given up their time, sometimes even their job, to take care of their loved one and keep that person safely at home. The unseen burden leaves these caregivers without a support system, and social media opens up a chance for them to be understood.
Anderson et al. found using social media blogs to share resources, document families’ legacies, and promote altruism led to caregivers dubbing social media “the church of online support.” Lagervall et al. noted better mental well-being for caregivers after analyzing a Facebook support group for dementia caregivers. These videos fill the void of an “unmet need” in an isolating and frustrating time.
La Bey notes that another, more controversial benefit is educating the general public on what dementia can look like. Chances are you or someone you love will eventually be faced with this diagnosis, and photos and videos can fight stigma more powerfully than words. She has at times shared photos and videos of her mom in late stage dementia with messy hair and chipped teeth. Rather than hiding away her mom’s changes in appearance, she showcased the “pure joy… way past what we look like” that her mom expressed. She was able to educate others about accepting the chapters of people’s lives that are less than glamorous, but are fulfilling in new ways. Approaching these different versions of individuals across their lifetimes with validation rather than shame makes the journey easier both for us and for them. La Bey therefore believes intent may be the most important indicator of whether or not to post about #dementia. Is a post meant to support or educate? If it’s meant to attract followers, better to rethink before sharing.
What about humiliating posts that do go too far? Take these 47 documented incidents of exploitation by nursing home staff between 2012 and 2015. Lance A. Slatton, a senior care influencer, case manager, and host of the All Home Care Matters podcast, is passionate about pushing social media companies to take responsibility for the exploitative posts circulating on their platforms. He highlighted in our Zoom interview how we entrust these companies to ensure safeguards, but it’s clearly not sufficient if some caregivers are still sharing vulnerable videos of their residents without consent. We can’t monitor every individual’s actions, so while education may help a friend or relative think twice, will it stop a nursing home aide from posting about essentially a stranger? Currently, social media companies lack a much-needed mechanism to report the exploitation of adults with diminished capacity or a protocol to remove such posts.
Slatton and his team reached out to Meta (owner of Facebook and Instagram), YouTube, Google, and X formerly known as Twitter and described to me how they received “very canned” answers, simply that “they’d look into it.” As a content producer himself, he gets prompted by YouTube’s question before posting: Do children appear in this video? Which brings him to a simple solution. “Why can’t they just add another question,” he suggests, “Does everyone appearing in this video provide their consent?” There’s obvious loopholes – did you really ask for everyone’s consent? – but it not only makes us think twice before posting, it adds a layer of accountability. Perhaps even a simple warning against posting videos of people with reduced decision-making capabilities without their consent would help. If the policy to prevent exploitative videos from circulating doesn’t exist, how can we expect companies to investigate questionable posts for removal?
Everyone draws their own line at where ethical social media posting ends and exploitation begins, so there will always be arguments whether a particular video is appropriate or not. At the end of the day, intent, education, and accountability seem to be the best toolkit we have for keeping our dementia community’s best interests at heart.