November is National Family Caregivers Month, a time to honor the work of the more than 50 million people who care for loved ones — work that too often goes without recognition, pay or support — and to raise awareness of the challenges that those family caregivers face, such as needing to juggle their role as caregiver with work and other responsibilities.
As part of their work educating and supporting family caregivers, AgeTech Collaborative™ business services Dementia Darling, willGather and Be Light Care Consulting have been pioneers at the intersection of caregiving and social media. Leveraging the power of podcasting and platforms such as Instagram and TikTok, they have tapped these new media to reach hundreds of thousands of caregivers with recognition, community and practical, hands-on tips for caregiving — making them bona fide “caregiving social media influencers.”
Dementia Darling is the online persona of Carrie Aalberts, an experienced dementia caregiver and dedicated ambassador for raising awareness of dementia and improving the lives of those impacted by dementia. Carrie offers a variety of services for caregivers, and the Dementia Darling website features resources including blog posts, links to other resources in the dementia caregiving space, and blog posts on topics such as pet therapy in dementia care, tips for handling difficult situations with care recipients, and supporting people living with dementia during natural disasters.
Instagram is Carrie’s primary social media channel, which has more than 37,000 followers and where she posts frank but upbeat—even whimsical—content that both entertains and educates readers on topics such as seasonal stress, settling a loved one into senior living, and creating a space for caregivers to chime in on why “Dementia Sucks.”
“In my work with dementia patients, I would meet the family caregivers and I discovered a recurring pattern: They weren’t feeling seen, they weren’t being thanked and they were feeling isolated,” says Aalberts. “That didn’t sit right with me. Family caregiving is the hardest job in the world, and I thought, ‘How can I be a cheerleader for them?’ That’s why I started Dementia Darling.”
“By using social media, I’m able to get into spaces where I can reach more people than I could in my personal life,” says Aalbert. And the work is having real impact. “Every day, people who see my content reach out and tell me how validated they feel and how grateful they are for the community they’ve discovered.”
Nicole Will, the driving force behind willGather, has dedicated her career to enhancing the well-being of older adults and their families, caregivers and healthcare professionals. Will advocates for older adults and their caregivers via a multifaceted platform, including a weekly podcast, “Navigating the World with Your Aging Loved One.” Designed for family and professional caregivers alike, the show features insightful interviews with experts on topics such as “Addressing the Unique Needs of Rural Dementia Caregivers,” “Navigating Healthcare Complexities” and “Walking Toward a World without Alzheimer’s.”
“The question for me was, ‘How do I take what I know and what I’m learning and share that to empower older adults and their caregivers?’” says Will. “I found that podcasting is a great way of reaching people: It forms a sense of one-on-one connection because listeners connect with our voices. Podcasts offer a unique ability to share thought leadership, which helps establish your credibility. You can also share personal stories, which help build a sense of trust that can lead to an incredible sense of community.”
Will finds that the sense of community has been an important component of willGather’s success. “We touch lives in different ways, and people keep coming back and engaging with the community we’ve built, because they see our hearts are in the work. It’s been incredible to see the growth of willGather’s reach and the impact of our mission.”
In fact, this infectious sense of community is manifested among the founders of all three companies themselves, who often work together, including a collaboration between Aalberts and Will hosting a podcast called “Gather Darlings.” “‘Gather Darlings’ is a less formal podcast,” says Will. “It’s like we’re sitting in a living room with a friend, having a conversation and making connections.” Albert agrees: “We want to be like a friend in our listeners' ear, bringing some joy and levity, and providing them with a sense that they are seen and appreciated.”
Be Light Care Consulting has a mission to light the path and lighten the load of personal and professional caregiving. Founded by Adria Thompson, the company offers business consulting services to help clients understand the unique needs of people with dementia and their caregivers. But Be Light’s specialty is its social media presence, with more than 350,000 followers across TikTok, Instagram and other social media platforms.
“I’m a speech language pathologist, and I built a reputation for specializing in dementia cases, and I created a dementia training program for occupational, physical and speech therapists,” says Thompson. “I was brainstorming ways to share my expertise, and I was inspired by seeing caregivers on their break, watching videos on their phones. I wanted to crawl inside their phones and teach them the things that will make their caregiving better and easier — so that’s what I did. I started posting videos on TikTok and Instagram.”
It wasn’t long before Be Light’s social media presence exploded. “People started finding my account organically, and we now have more than 400 videos that are 90 seconds or less,” says Thompson. The videos feature quick, practical advice for the day-to-day care of someone with dementia, such as how to get someone to drink water when they don’t want to.
“I teach short, practical tips on how to be non-confrontational and motivational when communicating with people who have dementia,” Thompson says. “Social media has amplified our expertise, and offers a global platform that we wouldn’t otherwise have.”
Besides offering the potential for a wider reach, all three founders agree that leveraging the power of social media brings other benefits — not the least of which is that the resources they offer are free. “There is a lot of financial pressure on family caregivers, but they can access these resources free of charge,” says Will. Brevity and convenience is another benefit. Will continues: “People are online already, so social media and podcasts are something they can incorporate into their lives; the barrier to entry is low.”
Aalberts concurs that using social media to educate and support caregivers makes the material more accessible. “Dementia is a progressive disease, and there’s so much information that if you try to consume it all at once, it will hit you like a brick wall,” she says. “What we’ve done is break it down so you can absorb the information in chunks, when you need it. Plus, on social media, it’s all shareable.”
There are, however, a few challenges to leaning into social media. “We straddle the line between content creation and science,” says Thompson. “We are social media influencers, but that might not seem respectable, given that not everyone on social media is evidence-based the way we are. But we take our visibility and our responsibility seriously.”
Yet the benefits clearly outweigh the downsides. “We're impacting people with dementia and their caregivers in their homes,” says Will. “But a lot of professionals are also learning from the work that we're doing and taking those tips and skills into work with them.” And, as Thompson concludes, “We exist to amplify anything that will better the lives of individuals with dementia or their caregivers.”
Visit their websites to learn more about Dementia Darling, willGather and Be Light Care Consulting, and reach out directly to the companies to learn more about the support and business services they offer to AgeTech Collaborative participants.
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