Top Ten Online Caregiver Advocates

August 1, 2012

Upon my introduction to the world of caregiving, I felt (and still feel) a pressing need to thoroughly research the history, statistical movements, and demographics of caregivers. As I’ve noted before, the Internet has the power to connect an individual user to millions of caregivers but it often feels like following a trail of poorly laid breadcrumbs. There are certain hubs of activity but mostly narrow pathways to the many blogs and articles written for/by caregivers. For someone as new and inexperienced as I was to caregiving, I turned to the thought-leaders in the community to connect the dots and make sense of this entire world previously unknown to me. These were the names I saw consistently popping up in Google searches, on my Twitter feed, on Facebook. After further investigating these leader’s stories and their caregiver followings, they became some of my personal heroes. I appreciate the time they have spent online, devoted to informing and supporting caregivers and advocating on their behalf.

Here’s how this list works.

  • Recognizing my subjectivity and bias, I have tried to make this as objective as possible. I have excluded Adrienne Gruberg from the list since she is my personal favorite source of expertise, owing to her geographical proximity and general awesome-ness.
  • My understanding of an online caregiver advocate is someone who is available on many social platforms, engages directly with followers, creates and provides online educational materials, and advocates on behalf of caregivers
  • All of that being said, my ratings will be based on the number of followers across all platforms, engagement, resources provided, and advocacy campaigns. You can check out my breakdown of scores here.
  • To qualify, candidates should provide support for all types of caregivers and work primarily within the non-profit community.

After many calculations and a great deal of research, I’m happy to present to you the top ten online caregiver advocates!

10. Donniel Robinson, Lost in Your Care
Score: 821

“Caregiving can get lonely, don’t forget to connect with friends regularly.” This is a typical 140 characters or less tweet from Donniel Robinson, providing encouragement and support to caregivers. Her focus is to help “caregivers nurture themselves” through tweeting and blogging.

9. Chris MacLellan, The Purple Jacket
Score: 1,939

I’m happy to see “The Bow Tie Guy” made it on the list! He has be a very visible advocate and supporter. Active on Pinterest, Twitter, and Facebook, Chris MacLellan has made himself available to caregivers on many social platforms. His blog is inspirational and informative, providing a voice for the largely unheard population of LGBT seniors and caregivers.

8. Zachary White, The Unprepared Caregiver
Score: 2,932

While his blog has fallen into the archives and his Twitter account has a mere 118 tweets, Zachary White is a champion on Facebook. With 2,772 page likes and an average of 50 likes per post, his followers are prone to engaging in long conversations prompted by short, insightful accounts on life as a caregiver. Poetic and perceptive, White’s fragments of honesty give his followers the rush that comes from feeling understood.

7. Trish Hughes Kreis, Robert’s Sister
Score: 3,399

If you’ve ever read her blog I’m sure you already understand what a huge advocate Trish Hughes Kreis is, not only for her brother, but also for all caregivers. If you haven’t, allow me to fill you in—she’s the real deal. With a special understanding of caregivers for loved ones with epilepsy and working caregivers, Trish contributes to caregiving advocacy in humorous, reflective, and often touching shares, Tweets, posts and pins.

6. Gary Barg, Today’s Caregiver
Score: 4,168

One of the original caregivers to gain recognition and a following, Gary Barg has steadily risen within the caregiving community. Today’s Caregiver is the first of its kind and his website is chock-full of helpful resources for caregivers. When I was making bets with myself for the rank of number one, I believed him to be a likely candidate. But after my data collection, it became apparent that the lack of a blog and only partial Twitter engagement would bring him down the ranks. This in no way undermines the hard work he has done to put out a daily e-newsletter and monthly magazine, plus build a vast network of resources. But much of what makes Gary Barg a pioneer weren’t variables measured in this experiment.

5. Stan Goldberg, Living, Caregiving, Dying, and Recovering Joy
Score: 4,509

Deeply spiritual and profound, Stan Goldberg is a wonderful resource for caregivers. He covers topics that often surround caregivers using his sharp intellect and gentle encouragement. He is quick to respond to comments, offering detailed responses to questions asked. He is certainly a craftsman with words, weaving together a story of life, death, caregiving and recovery: presenting it in bite-sized morsels on Twitter and then further showcasing his talent in rich articles on his blog.

4. Natrice Reese, @NatriceR
Score: 5,514

Unlike many of the other candidates, Natrice Reese is primarily a social user of social media. Almost all caregiver advocates are tweeting to raise awareness of their cause, but often sacrificing social connections for repetitive tweets about their latest blog post. Not Natrice. She is less of an organization and more of a—well—human, tweeting about how she understands being human. A large portion of that is through a caregiver’s eyes. She fosters friendships on Twitter, checking in with people every so often; retweeting many helpful or insightful 140 character comments; participating in healthcare chats. She’s an advocate on behalf of others as a bonus for being a supreme advocate for herself.

3. Lynn Greenblatt, Caregiving Café
Score: 6,034

Using her blog, Facebook, and Twitter, Lynn Greenblatt provides reassurance for caregivers. She has a wealth of resources on her website, along with many guest bloggers that provide a unique perspective on caregiving. Her high score is in part due to her dedication to providing specific resources to specific Twitter followers. I was surprised at her score because I don’t often see the Caregiving Café twitter handle come up on my feed. But upon further investigation, I noticed that her tweets focus on connecting her resources with those who might need them. A typical tweet from Lynn looks like this: “@yellowrs999 Raising special needs children? Check out this exciting book written by @marimouth http://buff.ly/Q7nGOG #educationreform” Thus, they aren’t showing up on our newsfeed but only that of the tweeter addressed. Lynn seems to aim (and achieve!) thoughtfulness and relevancy in her advocacy.

2. Denise Brown, Caregiving.com
Score: 11,354

“Good morning! A cool breeze refreshes, making me wonder: How can today be a breeze? Create a breeze by graciously managing what comes along.” – Denise Brown, @caregiving

Let me break the code of bias-lessness and say, I was rooting for Denise Brown to earn a high rank. Take a look at her site, her Twitter feed, her posts, and you’ll understand why. She been working with family caregivers since 1990 and expanded her advocacy reach by founding Caregiving.com in 1996. She has adapted and expanded her advocacy strategies brilliantly over the years to best suit her audience as well as the changing social and economic climate. Even among advocates on a general level, Denise’s compassion, insight, and dedication shine brighter than the rest. The Disrupt campaign, AfterGiving.com, and SharingStore.com were all created with a genuine interest in a caregiver’s needs. What makes Denise’s actions so special, besides her obvious hard work and thoughtfulness, is the group of caregivers that she has provided an online space for. A number of the advocates ranked on this list are part of the Caregiving.com crew. Apparently her unwavering enthusiasm for caregiver advocacy is contagious!

1. Rob Harris, RobCares
Score: 13,859

A caregiver since 1990, Rob transitioned organically into the advocate role. He has since published a book, created an incredibly supportive blog and website, developed a huge following on Twitter, and continues to publish thoughtful posts on Facebook. He responds to every tweet sent his way, engaging with his audience consistently; crafting perceptive statements and questions addressed to caregivers. Rob earned our number one rank because of his long history with caregiver advocacy. He’s been a supporter of the cause for over twenty years. Can you imagine? Our society is just now (barely) catching onto the needs of caregivers. He has been at it for years already. It’s no surprise that our first and second ranking caregiver advocates are also the ones who have been in the “business” the longest. They have an intimate and invested perspective on how to best support caregivers.

I want to thank these ten advocates for their dedication to caregivers. And for the many, many more caregiver advocates out there—I wish I could have included you all on this list.

Lastly, the self-aware caregiver is the most powerful advocate. You don’t have to be a tweeter, a pinner, a poster—you being you is a very special thing. After all, we wouldn’t be where we are today if it wasn’t for you.

Please provide your feedback: Who is your caregiver advocate? Who have you noticed working tirelessly to support caregivers?

Photo Credits: Blog/Twitter accounts. Photos are linked back to source.
Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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