Social Media for Caregivers: Making the Most of the 24/7 Lifeline

Facebook has its flaws: do we really care about what celebrities are dating or divorcing, what your best friend had for dinner, or how many hours your sister-in-law spent at the DMV?

But when you weed out the nonsense, social media can be a lifeline for caregivers. Across the street or across an ocean, someone is always available…and in the isolating experience of caregiving, this constant connectivity carries many benefits.

There are risks too. Here, three caregiving experts—who are also experienced family caregivers—share tips for leveraging social media safely and efficiently while in a caregiving role:


Shelley Webb, consultant, coach and advisor to caregivers world-wide, and moderator of the Caregivers Connect Facebook group

  • When speaking of the person for whom you are caring, don’t use their name—Mom, Dad or a similar title is best to protect from interlopers and for HIPAA compliance.
  • Don’t share photos of the individual(s) in your care without permission, and don’t share those “less-than-attractive” images at all.
  • If you join a virtual caregiver support group on Facebook, be sure that it is a closed group. Otherwise, what you say may be visible to your friends and family and may cause hurt feelings.
  • Don’t hire anyone you meet on-line unless it is through a trusted mutual friend.
  • When posting images of your whereabouts, it’s best to share after you have left the location. When posting images on Instagram, keep your location private.
  • When searching health information, remember that there is a lot of misinformation on the internet. Use a reliable, trusted search engine.

Connie Chow, founder of DailyCaring.com, a website and daily email newsletter with free, practical caregiving tips that help families caring for older adults

  • Take care not to share personal information with new friends and beware of anyone who joins a group and suddenly starts private messaging you about topics unrelated to caregiving. If you have any concerns or suspicions, don’t hesitate to report them to the group administrator—a suspicious person is likely targeting multiple people in your group.
  • Updating your privacy settings also keeps you safe from prying fraudsters, especially on Facebook. Under Settings > Privacy, I’d recommend only allowing Friends or Friends of Friends to see your posts, message you, or see personal details and contact information.
  • Be wary of sharing too many personal details or trusting too quickly. Scam artists prey on trusting individuals so they can steal money and personally identifiable information. Be safe and stick with group conversations until you get to know people better. Over time, you’ll be able to separate a true caregiver friend from a fraudster.
  • Caregiver groups are intended to be safe, positive, and supportive spaces where you can share and ask questions. But they’re also filled with people who have different opinions and beliefs. Sometimes people can make thoughtless or mean comments. If that’s happening too often, the group administrator isn’t keeping the tone positive, or it’s making you angry or sad, it’s likely time to leave that group.
  • If there’s too much negativity in a certain group and it no longer feels supportive, remember that you’re free to leave the group at any time, without any explanations.

Denise Brown, founder of CareGiving.com, the first website to add online caregiving support groups, daily caregiving chats and blogs written by family caregivers

  • I regularly blog about my caregiving experiences on CareGiving.com. To protect my family’s privacy, I refrain from using my siblings’ names and only refer to a sister or brother as “Sibling.” My last name differs from my parents, which means I also protect their privacy as I vent and release and share.
  • Use your social media networks for different purposes. For instance, you might want to use Facebook for general updates, nothing too personal or intimate. You can join Twitter or a caregiving-related website to share more personal details—like your frustrations, your guilt and your worries.
  • You can keep anonymity on Twitter or a caregiving-related website, which means you won’t upset a family member or instigate a family fight with your updates. When you join CareGiving.com, you just need a valid email address. You can create an account with a nickname rather than using your real name: for instance, we have members named TheDogMama and LookingHeavenward who also blog about their caregiving days.
  • For an added layer of protection, create a separate email address you use just for your social media accounts. If your social media account gets hacked, the hackers have access to an email account that contains very little personal information.

Want to join an online support group? Learn more about the process here.

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