Tips for Using Social Media to Help with Caregiving

Making a Connection

October 19, 2016

“I have spent many lonely, desperate nights online looking for more information that might create a change for us.”  – Pew Research

Family caregivers, searching for practical solutions to the challenges of helping those with Alzheimer’s disease or another dementia, are relying on the internet these days for much more than researching symptoms and finding services to come to their homes. They are wondering:

  • Where can I get reliable information?
  • Does anyone else feel the way I feel about caregiving?
  • How do others deal with the loneliness?
  • How do I deal with my stress?

At its core, social media is…. Social. It’s something we do together. So, it’s only natural many caregivers use social media to converse or to help find answers.

If you’re not, here are a few ways you can use some of the most popular social media networks to help make caregiving easier. There are scads of social communities for those who are looking for support or to learn more about Alzheimer’s disease and caregiving. The resources here focus on Alzheimer’s and related memory and thinking concerns, but you can find online groups for just about every caregiving situation you can imagine.

Let’s cover the basics: Facebook, Twitter, and Pinterest.

Social Media 101


Facebook is the best social media network for connecting with people you already know or finding resources from organizations. Every Alzheimer’s organization you can think of is on Facebook as well as just about everyone you know.

Since Facebook is ubiquitous, you can use it for research:

  • Alzheimer’s Association: The Alzheimer’s Association provides ALZ-related support across the US.
  • AlzLive: The online community for AlzLive, an organization dedicated to the caregivers of those with Alzheimer’s.

But finding friends who are interested in Alzheimer’s is also helpful. Use the search tool to find which of your friends like Alzheimer’s-related organizations.

People who like Alzheimers

You’ll get a list of related topics and be able to see which of your friends like the topics.

Here you can see I have friends who like The Alzheimer’s Association and at least one friend talking about Alzheimer’s. If you’re using Facebook as a research tool, you’ll probably start talking about the caregiving you’re doing as well. I know I did when I was a caregiver. Doing so is natural but you want to watch what you say. A few pointers I keep in mind on Facebook:

  • If you are providing caregiving support, there are probably a lot of people who know the person you are helping. Seeing the intimate caregiving details may put you in an awkward situation in the future.
  • Facebook can be used as a source of entertainment that distracts you from responsibilities. If you are only talking about caregiving every time you log on, it will cease to work as a distraction tool.
  • If you’re giving too many details or are too personal with what you discuss, you may end up alienating friends who may be predisposed to help you!


Twitter can help you parse through millions of people to find the people who are talking about the same topics. People often say Facebook is for the people you know, Twitter is for the people you want to know. Though I found several individuals I converse with on a regular basis, you’ll want to find your own people — people who are like you. Here are a few of the Alzheimer’s-related organizations I enjoy following:

You can also use Twitter to see what the conversation about Alzheimer’s is, right now. For example, here is a list of all the people who are currently talking about Alzheimer’s. Take a gander and see if you can find someone you want to meet.


Pinterest is great for the visual thinkers since everything is bookmarked by images. I don’t use my Pinterest account for anything related to Alzheimer’s but a LOT of people who do. So much so that Pinterest has a category devoted to Alzheimer’s.

There are also many users who have created boards dedicated to resources for Alzheimer’s:

We’ve talked about Facebook, Twitter, Pinterest, etc. There are millions of active users on social media networks and it’s likely you’re one of them. If you frequently use another tool, like Instagram, you might get value out of using it for Alzheimer’s research.

Are you ready to move beyond the basics? Read about why we developed our tool, Is clinical research right for us?