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How to Use Social Media for Dementia and Parkinson’s Organizations: A Friendly Guide

You’re running a dementia or Parkinson’s organization, juggling education, support, and caregiving services with the overwhelming task of managing social media. No easy feat, right? The good news is, it doesn’t have to be complicated or feel like a corporate slog. We’re breaking it down for you with an easy-to-read guide.


No time to read? Here's what you need to know:


If you're short on time, here’s a quick recap to help you master social media for your dementia or Parkinson's organization.

Know Your Audience: Tailor content for caregivers, patients, and supporters.

Choose Your Platforms: Focus on Facebook, Instagram, or YouTube.

Content Ideas: Share tips, real stories, and behind-the-scenes moments.

Be Consistent: Aim for three posts a week, and use scheduling tools.

Engage Your Community: Respond to comments and ask for feedback.

Make Content Accessible: Use alt text, large fonts, and simple language.

Collaborate Locally: Tag partners, share events, and team up for posts.

Get Personal: Share relatable, real-life moments to connect with your audience.

Track Your Success: Check engagement, reach, and growth—no need to overdo it.


Whether you’re from a local group like AGE of Central Texas or a national player like the Michael J. Fox Foundation, you’ll find this guide is made just for you. It’s all about connecting with people who need your help, showing off your amazing services, and building a community.

Let’s dive into a few key strategies that will help you maximize your social media presence, even if your organization isn’t swimming in resources like some mega-hospitals.


 

1. Know Your Audience

Sounds obvious, but you’d be surprised how easy it is to miss the mark. The people following your organization’s social media aren’t just random users—they’re caregivers, patients, and families looking for support, resources, and maybe even a laugh to lighten their day.

Key Groups to Focus On:

  • Caregivers: They need practical advice, coping strategies, and validation that they’re not alone in this journey.

  • Patients: Look for gentle, reassuring content that empowers them and improves their quality of life.

  • Community Members: Those who support the cause but aren’t directly affected. They might donate, volunteer, or spread the word.

Pro Tip: Post content that speaks directly to each of these groups. One size doesn’t fit all here.


If you’re feeling overwhelmed or unsure where to start with your social media strategy, you’re not alone. 


We understand how tough it can be to balance everything. That’s why we offer free or sliding scale strategy sessions to help you create a social media plan that fits your organization’s unique needs. We’re here to support you—no pressure, just solutions that work for you.


 

2. The Right Platforms for the Right People

When it comes to social media, you don’t have to be on every platform. In fact, you probably shouldn’t be. Focus on where your audience hangs out.

The Big Three:

  • Facebook: A goldmine for community building. Older adults and caregivers are here looking for groups, advice, and support.

  • Instagram: Great for visual storytelling—use it to share real stories of resilience, tips, and inspirational quotes (no, not the cheesy kind).

  • YouTube: Perfect for educational content. Parkinson’s exercise videos, caregiver how-tos, or expert interviews? This is your place.

Pro Tip: You don’t need to be everywhere. Choose one or two platforms and do them really well.


 

3. Content Ideas for Your Organization

Coming up with content doesn’t need to be overwhelming. Here's a list of ideas that are proven to engage people in your community.

Listicle Magic:

  • Top 5 Tips for Caring for a Loved One with Dementia

  • 3 Exercises Anyone with Parkinson’s Can Do at Home

  • The 10 Most Common Questions We Get About Memory Loss

Storytelling:

  • Share real-life stories of people managing dementia or Parkinson’s and how your organization helped.

Behind-the-Scenes:

  • Give your audience a peek into your day-to-day. Show your staff, your office, your events, even the coffee that fuels you. Humanize your organization.

Infographics:

  • Share bite-sized info like the stages of dementia, how to join your support group, or easy exercise routines for those with Parkinson’s.

Pro Tip: Don’t overthink it. People just want content that feels relevant, useful, and sometimes a little heartwarming.


 

4. Stay Consistent (But Don’t Burn Out)

It’s better to post a few times a week consistently than to flood your feed and disappear for months. If you’re a small organization, aim for three posts a week. You can always ramp up later.

Easy Content Scheduling Tips:

  • Batch-create content: Set aside one day a month to create a bunch of posts.

  • Use scheduling tools: Hootsuite, Buffer, or Later can help you queue posts so you’re not doing this every day.

Pro Tip: Plan ahead for big awareness days, like World Alzheimer’s Day or Parkinson’s Awareness Month.


 

5. Engage, Don’t Just Broadcast

Posting on social media is only half the battle. The real magic happens when you engage with your audience. Reply to comments, answer questions, and make people feel heard.

How to Do It:

  • Ask for feedback: "What’s been your biggest challenge this week as a caregiver?"

  • Run polls: "Which topic should we cover next—exercise for Parkinson’s or meal planning for dementia patients?"

  • Share user-generated content: If someone tags you in a post, share it on your feed. People love seeing their contributions acknowledged.

Pro Tip: Social media is about community, not just promotion. Be a friendly voice, not just a megaphone.


 

6. Make It Accessible

Your audience includes older adults, caregivers, and potentially people living with disabilities. Make your social media content easy to access and understand.

A Few Accessibility Musts:

  • Use Alt Text: Describe images for those using screen readers.

  • Keep Fonts Large: Especially if you’re sharing images with text.

  • Keep it Simple: Avoid jargon or overly complex language. If you can’t explain it in one sentence, you’re trying too hard.

Pro Tip: If you can make your social media content clear and accessible, you’re already ahead of the game.


 

7. Leverage Local Partnerships

You’re probably already working with some local groups, right? Leverage those relationships on social media.

Here’s How:

  • Collaborative Posts: Team up with other dementia or Parkinson’s organizations for shared content.

  • Tag Partners: Mention local healthcare providers, caregivers’ groups, or other support networks.

  • Cross-promote Events: Got an upcoming community event? Collaborate with your partners to promote it across social media.

Pro Tip: Strengthening local ties doesn’t just help with exposure—it boosts credibility, too.


 

8. Don’t Be Afraid to Get Personal

People connect with people, not faceless organizations. Let your social media show some personality.

Fun Ideas to Try:

  • Share your staff’s favorite dementia caregiving tip.

  • Post a throwback photo of your first day working in the field.

  • Share behind-the-scenes bloopers from events. People love seeing the real, unfiltered side of things.

Pro Tip: Keep it light, real, and relatable.


 

9. Track What’s Working (Without Going Overboard)

You don’t need to dive into data analytics every day, but tracking what works will save you a ton of effort. If a certain post gets a lot of love, do more like it. If a post flops, take note and adjust.


What to Track:

  • Engagement: Comments, shares, and likes tell you what resonates with your audience.

  • Reach: Are more people seeing your posts over time? That’s a good sign.

  • Growth: Keep an eye on how your following grows, but don’t obsess over it.

Pro Tip: Monthly check-ins on your metrics are enough. Don’t let data stress you out.



Still unsure how to get started? We get it. Running a social media strategy while providing life-changing support is a tough balance. That’s why we offer free or sliding scale consultations tailored to your organization’s needs. Let’s work together to build something that makes a difference—no hard sell, just here to help. Reach out whenever you’re ready.

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