When someone you know or love becomes a caregiver, their whole world changes. Much, if not most, of their time and energy goes toward managing appointments, navigating complicated systems, dealing with stress, and simply trying to make it through the day. Their life no longer feels fully their own.

Through my work as a dementia and caregiver advocate, I’ve had the privilege of connecting with many different types of caregivers. One thing that comes up often in those conversations is how badly they want to advocate politically for themselves and their loved one, but the bandwidth just isn’t there. They are already carrying so much.

As someone fortunate enough to have strong support at home, I’ve made it my mission to advocate not only for my own family, but also for those who simply cannot do it themselves right now. Once I saw firsthand what families were experiencing on this journey, I couldn’t unsee it. I realized that just complaining about the gaps in our systems wasn’t enough. Something had to be done.

What many people don’t realize is that advocacy becomes yet another responsibility added to a caregiver’s already overflowing plate. Speaking up, staying informed, calling representatives, following legislation, educating others and traveling to their state Capitol. All of it takes time, energy, and emotional capacity that many caregivers simply do not have.

This is where I love seeing friends and family step in in such meaningful ways. I talk about this in my book, The Unexpected Journey, because caregiving was never meant to be a solo mission. And advocacy is another way to support the caregiver or someone living with a disease. It tells them, I see this too. I care about this too. You are not carrying this alone.

Here are a few ways you can get involved on their behalf.

Follow the Organizations Doing the Work

One of the simplest and most impactful things you can do is follow the organizations connected to the disease your loved one is navigating. Sign up for newsletters, follow them on social media, and stay informed about research updates, legislation, awareness campaigns, and volunteer opportunities.

Many organizations make advocacy easy by providing email templates, petitions, talking points, and action alerts that only take a few minutes to participate in. Over time, this also helps you better understand what families in these communities are truly facing every day.

Volunteer Your Time

Volunteering is one of the best ways to learn, connect, and support a cause in a tangible way. Whether it’s helping at an awareness walk, assisting at a conference, joining a fundraiser, or supporting an event, you begin to understand the real needs within the community.

Contact Your Representatives

Caregivers can be too overwhelmed to keep up with policy and legislation. Friends and family can help by reaching out to local representatives and supporting bills connected to research funding, caregiver support, respite care, healthcare access, or disease registries.

You do not need to be an expert to make a difference. I know I certainly wasn’t when I first started. But sharing your personal story and heartfelt concern of what you are witnessing go a long way. Legislators need to hear that these issues matter to entire communities, not just individual families. Because here’s what I know to be true–every single one of us will either give care or need care one day. And by the year 2050, dementia cases are expected to triple. Our systems are already struggling to support these communities today, which is exactly why advocacy matters so much.

Right now, within our community, we are preparing for FTD Awareness Week in September. We are currently looking for residents in North Dakota and Utah to contact their representatives to help secure a resolution or proclamation in their state. If you live in one of these states, this could be an incredibly meaningful way to support not only your friend or family member walking the FTD journey, but also our an entire national community that simply wants to be seen, recognized, and understood.

If you’re interested in learning more, visit this link. 

Use Your Voice and Platform

Advocacy can be as simple as reposting educational information, sharing articles, amplifying awareness campaigns, or talking openly about the disease with others.

Many diseases remain misunderstood simply because people are not talking about them enough. Every conversation creates visibility. Visibility creates understanding. And understanding helps move research, support, and policy forward.

Attend Events on Their Behalf

Conferences, awareness walks, advocacy days, educational panels, and fundraising events can sometimes feel emotionally overwhelming or physically impossible for caregivers to attend. Consider going in support of them. Attend the event. Learn. Listen. Meet people in the community. Bring back information and resources they may not have had the energy to seek out themselves.

Help Build Community Around Them

Sometimes advocacy looks like organizing meal support, helping coordinate respite care, connecting families to resources, or introducing caregivers to support groups and trusted organizations. Caregivers spend so much time caring for everyone else that they often become isolated themselves. Community can change that.

Remember Small Actions Matter

You do not need to become a full-time advocate to make a meaningful impact. Small, consistent actions matter. Following the work, staying informed, sharing information, showing and speaking up. These things truly help families feel seen, supported, and understood. I can honestly say that being of service to others has become one of my greatest love languages.

And if you are wondering whether your voice or effort could really make a difference, let me assure you, it can. Caregivers remember the people who stepped in. The people who took the time to learn. The people who stood beside them and helped carry some of the weight.