Four Ways Caregiver Action Network Empowers Families

This month’s blog features the Caregiver Action Network.

While we caregivers know that every day is caregivers’ day, November is recognized as National Family Caregivers Month — where we pause to recognize and honor the 63+ million family caregivers across the United States who devote their time, energy, and love to supporting a family member or friend with health needs.

On the blog this month, we at SimpliHere had the opportunity to connect with Nichole Goble, Director of Community Initiatives at Caregiver Action Network (CAN), the nation’s leading family caregiver nonprofit based in Washington DC. CAN works to improve the quality of life for tens of millions of family caregivers and those meeting the living needs of older adults and has led the annual recognition of National Family Caregivers Month for almost 30 years.

Nichole, who mentioned that everyone on staff at CAN is either a current or former caregiver, manages CAN’s caregiver engagement programs, including the 3,000-member Caregiver Action Network Community Facebook group, caregiver Roundtables, health condition-specific resources, and educational webinars. Nichole works directly with caregivers nationwide, helping them connect, find resources, and advocate for themselves and their loved ones. Here what Nichole had to share.

How did the Caregiver Action Network get started?

Caregiver Action Network was founded in 1993 by caregivers who understood something the country was only beginning to acknowledge: caregiving is not an isolated family matter — it is a national public health and economic issue. The founders had lived the experience of balancing jobs, health crises, and caregiving responsibilities, often without guidance or support. What united them was their belief that every caregiver deserves education, resources, and community — free of charge.

That conviction still shapes our mission today. CAN is dedicated to improving the quality of life for the tens of millions of family caregivers in the U.S. through education, peer connection, and advocacy.

Can you give us a brief overview of how the Caregiver Action Network directly supports caregivers?

In my role as Director of Community Initiatives, I see every day just how comprehensive and responsive CAN’s support ecosystem has become. We meet caregivers where they are through:

1. Condition-Specific Resource Hubs: Hubs for Alzheimer’s, Parkinson’s, ALS, Huntington’s, Myasthenia Gravis, stroke, cancer, kidney disease, long COVID, rare diseases, and more — each offering clear, compassionate guidance. You can search our Family Caregiver Toolbox by disease and condition, and we have recently added more through our Plug-in to Care Hub created for National Family Caregivers Month.
2. Peer Community Spaces: Our private Caregiver Action Network Community Facebook group — now surpassing 3,000 caregivers — offers 24/7 connection, shared experiences, and mutual encouragement. For caregivers who prefer a more personal, one-to-one emotional outlet, we also offer access to Kindly Human, a confidential peer-support platform where caregivers can talk with someone who understands their challenges.
3. Caregiver Help Desk: One of the most important supports we offer at CAN is our National Caregiver Help Desk — a free, easy way for caregivers to get real-time guidance by phone, email, or live chat. Our experts help families navigate the questions that often feel overwhelming: understanding a new diagnosis, exploring care options, figuring out what to ask a doctor, or locating local resources. Caregivers don’t need to know exactly what they’re looking for — the Help Desk is designed to meet them where they are and help them get oriented. Many caregivers tell us that reaching out feels like “finally having someone in my corner.” At its core, the Caregiver Help Desk reflects our belief that no caregiver should feel like they have to figure everything out alone.
4. We also offer Caregiver Roundtables, which are small-group discussions where caregivers share strategies, fears, and victories with others who truly understand; webinars and workplace trainings, where we partner with organizations and employee resource groups to help employers better support caregiving employees; and other practical tools and guides, like HIPAA explainers, medication tracking tools, communication templates, and more. Caregivers often tell us these resources become lifelines during their most overwhelming moments.

What do you love about the support CAN provides caregivers?

The message I hear over and over from caregivers who contact CAN is “I finally feel understood.” Many caregivers don’t even identify with the word “caregiver” at first — they’re simply being a daughter, partner, or parent. But once they connect with CAN, they realize they are part of a larger community of people navigating similar challenges.

Caregivers tell us they value feeling seen and validated, receiving practical, actionable tools, finding peers who “get it,” and walking away from a webinar or Roundtable with a strategy they can use immediately. Those moments of relief and recognition are what I love most about this work.

Can you share some of the most recent advocacy efforts you’ve been working on?

Our advocacy efforts elevate caregiver voices and advance policies that meaningfully impact their lives. Recent work includes protecting and expanding respite services, an effort that is essential for caregivers who are managing around-the-clock care; promoting legislation and funding that increase access to counseling and crisis resources to support mental health for caregivers; advocacy to ensure stability and protect continuity for families amid federal program changes as Medicaid, Medicare, and HCBS programs shift; and raising national awareness during National Family Caregivers Month! We are partnering across sectors to amplify caregiver stories and drive systemic understanding.

Behind every policy discussion is a real family trying to do their best under challenging circumstances — that’s who we advocate for.

How are you supporting caregivers throughout interruptions and changes in federally funded programs?

Program shifts and interruptions can be deeply destabilizing for caregivers. To support them, CAN provides timely webinars breaking down what changes mean, roundtable discussions where caregivers can ask questions in real time, practical checklists and scripts for speaking with agencies, insurers, and case managers, advocacy efforts directed at maintaining essential support systems, and peer spaces where caregivers can learn from others experiencing similar challenges. Our goal is to help caregivers feel prepared, informed, and supported — never alone or in the dark.

How have you helped caregivers supporting loved ones with neurodegenerative conditions like Alzheimer’s disease, ALS, and stroke?  

Neurological and neurodegenerative conditions create unique emotional, behavioral, and logistical complexities for families. Caregiver Action Network supports these caregivers through a combination of practical tools, education, and emotional connection. Here are some of the key resources we offer for caregivers of individuals with neurodegenerative conditions:

• Alzheimer’s & Neuropsychiatric Symptoms: Our Navigating Alzheimer’s hub provides in-depth guidance on behavioral symptoms, safety concerns, communication strategies, and caregiver wellbeing. It’s designed to help caregivers understand and respond to neuropsychiatric symptoms with confidence and compassion.
• ALS Caregiver Resources: CAN’s ALS Caregiver Resources Hub offers guidance on equipment needs, mobility and communication changes, respiratory support, and preparing for disease progression — in ways that are straightforward and supportive.
• Stroke Caregiver Resources: Our Stroke resources focus on rehabilitation, transitions of care, home safety modifications, communication challenges, and the emotional toll caregivers often experience during recovery.
• Community Spaces: Our condition-specific Roundtables and the Caregiver Action Network Community Facebook group give caregivers a space to talk openly with others who understand the nuances of neurological conditions — from coping with behavioral changes to grieving the “before” version of their loved one.

What are some of the most effective support tools that caregivers in your network rely on?

Across our community, the tools caregivers consistently find most valuable include printable toolkits and step-by-step guides; the Caregiver Action Network Community Facebook group, offering peer support and shared wisdom, care planning worksheets; communication templates for medical visits and tough conversations; our Families, Addiction & Mental Health Network and Lighting Your Way resources; and Help for Cancer Caregivers, a comprehensive guide co-developed with partners. Caregivers often tell us these tools “live on the fridge” or travel with them to every appointment.

How does the Caregiver Action Network advise/help caregivers select tools and technology options?

Choosing technology can feel overwhelming, so we guide caregivers to evaluate tools with two primary questions. The first is, “does this make caregiving easier, safer, or less stressful?”  Examples of this type of technology might include fall detection systems, GPS trackers, smart medication dispensers, and home monitoring devices. The second question is, “Does this fit the caregiver’s comfort level, budget, and daily routine?”

Caregivers don’t need the most high-tech solution — they need the right one. We also emphasize education around care coordination apps, shared calendars, and digital health tools, and in-home safety technology that supports aging in place. Our goal is to empower caregivers to choose technology that supports — not overwhelms — their care journey.

I bet there are a lot of caregivers out there who are grateful for Caregiver Action Network and the services you provide. Can you share any of that feedback?

Yes, and there is one testimonial drawn from real themes in our Roundtables and Facebook community that I think your readers will appreciate. M., and ALS caregiver, shared the following message:

“When my husband was diagnosed with ALS, I felt like the ground disappeared beneath me. CAN helped me steady myself again. The resources explained what changes to expect, and the Facebook community reminded me that I wasn’t alone. CAN gave me back a feeling of control — and hope.”

A huge thanks to Nichole for sharing her experience and information about Caregiver Action Network’s exceptional caregiver resources and tools. Click here to learn more or contact Caregiver Action Network today.  

About SimpliHere

The mission of SimpliHere is to ensure efficient care and peace of mind for caregivers and their patients with neurological conditions that impact communication and mobility. Joanna Rosenberg founded SimpliHere to address communication gaps between caregivers and patients. Her personal experience when her mother lived with ALS exposed the challenges of communicating and understanding basic needs, as well as managing daily tasks. Download SimpliHere today!