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Caregivers are the unsung heroes of ALS. Often, they're so busy supporting their loved one, their own physical or mental health takes a back seat. That’s why ensuring caregivers in the ALS community receive the support and assistance they need is critical.

“Our caregivers are imperative to the care of someone living with ALS,” says Leslie Ryan, our Vice President of Community and Professional Education. “And our caregivers aren't always just an adult spouse, or care partner. They are oftentimes children, or they are the parent of someone who is diagnosed, or the friend of someone who is diagnosed. And so, understanding the different dynamics of groups of caregivers is really important, and the many needs that they all have.”

In a 2021 ALS Focus survey, we learned 68% of ALS caregivers said they spent more than 30 hours per week providing care to their loved one and almost ½ of caregivers said that they felt unprepared for changes in caregiving responsibilities as ALS progresses.

One out of four people living with ALS and caregivers said that they had to borrow money or go into debt because of their ALS treatment or to provide caregiving, respectively and 44% of ALS caregivers cited depression as a top concern.

Since the Ice Bucket Challenge, we’ve been able to provide new and innovative resources to help, and continuing to build on that progress is a key priority for us.

We developed The ALS Association Caregiver Education Course, available to all caregivers free of charge. This online course was created with guidance from people who have lived the role and who have shared their journeys in hopes they can make the path easier for future caregivers.

We launched ALS Care Connection, a private online calendar tool designed to support families impacted by ALS by organizing volunteers to help take care of some of the daily tasks that families describe as "falling through the cracks." This provides an opportunity for friends and loved ones to support families impacted by the disease, so caregivers don’t always have to “ask” for help.

We also help to alleviate their burden by providing information and in-depth resources about caregiving, support groups for caregivers of people living with ALS, practicing self-care, and coping with burnout. We’ve provided financial grants for respite care and sharing stories and advice from other caregivers helps to calm feelings of loneliness and isolation.

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While collectively these resources are helpful, they only scratch the surface of what our caregivers need. Supporting legislation like the Elizabeth Dole Home Care Act and lobbying for additional funding on the federal and state levels to help support our home caregivers with access to affordable professional in-home care is underway. Greater access to affordable in-home care will help ease some of the burden caregivers endure, ensuring the needs of families impacted by ALS are addressed.

“Moving forward, I would really like to see caregivers getting more front-and-center attention for the work that they do,” says Leslie. “And caregivers, many times, are still working. Caregivers can be kids. Caregivers can have their own health issues, and caregivers need that support and attention from our insurance companies, our policymakers, our health care system, because they are a key component in the care of someone living with ALS.”

We still need more support for family caregivers. 
We still need a cure. 
Let’s see it end. 

To learn more about how you can get involved and become an ALS advocate today, visit our website here.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.  

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