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For Caregivers


Help for ALS Caregivers

Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests.


Family Caregiving

 When a Loved One Has ALS

View our Caregiving brochure - When a Loved One Has ALS

Primarily, caregiving is provided by family members.  Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress.  The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.

Caregiving Statistics

  • Nearly 53 million people in the United States provide care to a chronically ill, disabled, or aging family member or friend during any given year.
  • Caregivers spend an average of 24 hours per week providing care for their loved one.
  • 61% of all caregivers in the United States are female, and the average age of a caregiver is 49.
  • 51% of caregivers feel their role has given them a sense of purpose or meaning.
  • One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent).

All data, unless otherwise cited, is from the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US Survey.

For additional information and resources, visit

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Caregiver Boot Camp Program

Caregiver Boot Camps are designed to inform about the role of a Caregiver, teach how to use common pieces of medical equipment, and provide an opportunity to ask questions to better prepare you in assisting your loved one living with ALS.

Learn More >>

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Together is Better - Virtual ALS Caregiver Support Group

A virtual group for current and past ALS caregivers specially designed to address the unique needs of those caring for someone with ALS.  The purpose of this group is for sharing information, insight, advice and encouragement in a safe space.

This group will meet on the second Wednesday of every month, beginning on May 13, 2020, from 7:00pm to 8:30pm.  You may access this virtual group using this link, or by calling 312-626-6799 and using Meeting ID 82769554399 and Password 425109. For questions regarding the program, please reach out to Kellie Branch-Dircks, MSW, LCSW, at 309-696-7184 or