As many can attest, being the primary caregiver for a loved one with ALS can be both challenging and stressful. Not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job. Often, caregivers are so busy supporting their loved ones that their own physical or mental health takes second priority.
In the spring of 2021, ALS Focus surveyed over 600 current and past ALS caregivers about their needs and wellbeing and the findings were truly enlightening. For example:
- 68% of ALS caregivers said they spent more than 30 hours per week providing care to their loved one.
- Almost ½ of caregivers said that they felt unprepared for changes in caregiving responsibilities as ALS progresses.
- Costs for medical treatment and services topped the list of stressors for people with ALS and their caregivers.
- 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.
- 44% of ALS caregivers cited depression as a top concern.
But as a caregiver, it’s important that you get the support and assistance you need so you can care for your loved one to the best of your abilities. For this reason, The ALS Association makes it a priority to provide critical resources, such as education and support groups, for caregivers and people living with ALS and we do our best to ease and alleviate the burdens of ALS for patients and their families.
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.
- Local Care Services - The Association’s nationwide network of chapters provides comprehensive programs and services for people impacted by ALS. Contact the chapter nearest you for access to local resources and professionals to assist you.
- Support Groups - Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness.
- ALS Association Certified Treatment Center & Clinics - The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices.
- Books, videos, and other ALS Association produced educational materials - We provide various resources so that you can quickly and easily access in-depth information about ALS.
- Products and services that can aid ALS patients in daily living - The materials and web sites referenced and/or linked from the ALS Association Web site are provided for information purposes.
- Care Services Webinars – Live and recorded webinars provide disease education, symptom management strategies and much more.
- ALS Care Connection - ALS Care Connection is a private online calendar that can be used to support to the entire family – by organizing volunteers to take care of some of those tasks families describe as "falling through the cracks.
- Care Matters – New quarterly E-Newsletter designed to provide the latest updates and information about ALS care.
To learn more about ALS and find additional resources to help, visit ALS.org. And if there are additional resources you feel should be included on our site, please contact us here.
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Download this infographic about caregiving and share on your social platforms to support a caregiver you know.
ALS Primary Caregiver since 2015.
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