Caregivers encounter many challenges in supporting their loved one with ALS, some of which include the new experience of understanding how to provide assistance for physical limitations affecting mobility, swallowing, speaking, and breathing. Cognitive issues, including a diagnosis of frontotemporal dementia, present an extra layer of difficulty in providing care. A May 2020 article by AARP writes the following about caregiver burnout:
An ALS diagnosis impacts every aspect of caregivers’ lives as they adjust their efforts to meet ongoing work, family, personal and financial obligations, which change as the disease progresses.
The ALS Network provides various resources to empower and help address the daily issues you may experience in your critical work as a caregiver. We want to honor you and the vital support you provide to those who need it most. Please check out these ALS Network resources below.
- More than half of caregivers (59.8%) experience high caregiving strain, as measured by the Zarit Burden Interview Screening. About a third of caregivers (36.7%) are somewhat or very dissatisfied with the amount of support received from family and friends. (Source: The CCRC Evaluation 2022 Annual Report).
- Most (55%) of caregivers reported at least one medical condition; of these, the most prevalent were sleep disturbances (32.7%), depression (31.6%), and chronic pain (22.9%).
Support for the Family
Coping with a loved one's diagnosis of ALS can be especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones. The ALS Network is here to ensure that no one, big or small, is alone when facing ALS, and to offer many tools and resources for our ALS community.
ALS Caregivers: You're Not Alone
The ALS Network was pleased to collaborate this year with the Family Caregiver Alliance on the creation of a video that is specific to providing information and support for ALS family members and caregivers. Please find the video here and know that you are NOT alone in managing the challenges of this disease.
Caring for Caregivers: Our Deepest Gratitude
In recent years, donors with a deep recognition of the significant issues facing family caregivers have stepped up to support ALS Network’s programs and novel initiatives designed to provide vital and transformative support to caregivers living with a loved one diagnosed with ALS. We are so grateful to the Morris Family Caregiver Initiative and Ron Malone Care Services Fund for supporting our essential programs and services for caregivers. These are just two examples of how the generosity of those served by ALS Network has translated into meaningful support for other caregivers throughout our service area. Please consider making a gift today in support of the mission of the ALS Network!
ASK ME: ALS from the Caregiver’s Perspective
In honor of National Family Caregivers Month, see our ASK ME educational webinar, “ALS from the Caregiver’s Perspective” featuring Mari Fuentes, who cared for her husband, filmmaker Anton Maillie, and Trish Rice, who cared for her son, writer and poet Ryan Farnsworth.
To see our library of webinars, please click here.
High Impact Priority Quality of Life Grant
The ALS Network offers small grants to support respite care for families living with ALS throughout California and Hawaii. This provides a much needed short-term break so that family members and caregivers can replenish and recharge. Please contact your care manager for more information on this program.
Building Better Caregivers
In honor of National Family Caregivers Month, find support from other caregivers managing the challenges of caring for a loved one. Building Better Caregivers (BBC) is a free 6-week online workshop developed by Stanford University to support caregivers of Veterans of all eras. BBC brings together a community of caregivers to learn new ways to manage stress, improve communication and give and receive support in a safe and secure small group environment facilitated by trained leaders. Learn more at their website.
Medicare Coverage for Home Health Aide Care
Medicare coverage can help older adults and people with disabilities obtain necessary home care. When individuals meet the home health benefit criteria, Medicare-covered care can include home health aide services. As defined by federal law, home health aides provide hands-on personal care, including assistance with activities of daily living. This care is often critical to a person's health, safety, and ability to remain at home. Learn more from this fact sheet provided by the Center for Medicare Advocacy.