Neurodegenerative Diseases
“If you’re looking for guidance on how to care for someone with a neurodegenerative disease, there’s not a lot out there,” says Leah Eskenazi, Operations Director at Family Caregiver Alliance of San Francisco. “Not only is there a shortage of information, there’s so much to learn—about treatment options, care planning, what’s covered by Medicare…the list goes on.”
Caregiver Needs
Eskenazi wanted to address this need for caregivers, so she led a team at FCA to create “You’re Not Alone,” a four-part video series on caregiving for individuals diagnosed with a neurodegenerative disease. The series covers:
- Amyotrophic Lateral Sclerosis (ALS)
- Huntington’s Disease (HD)
- Multiple Sclerosis (MS)
- Parkinson’s Disease (PD)
A One-Stop Resource for Family Caregivers of Individuals with Neurodegenerative Diseases
“With ‘You’re Not Alone,’” says Eskenazi, “we packed need-to-know information about family caregiving for each disorder in one video.” There’s guidance for every stage of each disease, along with essential resources and recommended contacts you’ll need along the way.
In each “You’re Not Alone” video, caregivers learn what to expect, how to prepare for their role, essential legal and financial preparations, and much more. The videos are accompanied by fact sheets and essential resources guides.
“It’s a great ‘one-stop’ resource caregivers can come back to again and again,” says Eskenazi.
Learn the Basics of Family Caregiving—From Experts You Can Trust
The “You’re Not Alone” video series was developed by FCA, one of California’s 11 Caregiver Resource Centers (CRCs). Since 1977, FCA has worked to support caregivers with counseling, care planning, financial and legal consulting, and more.
“We’ve leveraged over 40 years of expertise along with feedback from caregivers and provider organizations, to provide answers to caregivers who are looking for help,” Eskenazi says. She hopes the series will make life simpler for caregivers everywhere and help them understand they are never truly ‘alone.’
The “You’re Not Alone” video series was made possible by a generous grant from Adira Foundation with additional support from other valued donors. For more information about this or other family caregiving topics visit caregiver.org