General Caregiver Resources
Helplines
- AARP Caregiving Helpline/Assistance (Phone #): 877-333-5885
- Family Caregiver Alliance Helpline/Assistance (Phone #): 800-445-8106
- Well Spouse Association (Phone #): 800-838-0879
- ARCH National Respite Network and Resource Center: 919-490-5577
- Family Caregiver Toolbox by the Caregiver Action Network. For inquiries and assistance, call 202-454-3970.
Community
- To connect with other caregivers: visit Connecting with Caregivers by the American Psychological Association.
- To coordinate meals and help for friends and family: Lotsa Helping Hands
Information
- Guide and Checklists for Family Caregivers: Next Step in Care
- For financial, legal, and insurance issues: Call the Medicare Rights Center at 800-333-4114 for information about Medicare and how to claim insurance; call Patient Advocate Foundation at 800-532-5274 for more information on how to ensure the person you are caring for is receiving the best resources possible.
Alzheimer’s Disease and Related Dementias Caregiver Resources
Helplines
- Alzheimer’s Association 24/7 Helpline: 800.272.3900 (for information and resources in 200+ languages).
- The Live Chat on the Alzheimer’s Association page also is a resource to ask questions.
- Inquiries Form provided by the Alzheimer’s Association that will respond within 24 hours.
Community
- https://alzconnected.org/ - an online support group for people living with dementia or related health issues and people who care for them.
Information
- Information about wandering (a big risk for people with memory loss or related symptoms)
Ataxia Caregiver Resources
Helplines
Community
- Parents of Kids with Ataxia support group on Facebook
- Ataxia Spouses and Partners support group on Facebook
Information
- Coffee Chats via Zoom for information and a sense of community
- National Ataxia Foundation (NAF) YouTube Channel with Webinars
Dystonia Caregiver Resources
Huntington's Disease Caregiver Resources
Helplines
- HDSA Helpline at 1-880-345-HDSA (1-800-435-4372), which is available Monday through Friday from 9 am - 5 pm EST.
- HDSA Email Helpline: HDSAinfo@HDSA.org. Responses might take up to 2 business days.
Community
- Hey Peers: The Huntington's Disease Society of America (HDSA) uses this platform to provide an online HD support group.
Information
- A Caregiver Guide for HD Families: a guide to help caregivers better understand the issues, behaviors, and situations that most impact family caregivers.
- General resources for Huntington's Disease with an email for inquiries and information about support online: https://www.hdyo.org/c/1-get-support-resources
- HDSA National Youth Alliance: an email list to sign up for if you know someone with HD who has children and want to learn how to explain HD to them.
- HDSA Resource Library for more information about HD and other tips.
- Family Education Days hosted by local HDSA Chapters. This could also be a good way to meet other people affected by HD in your community.
- HDSA YouTube Channel with quick videos on a variety of topics.
Multiple System Atrophy/Autonomic Disorders Caregiver Resources
Helplines
- Patient Support Line for patients with MSA: 866-737-5999. The line is staffed from 9 AM to 5 PM EST, Monday through Friday. Voice messages are encouraged if you do not get a response immediately.
- Mission MSA Patient Support Scheduler to arrange virtual meetings or phone calls with the Patient Support Services Manager.
Community
- MSA Coalition with local and regional support groups and a Facebook page where people can interact with each other.
Information
- Mission MSA Resource Library: for digital and downloadable resources including videos, infographics, brochures, and more.
Parkinson's Disease Caregiver Resources
Helplines
- Parkinson’s Foundation Helpline (Phone #): 1-800-4PD-INFO (1-800-473-4636). Helpline specialists can assist you in English or Spanish, Monday through Friday, 9 AM to 7 PM EST.
- Parkinson’s Foundation Helpline (email): Helpline@Parkinson.org
Community
- PD Conservations: a place for caregivers to ask questions and connect with others living with the disease who want to be part of a network of support.
- American Parkinson Disease Association Virginia Chapter, resources, supports groups, and webinars programs
Information
- Parkinson’s Foundation: A website with information for caregivers in each step of their experience with helping someone with Parkinson’s disease.
- Caring and Coping: A Care Partner’s Guide to Parkinson’s Disease: Tips and tools to help prepare caregivers (~180 pages)
- Medicare and Parkinson’s: What you Need to Know
- Power Over Parkinson's Care Partner Education Resources
- American Parkinson Disease Association (APDA) Local Resources, Support and Events
Progressive Supranuclear Palsy and Corticobasal Syndrome Caregiver Resources
Helplines
- Hope Line: 800-457-4777 or email at info@curepsp.org or fax at 410-785-7009
Community
- Featured Personal Stories of families who have experienced the journey of PSP to help create a community for people to share their stories.
- CurePSP Forum: a place to find support within communities of patients, families, and carepartners.
Information
- CurePSP Audiobook Library for information on PSP, CBD, and MSA
- CurePSP Brochure Catalogue: a digital resource liberty where you can also order patient and family information packets.