Huntington’s Disease Caregiver Resource Guide

See accompanying video, Huntington’s Disease Caregivers: You’re Not Alone.

Emotional Support

• FCA Grief and Loss
  https://www.caregiver.org/resource/grief-and-loss/

• FCA Holding a Family Meeting
  https://www.caregiver.org/resource/holding-family-meeting/

• FCA The Emotional Side of Caregiving
  https://www.caregiver.org/resource/emotional-side-caregiving/

• HDSA Caregiver Services and Resources
  https://hdsa.org/find-help/community-social-support/caregiver-services-and-resources/

• HDSA Suicide Prevention
  https://hdsa.org/find-help/clinical-care-services/suicide-prevention/

• HDSA Support Groups
  https://hdsa.org/find-help/clinical-care-services/suicide-prevention/

• HDSA Talking With Kids About HD
  http://hdsa.org/wp-content/uploads/2015/05/TWKBrochure-FINAL-WEB.pdf

• HDSA Telehealth
  https://hdsa.org/find-help/community-social-support/hdsa-telehealth/
  Free program to connect HD community with qualified HD knowledgeable mental health therapists.

Community Resources

• AARP Family Caregiving How-To Video Series
  https://www.aarp.org/ppi/initiatives/home-alone-alliance/family-caregiving-videos/

• Eldercare Locator
  https://eldercare.acl.gov/Public/Index.aspx
  A public service to connect individuals to community services for older adults and their families.
  Helpline 1-800-677-1116

• FCA Caregiving at Home: A Guide to Community Resources
  https://www.caregiver.org/resource/caregiving-home-guide-community-resources/

• FCA Family Caregiver Services by State
  https://www.caregiver.org/connecting-caregivers/services-by-state/?state=national
  Online tool to help family caregivers locate public, nonprofit, and private programs and services.
• FCA Hiring In-Home Help article
  https://www.caregiver.org/resource/hiring-home-help/

• FCA Residential Care Options: Five Tip Sheets
  https://www.caregiver.org/resource/residential-care-options-five-tip-sheets/

• HDSA Locate Resources in Your Area
  https://hdsa.org/about-hdsa/locate-resources/

• I Have HD Card
  http://hdsa.org/wp-content/uploads/2015/05/HDSA-LET-I-Have-HD-ID-Card.pdf

• VA Caregiver Support Program
  https://www.caregiver.va.gov/

Legal and Financial Planning

• FCA Legal Planning for Incapacity
  https://www.caregiver.org/resource/legal-planning-incapacity/

• National Academy for Elder Law Attorneys
  https://www.naela.org/
  Consumer resource directory for individuals to find elder and special needs law attorneys.

Research

• HDSA Trial Finder
  https://hdsa.org/hd-research/hd-trial-finder/

• Research and Trials: HD Buzz
  https://en.hdbuzz.net/

Need More Info?

• Search our extensive library of resources under All Resources on our website.
• Sign up for CareNav™, a free online dashboard (+ customized resources) for family caregivers.
• Need additional help? Contact us info@caregiver.org or 800.445.8106.

Multiple Languages
Many FCA resources, including some above, are available in Spanish, Vietnamese, Chinese, Tagalog, and/or Korean.

Visit Our Website, Email, or Call Today
www.caregiver.org | info@caregiver.org | 415.434.3388 | 800.445.8106

For more than 40 years, Family Caregiver Alliance has worked to improve the quality of life for family caregivers and their care recipients through services, education, advocacy and research. We support and assist caregivers of adults with chronic or disabling health conditions regardless of race, ancestry, national origin, creed, gender, gender identity, religion, sexual orientation, disability, income, or age.

This guide was underwritten with funding from Adira Foundation with additional support from other generous donors and produced by Family Caregiver Alliance.