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Caregiving

Caregivers play a big role in the health and well-being of their loved ones — often while juggling their own jobs, families, and needs. The following resources can help you take care of yourself, connect with other caregivers, and find tools for success.

Please visit our FINDING SUPPORT page to connect with advocacy organizations that support people living with frontotemporal degeneration (FTD).

Family Caregiver Alliance

The Family Caregiver Alliance (FCA) is an advocacy organization committed to improving the lives of family caregivers and the people who receive their care. It offers these resources:

  • Articles, factsheets, webinars, videos, and online courses about family caregiving. All are listed in the FCA Learning Center.
  • The Family Care Navigator which helps caregivers find public, nonprofit, and private programs and services by state.

Icare PRogram

The iCare Program, funded by the National Institute on Aging, helps caregivers of people with memory problems manage stress and improve their well-being. 

Weill Institute for Neurosciences

The University of California, San Francisco's Weill Institute for Neurosciences is a medical center dedicated to the diagnosis and care of people with degenerative brain diseases. Its website offers:

  • An information page on caregiver well-being with tips to improve health and deal with common emotions.
  • The Conversations with Caregivers video series that offers advice from real family caregivers who care for people with dementia. Some of the videos are available in Spanish.

American Association For Retired Persons

The American Association for Retired Persons (AARP) is a nonprofit organization that empowers people to choose how they live as they age. Its website has materials for caregivers, including:

  • A guide titled, "Prepare to Care: A Planning Guide for Families (PDF)."
  • A list of recommended apps to get organized or find support. 
  • A toll-free hotline with resources on financial issues, home care, legal issues, and more. Agents are available Monday-Friday, 7:00 a.m. to 11:00 p.m. ET at 877-333-5885. The support line is also available in Spanish at 888-971-2013.

Caregiver Action Network

The Caregiver Action Network is a nonprofit organization that works to improve the lives of Americans who care for loved ones. It offers caregiver resources, such as:

  • A Family Caregiver Toolbox with videos, guides, and other resources.
  • A Caregiver Help Desk, staffed by caregiving experts who are available Monday-Friday from 8:00 a.m. to 7:00 p.m. ET. Contact the Care Support Team via telephone at 855-227-3640, email, or online chat.

Eldercare Locator

Eldercare Locator, a public service of the Administration on Aging, is a free nationwide service that helps caregivers find local support resources. It offers the following:

  • Useful links and resources based on common questions (called Caregiver Corner).
  • Specialists available Monday-Friday from 9:00 a.m. to 8:00 p.m. ET to answer questions about caregiving and local resources. Connect by telephone at 800-677-1116, email, or online chat.

 

** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.