Below, you will find a collection of resources. While these are not the only resources available, we feel that providing a smaller collection can make the process of obtaining valuable information a bit less overwhelming. The goal is simple: Find the information you need as quickly and easily as possible in order to plan effectively, access support, and advocate for yourself and those you care for.
Education
Learn more about Frontotemporal Dementia
- NIH provides an overview
- The Association for Frontotemporal Dementia (AFTD) provides information about the behavioral variant, primary progressive aphasia, ALS, Corticobasal Syndrome, and Progressive Supranuclear Palsy
- The Association for Frontotemporal Dementia also provides information regarding genetics
Support Groups
Join a support group
- Keep in mind that traditional dementia support groups may be geared towards those living with Alzheimer’s Disease and their caregivers. You will find the most success seeking FTD-specific support groups
- The Association for Frontotemporal Dementia provides an easy-to-navigate directory of support groups by state
- Connect with the FTD community through the Remember Me Podcast
- While it isn’t a traditional support group, social media has connected many FTD caregivers. You may like to follow some of the following accounts to learn about others’ lived experience: thecaregivercomadre, ftd_silver_linings, ftdalovestory, and more.
Research
Learn more about opportunities to participate in research
- Some, but not all cases of FTD are genetic. This, and other aspects of FTD, are being researched.
- You can join the FTD Disorders registry
- You can check your eligibility for the ALLFTD study
- Clinical trials by State via the National Institute on Aging
- Clinical trials and studies by zip code via the US Department of Health and Human Services
- The Family Caregiver Alliance provides a list of clinical trials
Caregiver Respite Funds
Apply for or donate to funds that support caregivers
- What is respite care? via the Remember Me Podcast
- The AFTD provides Comstock grants
- Apply for a dementia home care grant through HFC® and Home Instead® (for residents of the US and Canada)
- The Caregiver Club has a Respite Initiative
- ARCH provides a list of respite services by state
Healthcare Decisions
Learn about navigating insurance and decision making
- The Conversation Project provides guides to support having conversations about end-of-life desires
- Dr. Brittany Lamb provides guidance regarding medical decision making with consultations for a fee on her website and free education via her Instagram account
- The National Institute on Aging provides information regarding financial and legal planning
Long Term Care
Learn about some options
- Coming soon
If you know of a resource that you feel should be included in this collection, please email us at asweetercourse@gmail.com