AFTD's Persons with FTD Advisory Council's

FTD Toolbox

The information and resources listed below were selected by AFTD’s Persons with FTD Advisory Council based on their personal experience and what they have found helpful.

Transportation (local):

  • GoGoGrandparent
  • SilverRide
    • Phone: (800) 618-1246
    • This transportation service is for people 65 years of age and over.
  • Care.com (transportation and in-home care)
    • There is no telephone number.
    • You must first open an account.
  • Check your Area Agency on Aging for services in your area.

Travel Assistance:

  • Air Travel
    • TSA Pre-check
      • Expedites security checkpoint. Must be completed before traveling 
      • 855-787-2227 
    • TSA Cares
      • Will meet you at airport and escorts you to security and provides assistance before and during the screening process
    • Hidden Disabilities Sunflower Program
      • A simple tool to share that you have a condition that may not be immediately apparent and that you may need a helping hand, understanding, or more time in shops, on transport, or in public spaces.     
    • Information on air travel with dementia.

Medication: Information to share with your physician.

Information on the use of Alzheimer’s medications for dementia and FTD can be found at the University of CA Memory and Aging Center: Medications and Dementia  

  • Medications to treat the following symptoms:
    • Anxiety
    • Incontinence
    • Insomnia
    • Depression
    • Pain
    • Hallucinations/delusions/severe agitation/aggression
  • Provides specific details for each symptom including:
    • Drugs to avoid with FTD and why
    • Nondrug strategies, such as pressure and weights to reduce anxiety
    • Safer medications to consider
    • Anesthesia  
  • Information for healthcare professionals on medications to treat symptoms of FTD

Dementia Apps - Free apps available on the Apple App Store or Google Play:

Social media and online support groups:

Books and Articles:

Research information and opportunities:

Financial Considerations and Assistance:

  • AFTD Comstock Quality of Life Grant
    • Apply anytime
    • New grants are available starting in July
  • Social Security Disability Insurance (SSDI), Compassionate Allowances Program
  • You may also qualify for Supplemental Security Income(SSI).
  • Ask about short-term disability through your last employer or your state while waiting for SSDI to start.
    • Not every employer/state participates in short-term disability.
  • People less than 65 years old, or under the age of retirement, who qualify for Social Security Disability, will have to wait for 2 years before they are eligible for Medicare 
    • COBRA maybe available from your employer but can be expensive
  • It is difficult to obtain affordable long-term insurance after genetic testing
  • You may qualify for a Medicaid program including Home and Community-Based Services (HCBS) 
    • Check your state or county for services
  • You may also qualify for In Home Support Services (IHSS) 
    • Check your state or county for services
  • There are attorneys who can help with Social Security and Disability (including people who are disabled and under age 65). To find an attorney in your state go to https://www.naela.org/FindALawyer or https://nosscr.org/