Resources for non-familial early-onset Alzheimer's disease

It is estimated that only 11% of early-onset Alzheimer's disease (also called young- or younger-onset Alzheimer’s disease) is associated with a genetic mutation on one of the three genes known to cause familial Alzheimer’s disease (FAD). That means that 89% of early-onset Alzheimer's cases are not familial.

Although non-familial Alzheimer’s is not our primary focus at Youngtimers, we often hear from people who are facing an early-onset Alzheimer's disease diagnosis of either themselves or a family member.

We’ve compiled these resources to help people in that situation.

• Learn about early-onset Alzheimer’s disease

  • Younger/Early-Onset Alzheimer's  (Alzheimer’s Association)

  • If You Have Younger-Onset Alzheimer's Disease (Alzheimer’s Association)

  • Video: Living with Younger-Onset Alzheimer's (Alzheimer’s Association)

  • Documentary: Toosoontoforget.net

  • Young-onset Alzheimer's: When symptoms begin before age 65 (Mayo Clinic)

  • Books:

    • Books about Early Onset Alzheimer’s

    • More books about Early Onset Alzheimer’s
      

• About APOE ε4: Aside from FAD mutations, researchers have found genetic variants that change a person’s likelihood of developing late-onset Alzheimer’s disease (LOAD). These variants are sometimes called “Alzheimer’s risk genes.” The most well-known “risk gene” is apolipoprotein E (APOE).
  
  The APOE ε4 variant increases a person’s risk of Alzheimer’s disease and is also associated with an earlier age of onset. Some people inherit 2 copies of APOE ε4, which causes a unique genetic form of Alzheimer’s disease. APOE ε4 does not cause Alzheimer’s for every person who carries it.
  
  Learn more at ApoE4.Info
  

• Clinical trials: Help scientists learn more about early onset Alzheimer’s disease by joining a clinical trial. The LEADS (Longitudinal Early-Onset Alzheimer’s Disease) Study seeks to explore how early-onset Alzheimer’s disease develops, and how it compares to the more common late-onset Alzheimer’s variant.
  
  Learn more about the LEADS Study
  

• Local resources

• The Alzheimer’s Association may offer support groups in your area. To find meetings closest to you, enter your zip code and pick a radius from the list. Find a Support Group

• Contact a local Alzheimer’s disease research center (ADRC) to learn about trials and resources are available to you. Find an ADRC.
  

• Virtual support groups

• The “Without Warning” program from Rush University offers: 

• A weekly group for caregivers

• A bi-monthly group for children

• Three monthly groups for people with dementia (2 facilitated by a board certified music therapist and one which is more verbal based)

• Virtual caregiver support groups from Hilarity for Charity
  

• Caregivers resources from Hilarity for Charity

• Caregiver respite program

• Caregiver roadmap
  

• Other helpful resources

  • Lorenzo’s House supports young people in families facing younger-onset dementia

  • Brain Health Habits

  • TimeSlips: An evidence-based method that invites people into meaningful engagement, designed especially for people with dementia who are unable to discuss the past reliably.

  • 24/7 Helpline - The Alzheimer’s Association runs a free helpline at 800.272.3900. Get confidential emotional support, crisis assistance, local resources and information in over 200 languages.