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)
Young-onset Alzheimer's: When symptoms begin before age 65 ⧉ (Mayo Clinic)
Books:
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
Caregiving: The Youngtimers Guide to Caregiving provides a curated selection of resources for those caring for someone with Early-Onset Alzheimer’s Diease.
Other helpful resources
Lorenzo’s House ⧉ supports young people in families facing younger-onset dementia
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.