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
Mesulam Center Early-Onset Family Support Group ⧉ - Hosted by the The Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University Feinberg School of Medicine, this monthly support group is for family members and care partners of people living with early-onset dementia. It takes place on the second Monday of each month from 4:30 to 6 p.m. CT.
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 disease.
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.