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Living with Dementia

Early-Onset Alzheimer's Disease: A Resource List

Early-onset Alzheimer's disease occurs between a person's 30s to mid-60s. It is rare, representing less than 10 percent of all people who have Alzheimer's. People with this disorder are younger than those with late-onset Alzheimer’s and face different issues, such as dealing with disability at work, raising children, and finding the right support groups.Older mon looking sad

This resource list offers a selection of materials that may help people with early-onset Alzheimer’s disease, their families, and caregivers. All of the resources on this list are free and accessible online.

Visit the National Institute on Aging’s (NIA’s) Alzheimer’s and related Dementias Education and Referral Center for free publications, caregiving resources, and more information about Alzheimer’s.

The items on this list are organized by these categories:

General Resources

Alzheimer’s Disease Genetics Fact Sheet (2011)

This fact sheet explains basic genetics and the genetic mutations and risk factors involved in early- and late-onset Alzheimer’s disease. It describes NIA-supported genetics research and includes a glossary and list of resources.

Published by the NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email:

Early-Onset Alzheimer’s Disease

This short overview explains the differences between early- and late-onset Alzheimer’s, common symptoms, and how the disease is diagnosed. It provides tips for managing early-onset Alzheimer’s through drug and nondrug approaches.

Published by Johns Hopkins Medicine.

Early-Onset Alzheimer's: When Symptoms Begin Before Age 65 (2014)

In this online fact sheet, a neuropsychologist answers questions about early-onset Alzheimer’s disease. Topics covered include how and why the disease often runs in families, the advisability of genetic testing, coping at work, and changes in family relationships.

Published by the Mayo Foundation for Medical Education and Research.

Early Onset Familial AD

This special section of the science website Alzforum features several articles about familial Alzheimer’s disease, an inherited form of early-onset Alzheimer’s. Written for affected individuals, family members, doctors, and care providers, the articles offer reliable, up-to-date information about diagnosis, treatment, genetic counseling and testing, and life issues related to the disorder.

Published by Alzforum.

Early-Onset Familial Alzheimer Disease (2012)

A comprehensive article summarizes the genetics of early-onset familial Alzheimer’s disease, with details about the PSEN1, APP, and PSEN2 genetic mutations. Age of onset for each mutation, prevalence, disease management, and genetic testing issues are discussed.

Available from the National Center for Biotechnology Information, National Library of Medicine.

What You Should Know About Early-Onset Alzheimer’s (2015)

Although early-onset Alzheimer’s has a different age of onset and genetic profile than the late-onset form of the disease, the symptoms and treatment are much the same, this article explains. Dr. Mary Sano, director of Alzheimer’s disease research at Mount Sinai School of Medicine, New York, discusses the difference between normal middle-aged forgetfulness and a serious memory problem.

Published by

Younger/Early Onset Alzheimer's & Dementia

This web page briefly explains the disorder, providing information about diagnosis, causes, and sources of help.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email:

Younger-Onset Dementia: An Overview (2013, 2 p.)

Different types of dementia can affect people under age 65, so it’s important to get a careful diagnostic evaluation, states this online fact sheet. Challenging personal issues, such as loss of income and changes in family relationships, can be expected.

Published by Alzheimer’s Australia.

Living with Early-Onset Alzheimer’s

If You Have Younger-Onset Alzheimer’s Disease

This online article offers advice about living with early-onset Alzheimer’s. It discusses how the disease may impact families and employment, the need to plan ahead, and different types of insurance and benefits that can help people with the disease.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email:

Young Onset Dementia

This online tip sheet suggests ways to live well with early-onset Alzheimer’s. Accepting the disease and making changes at home and at work are key. Tips are given for financial planning, health and safety, and relationships.

Published by Alzheimer’s Society Canada. Phone: 1-800-616-8816. Email:

People with early-onset Alzheimer’s who don’t have access to employer-sponsored health insurance may be able to buy insurance through a federal or state exchange. This federal government website explains the Affordable Care Act, including provisions on pre-existing conditions, and allows consumers to shop for and compare health insurance plans.

Available from the U.S. Department of Health and Human Services. Phone: 1-800-318-2596.

Legal and Financial Planning for People with Alzheimer's 

Ideally, advance planning should take place soon after a diagnosis of early-stage Alzheimer’s disease, while the person can think clearly and make decisions. This web page explains the basics of legal and financial planning and links to helpful NIA publications.

Published by the NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email:

Social Security Compassionate Allowances Program

This program allows people with designated serious diseases and disorders, including early-onset Alzheimer’s, to have their applications for Social Security disability benefits reviewed quickly. See the Compassionate Allowances information on early-onset Alzheimer’s disease.

Published by the Social Security Administration. Phone: 1-800-772-1213. Email:


Alzheimer's Caregiving Information from the National Institute on Aging

Get Alzheimer’s care information and advice from NIA, including information on daily care, sundowning and other behaviors, and more.

Published by the NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email:

Early Onset Dementia: Advice for Caregivers

Partners of people with early-onset dementia must often take on added responsibilities in addition to caring for the person with dementia. This fact sheet offers advice on changes to expect and ways to reduce stress.

Published by the National Initiative for the Care of the Elderly (Canada).

Clinical Studies and Trials

Participating in Alzheimer’s Disease Research

Learn what’s involved in volunteering for Alzheimer’s research. Read about benefits and risks, questions to ask, participant safety, and placebos.

Published by the NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email:

Dominantly Inherited Alzheimer Network (DIAN)

Adult children with a biological parent who has a known genetic mutation for Alzheimer’s are invited to sign up for the DIAN registry. The purpose of this study is to identify potential biomarkers that may predict the development of Alzheimer's in people who carry an Alzheimer's mutation.

To search for more clinical studies and trials, visit NIA's clinical trials finder.

This content is provided by the National Institute on Aging (NIA), part of the National Institutes of Health. NIA scientists and other experts review this content to ensure that it is accurate, authoritative, and up to date.