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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 (2019)

This fact sheet explains basic genetics and the genetic mutations and risk factors involved in early- and late-onset Alzheimer’s disease. It also describes genetic testing, with links for more information.

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

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 Disease (2019)

This article describes the key differences between the early- and late-onset forms of Alzheimer’s disease, including initial signs and symptoms, as well as treatment options. Links to other resources from the BrightFocus Foundation are provided.

Published by the BrightFocus Foundation.

Early-Onset Alzheimer's: When Symptoms Begin Before Age 65 (2019)

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 three 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, life issues related to the disorder, and research. A database of clinics with expertise in early-onset dementia is provided.

Published by Alzforum.

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 Health.com.

Younger/Early Onset Alzheimer's

This web page explains the disorder, providing information about diagnosis, causes, family impact, and sources of help. The information is also provided in Spanish.

Published by the Alzheimer’s Association.

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.

Young Onset Dementia (2019)

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 the Alzheimer Society of Canada.

HealthCare.gov

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 allows consumers to shop for and compare health insurance plans. All plans included in this government database must cover treatment for pre-existing medical conditions.

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 (2017)

Advance planning ideally takes place soon after a diagnosis of early-stage Alzheimer’s disease, while the person can still think clearly and make decisions. This web page explains the basics of legal and financial planning and links to helpful NIA publications. A Spanish-language version is provided.

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

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: compassionate.allowances@ssa.gov.

Caregiving

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: adear@nia.nih.gov.

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 (2017)

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: adear@nia.nih.gov.

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.