Early-onset Alzheimer's disease occurs in people age 30 to 60. It is rare, representing less than 5 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.

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 Disease 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
- Living with Early-Onset Alzheimer’s
- Legal and Financial Planning
- Caregiving
- Clinical Trials and Studies

General Resources

Alzheimer’s Disease Genetics Fact Sheet (2011, 8 p.)

This publication 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 Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/publication/alzheimers-disease-genetics-fact-sheet.

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 Health.com.

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: info@ alz.org.

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: info@ alz.org.

Tips and Strategies for People Living with Early-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: info@ alzheimer.ca.

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 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

About Alzheimer’s Disease: Legal and Financial Planning

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 Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/topics/legal-and-financial-planning.

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

Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging

Get Alzheimer’s care information and advice in this comprehensive guide from NIA. It discusses daily care, sundowning and other behaviors, and more.

Published by the NIA Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease/about-guide.

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).

Caregivers may also find helpful tips in these booklets about non-Alzheimer’s dementias:

Frontotemporal Disorders: Information for Patients, Families, and Caregivers

Get an overview of frontotemporal dementia, primary progressive aphasia, and related movement disorders in this NIH guide. Read advice for caregivers.

Published by the NIA Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/publication/frontotemporal-disorders/introduction.

Lewy Body Dementia: Information for Patients, Families, and Professionals

Learn about Lewy body dementia, including dementia with Lewy bodies and Parkinson’s disease dementia, which cause changes in thinking and movement.

Published by the NIA Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction

Clinical Studies and Trials

Participating in Alzheimer’s Research: For Yourself and Future Generations

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 Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@ nia.nih.gov. Free online access at www.nia.nih.gov/alzheimers/publication/participating-alzheimers-research/introduction.

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 www.nia.nih.gov/alzheimers/clinical-trials and www.clinicaltrials.gov.

~ Carolyn Van Dorn
3/10/2015