What Is Early-Onset Alzheimer’s?

What Is Early-Onset Alzheimer’s?

What Is Early-Onset Alzheimer’s?
Jacob Wackerhausen/iStock

Alzheimer’s disease develops when neurons (nerve cells) in the brain stop functioning, lose connections with other neurons, and eventually die.

Although Alzheimer’s dementia typically affects people who are 65 and older, it can also appear in people who are much younger. They may be in their fifties, forties, or even their thirties.

Early-onset (also called younger-onset) Alzheimer’s and late-onset Alzheimer’s disease usually affect the brain in similar ways, but the issues each raises for the person who has it — from getting an accurate diagnosis to planning for the future — can be very different.

There is no cure for early-onset Alzheimer’s, but certain treatments may help maintain cognitive function and slow the progression of the disease.

Signs and Symptoms of Early-Onset Alzheimer’s Disease

For most people, the symptoms of early-onset Alzheimer’s mirror those of the late-onset kind, with memory loss usually the first sign of a problem.

But when younger people develop Alzheimer’s dementia, they are more likely than older people to develop what’s called an atypical version. Rather than memory loss, initial symptoms of atypical Alzheimer’s dementia may include difficulties with vision, language, planning, or behavior.

Initial symptoms of early-onset Alzheimer’s may include:

  • Forgetting important information
  • Asking repeatedly for the same information
  • Trouble following basic instructions or tasks
  • Forgetting the date or season
  • Forgetting where you are, or how you got there
  • Vision problems, such as depth perception
  • Difficulty following conversations or finding words
  • Withdrawing at work or in social situations
  • Changes in mood or personality
  • Poor judgment or uninhibited behavior
Later symptoms of early-onset Alzheimer’s may include:

  • Severe memory loss
  • Deep confusion about where you are or life events
  • Difficulty with talking, walking, or swallowing
  • Having suspicions about family, friends, or caregivers
  • Severe mood swings or changes in behavior

Causes and Risk Factors of Early-Onset Alzheimer’s Disease

For most people with early-onset or late-onset Alzheimer’s, the disease appears to be caused by a combination of genetics, lifestyle, and environmental influences interacting in ways that are still not clearly understood.

The only known risk factor for early-onset Alzheimer’s, specifically, is a family history of the disease.

Researchers have made progress in identifying genes, passed on in families, that raise the risk of both early-onset and late-onset Alzheimer’s.

A variant of a gene called apolipoprotein E (APOE) increases the odds of developing Alzheimer’s in people of all ages, though it does not mean someone will definitely get the disease. People with two copies of this variant, APOE e4, are even more likely to develop Alzheimer’s (one copy is inherited from each parent).

In about 10 to 15 percent of cases, early-onset Alzheimer’s is directly caused by a mutation or variant in one of three specific genes. Anyone who inherits one of these single-gene variants — known as APP, PSEN1, and PSEN2 — has a strong likelihood of developing Alzheimer’s at a younger age.

Studies show that the brains of people with Alzheimer’s — including early-onset Alzheimer’s — contain a large amount of specific proteins in what are known as plaques and tangles.

Plaques form when pieces of a protein called beta-amyloid clump together. Tangles consist of twisted fibers of another protein, called tau. These plaques and tangles are believed to cause damage first in areas of the brain that affect memory, then in other areas of the brain. But how and why this occurs isn’t fully understood.

How Is Early-Onset Alzheimer’s Disease Diagnosed?

An early-onset Alzheimer’s diagnosis can be difficult because doctors don’t typically look for the disease in younger people.

Instead, healthcare professionals may blame symptoms on stress, menopause, depression, or other conditions. As a result, you may not get the treatment you need for too long.

To understand what’s causing your symptoms, a doctor should conduct a thorough investigation that includes a detailed family and personal health history, physical and neurological tests, a cognitive assessment, and possibly a brain-imaging scan.

Depending on the results of your initial cognitive testing, your doctor may refer you to a neuropsychologist for more in-depth cognitive tests.

In most cases, genetic tests are not used to diagnose early-onset Alzheimer’s disease. But if you have a clear family history of Alzheimer's, your doctor may order a test for one of the three known single-gene variants that causes the disease.

Treatment and Medication Options for Early-Onset Alzheimer’s Disease

There are a few drugs that may help anyone with Alzheimer’s disease maintain cognitive function for a limited period of time. These include:

  • donepezil (Aricept)
  • rivastigmine (Exelon)
  • galantamine (Razadyne)
  • memantine (Namenda)
  • donepezil and memantine (Namzaric)
  • lecanemab (Leqembi)
  • donanemab (Kisunla)
Other therapies, including other medications, may also help treat common behavioral and psychiatric problems associated with Alzheimer’s. These can include depression, anxiety, sleeplessness, wandering, or agitation.

Treating any cardiovascular problems or diabetes may also help control early-onset dementia. Beyond medical treatments, lifestyle factors like physical activity, getting enough antioxidants in your diet, and cognitive training may help limit your symptoms, although research in these areas is ongoing.

Early-Onset Alzheimer’s Disease Prognosis

There’s no cure for Alzheimer’s disease, at any age. But getting a diagnosis as soon as possible may lead to more effective treatment, helping you treat your cognitive symptoms and possibly delaying progression of the disease.

Coping with a diagnosis of early-onset Alzheimer’s can be difficult. You may benefit from joining a support group, and by trying to lead as active and mentally engaging a life as possible. Other potentially beneficial steps include exercising regularly, following a healthy diet, limiting your alcohol intake, and reducing stress through relaxation techniques.

Research and Statistics: How Many People Have Early-Onset Alzheimer’s Disease?

While an estimated 6.9 million Americans ages 65 and older are living with Alzheimer’s, around 200,000 people under age 65 are believed to have the disease.

Ongoing research on genetic factors in early-onset Alzheimer’s may help explain why the disease involves a wider variety of symptoms and disease patterns in younger adults. Research may also lead to more accurate diagnostic tests for early-onset Alzheimer’s, as well as tests that can identify biological changes linked to the disease early on before any symptoms occur.

The Impact of Early-Onset Alzheimer’s Disease on Your Family

People who develop Alzheimer’s disease in their thirties, forties, or fifties face unique social, emotional, and financial challenges.

Many people with this diagnosis may still be raising children. Contemplating the impact of the disease on family life can cause grief and anxiety, but it’s important that kids know what’s happening once they’re old enough to understand.

Here are a few pieces of advice from the Alzheimer’s Association.

  • Be open about the changes in your health and life.
  • Take steps to address your child’s emotional needs, such as meeting with a counselor who focuses on helping families cope with chronic illness.
  • Make sure your child’s teachers and school social workers are aware of what’s happening.
  • Stay involved in your child’s life and plan activities you can still do together. If driving is no longer possible for you, explore other ways to get around.
  • Humor helps. Find things you can laugh about together.
  • Record your thoughts and feelings in a journal or on video or audio for your child to have later in life.

The Financial Implications of Early-Onset Alzheimer’s

People with early-onset Alzheimer’s disease may face a daunting financial future, particularly if their job is their main source of income.

Those who are still working may be eligible for disability benefits or may be able to use benefits offered under the federal Family and Medical Leave Act, which allows up to 12 weeks of unpaid, job-protected leave each year for family and medical reasons with continuation of group health insurance coverage.

People who need to leave their job may be able to retain employer-sponsored healthcare coverage for as long as 36 months (depending on the circumstances) under the federal law COBRA.

The Health Insurance Marketplace in each state, created by the Affordable Care Act (ACA), is another option for healthcare coverage. ACA health plans cannot refuse coverage to people with preexisting conditions, meaning no one can be denied insurance because of an Alzheimer’s diagnosis.

The Social Security Administration has added early-onset Alzheimer’s disease to its list of conditions under the Compassionate Allowances initiative. This means people younger than 65 who qualify have expedited access to Social Security Disability Insurance and Supplemental Security Income.

Pension plans and retirement accounts can typically be drawn from before retirement age if you have a disability as defined under the plan or account’s guidelines.

A financial planner who is familiar with elder care or long-term care planning can help you understand your choices and take a proactive approach to your finances.

The Takeaway

  • Early-onset Alzheimer’s is a rare form of the disease that causes loss of cognitive function beginning in a person’s fifties, forties, or even thirties.
  • In most cases, there is no clear cause of early-onset Alzheimer’s. But sometimes a single inherited genetic variant causes the condition, which may be the case if you have a strong family history of Alzheimer’s.
  • There’s no cure for early-onset Alzheimer’s, but medical treatments and lifestyle measures can help you preserve cognitive function and quality of life for as long as possible.

Common Questions & Answers

What causes early-onset Alzheimer’s disease?
In most cases, there is no clear cause of early-onset Alzheimer’s disease. As with later-onset Alzheimer's, it’s believed to be caused by a combination of genetic, lifestyle, and environmental factors. Rarely, a single genetic variant causes the disease.
It’s unclear what steps, if any, can be taken to prevent Alzheimer’s disease at any age. General healthy lifestyle measures like physical activity, a healthy diet, and abstention from alcohol and other drugs may be beneficial.
Drug treatments for Alzheimer’s disease, at any age, may help with cognitive symptoms for months to years. You may also be prescribed medications for noncognitive symptoms like behavioral changes, sleep difficulties, or anxiety.
It’s important to start treatment as soon as possible after your diagnosis. Other important steps may include exploring disability benefits and financial planning, as well as deciding how to make the most of your time with loved ones.

Additional reporting by Quinn Phillips.

EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
  1. Alzheimer’s Disease Facts and Figures. Alzheimer’s Association.
  2. Early-Onset Alzheimer's Disease. Johns Hopkins Medicine.
  3. What Causes Young-Onset Dementia? Alzheimer’s Society.
  4. Alzheimer's Disease Genetics Fact Sheet. National Institute on Aging. March 1, 2023.
  5. If You Have Younger-Onset Alzheimer's Disease. Alzheimer’s Association.
  6. How Is Alzheimer's Disease Treated? National Institute on Aging. Septemebr 12, 2023.
  7. Alzheimer's Disease Facts and Figures. Alzheimer’s Association.
  8. Sirkis DW et al. Dissecting the Clinical Heterogeneity of Early-Onset Alzheimer’s Disease. Nature Portfolio. April 7, 2022.
  9. Helping Family and Friends. Alzheimer’s Association.
  10. Compassionate Allowances. Social Security.
David-Weisman-bio

David Weisman, MD

Medical Reviewer

David Weisman, MD, is the director of the Clinical Trial Center at Abington Neurological Associates in Pennsylvania, where he has conducted numerous clinical trials into mild cognitive impairment and Alzheimer’s disease to develop disease-modifying drugs.

Dr. Weisman has dedicated his research career toward advancing new therapies for Alzheimer’s disease, focusing on clinical trials for the prevention and treatment of Alzheimer’s disease, mild cognitive impairment, and other dementias, and he devotes his clinical practice to memory and cognitive problems.

He received a bachelor's degree in philosophy from Franklin and Marshall College, then an MD from Penn State College of Medicine. After an internship at St. Mary’s Hospital in San Francisco, he completed his neurology residency at Yale, where he served as chief resident. He then went to the University California in San Diego for fellowship training in Alzheimer’s disease and other dementias.

Weisman has published papers and studies in journals such as Neurology, JAMA NeurologyStroke, and The New England Journal of Medicine, among others.

Pam-Kaufman-article

Pamela Kaufman

Author

Pamela Kaufman assigns and edits stories about infectious diseases and general health topics and strategizes on news coverage. She began her journalism career as a junior editor on the health and fitness beat at Vogue, followed by a long stint at Food & Wine, where she rose through the ranks to become executive editor. Kaufman has written for Rutgers University and Fordham Law School and was selected for a 2022 Health Journalism Fellowship from the Association of Health Care Journalists and the Centers for Disease Control and Prevention (CDC).

Kaufman enjoys going on restaurant adventures, reading novels, making soup in her slow cooker, and hanging out with her dog. She lives in New York City with her husband and two kids.