Early-Onset Alzheimer’s Disease

What is early-onset Alzheimer’s disease?

Early-onset Alzheimer’s disease (EOAD) is a type of Alzheimer’s disease that affects people younger than 65. Healthcare providers sometimes call it young-onset or younger-onset Alzheimer’s disease. It happens when you develop Alzheimer’s symptoms before turning 65. Most people with EOAD first notice symptoms between ages 45 and 64.

Alzheimer’s disease (pronounced “alz-HAI-mers”) is a neurodegenerative disease. This means it damages and destroys cells in your brain over time. It’s the most common cause of dementia. EOAD is less than 1% of all cases of Alzheimer’s disease.

It might be hard for you to notice symptoms in yourself, especially at first. Your loved ones might point out subtle changes you can’t see. Visit a healthcare provider as soon as you notice any changes in your ability to remember, think or do daily activities.

What are early-onset Alzheimer’s symptoms?

Early-onset Alzheimer’s shares symptoms with typical Alzheimer’s disease. Usually, the only difference is when you first experience them. The condition causes a progressive cognitive decline. That means symptoms will become more severe over time as it damages your brain.

It might be hard for you to notice symptoms in yourself, especially at first. Your loved ones might point out subtle changes you can’t see. Talk to a healthcare provider if you or people you trust notice any dementia symptoms.

Early-onset Alzheimer’s causes a progressive cognitive decline. That means symptoms will become more severe over time as it damages your brain.

Everyone experiences EOAD differently. But in general, it affects your:

• Memory
• Language skills
• Reasoning ability
• Behavior and personality
• Spatial awareness

EOAD symptoms usually start mild and become more severe over time. At first, you might notice subtle changes, including:

• Changes in your behavior or personality (especially feeling more aggressive or impulsive)
• Having a hard time choosing the right word when you’re speaking or writing
• Memory loss (like not remembering people’s names, faces or events that just happened)
• Trouble solving problems that are usually easy for you
• Trouble concentrating or deciding what to do next, even if you have instructions (like following a recipe)
• Vision, balance or coordination issues (you might notice bumping into furniture or stumbling more often)

Later on, you might notice more severe symptoms, like:

• Forgetting where you are or how you got there
• More severe memory loss (including forgetting parts of your long-term memory)
• Not trusting loved ones, or feeling more suspicious (even of people you know)
• Losing some (or all) of your ability to speak and communicate

What causes early-onset Alzheimer’s disease?

An abnormal build-up of proteins in your brain causes early-onset Alzheimer’s. Specifically, two proteins called amyloid and tau.

Your brain has billions of nerve cells called neurons. Your neurons let you think, learn, remember and plan. Amyloid protein sticks together in your brain cells, forming clumps called plaques. Tau proteins twist together in fiber-like strands called tangles. The plaques and tangles prevent neurons from working as they should. They block neurons’ ability to send electrical and chemical signals back and forth.

When amyloid and tau proteins build up in your brain, they slowly kill neurons. This causes permanent damage that leads to Alzheimer’s symptoms. Nerve cell death starts in one area of your brain and then spreads to other areas. It’s most common for EOAD to begin in the area of your brain that controls memory — your hippocampus.

Experts are still learning more about what exactly causes these proteins to build up. Researchers think the protein build-up happens a long time before it causes issues. It might happen up to 10 years before you notice any symptoms.

Is early-onset Alzheimer’s genetic?

Yes, early-onset Alzheimer’s can be a genetic condition. Most cases of early-onset Alzheimer's disease appear linked with a genetic change on chromosomes 1, 14 or 21. Having the APOE ε4 gene also increases your risk. But not everyone who has the APOE ε4 gene will get Alzheimer’s. It’s just one factor that can increase your risk.

Alzheimer’s also runs in families.

Your risk of developing Alzheimer’s disease is higher if you have a biological parent or sibling with it. Your risk is even higher if two or more of your biological siblings or parents have it.

What are the risk factors?

Researchers are still studying what causes early-onset Alzheimer’s disease. Some risk factors may include:

• Having a family history of first-degree relatives with Alzheimer’s disease
• Environmental factors (something about where you live, work or spend a lot of time)
• Having a traumatic brain injury
• Smoking
• Your overall health

Some health conditions may increase your Alzheimer’s risk, including:

• Cardiovascular disease
• Diabetes
• Down syndrome caused by trisomy 21
• High blood pressure
• High cholesterol
• Obesity

What are early-onset Alzheimer’s complications?

The biggest complication of early-onset Alzheimer’s is the damage it does to your brain. That can cause permanent changes to your ability to think and use your body, and to your personality. As the condition progresses, you’ll probably experience complications, some of which can be fatal.

Complications can include:

• An overall decline in physical health
• Infections (like pneumonia or skin infections)
• Seizures
• Trouble breathing
• Trouble swallowing

Losing control of your body can increase your risk of:

• Bedsores
• Dehydration or malnutrition
• Falls, bone fractures and other traumatic injuries
• Losing control of your pee (urinary incontinence) and poop (bowel incontinence)
• Tooth decay, cavities and other dental issues

How do you diagnose early-onset Alzheimer’s?

Healthcare providers diagnose EOAD the same way they do typical Alzheimer’s disease. They’ll do a complete physical exam and neurological exam. Next, they’ll rule out other conditions that cause similar memory issues and other symptoms.

Your provider will ask you questions to understand your health and daily routine. They may also talk to a loved one to learn if they’ve noticed any changes you might not be able to see in yourself. Your provider may ask about your:

• Overall health
• Medical history
• Current medications or supplements you’re taking
• Changes in your mood, behavior and personality
• Ability to do your usual activities

Your provider will also use a few tests, including:

• Cognitive tests
• CT scan
• Brain MRI
• PET scan
• Blood tests
• Urine tests

There’s no single test that can confirm or diagnose early-onset Alzheimer’s. But together, these tests will help your provider rule out other conditions that cause similar symptoms.

What are early-onset Alzheimer’s disease treatments?

Your provider will suggest treatments to slow down how fast you develop dementia. There’s no cure for any type of Alzheimer’s disease. But treatments may manage symptoms as they happen and delay the condition’s progression.

Starting treatment as soon as possible is the best way to maintain your brain health throughout your life. But there’s currently no treatment available that stops or reverses the brain damage or cognitive decline.

Your provider will probably suggest typical Alzheimer’s treatments for EOAD. You may need medications, including:

• Cholinesterase inhibitors
• Donanemab
• Lecanemab
• NMDA antagonists

Aducanumab is a relatively new treatment for EOAD. Experts are still studying it. It reduces amyloid protein deposits in your brain.

Medications to manage specific symptoms

Your provider may suggest medications to manage specific symptoms as they develop. You may need:

• Antidepressants. These drugs can treat anxiety, restlessness, mood swings and depression.
• Antipsychotics (neuroleptics). These can treat paranoia, hallucinations and agitation.
• Antiseizure medications. These medications can also sometimes treat mood changes.

Clinical trials

Scientists are always researching EOAD and possible treatments. Ask your provider if there are any clinical trials that could help you. These are tests or research studies done using human volunteers who have early-onset Alzheimer’s disease. They might help you try new treatments that aren’t widely available yet.

What is the life expectancy for someone with early-onset Alzheimer’s disease?

Early-onset Alzheimer’s disease affects everyone differently. Some people live for decades. Others die within 10 years of diagnosis. How long you can expect to live depends on factors like:

• How quickly you experience cognitive decline
• Your age at diagnosis
• Your overall health and any other conditions you may have

Early-onset Alzheimer’s usually progresses faster than typical Alzheimer’s. This can mean you’ll develop more severe symptoms sooner than someone who was diagnosed after age 65. Talk to your provider about living with EOAD. They can help you set realistic goals and expectations.

How do I get used to living with early-onset Alzheimer’s?

It can be hard to adjust to living with early-onset Alzheimer’s. People young enough to have EOAD are usually still working and might have young families. This can create challenges that people who develop typical Alzheimer’s may not have.

In the U.S., the Americans with Disabilities Act covers your right to accommodations at work. Your healthcare provider can suggest other resources, too. You can start planning for the future before you experience more severe symptoms. You might want to think about things like advanced directives and legal and financial plans.

Talk to a mental health professional if you need support. It’s extremely common for people with early-onset Alzheimer’s and their loved ones to feel extra stress, anxiety and grief, especially right after diagnosis. Those feelings are real and valid, but they don’t have to control your life. A mental healthcare provider can help you process your thoughts and emotions.

When should I see my healthcare provider?

See a healthcare provider right away if you’re experiencing issues with memory or thinking.

You’ll need regular check-ups with your provider. They’ll monitor the condition’s progression and adjust your treatments as needed.

You might want to ask your provider questions like:

• What symptoms or changes should I and my loved ones watch out for?
• Is there any way to estimate how quickly the condition will progress?
• Which treatments are best for me?
• Can you suggest any community resources to help my family adjust?