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What Is Early Onset Alzheimer’s? A Guide for Families and Caregivers

When you think of Alzheimer’s disease, you probably picture an older adult in their 70s or 80s. But what if the signs show up much earlier — before age 65? 

Early-onset (or younger-onset) Alzheimer’s disease is a type of dementia that can begin as early as your 40s and 50s. It is less common and often misunderstood. 

“Many people don’t realize that Alzheimer’s can begin in middle age,” said Parichita Choudhury, MD, a cognitive neurologist with Banner Sun Health Research Institute. “Because this form of dementia doesn’t always start with memory problems, it can go unnoticed for years.”

Health care providers don’t always check for Alzheimer’s disease in younger people, so getting an accurate diagnosis can take time and feel frustrating. 

Could you or a loved one be at risk? Here’s what you need to know about spotting the signs, getting diagnosed and finding support.

What are the signs of early-onset Alzheimer’s disease?

Many of the early symptoms of younger-onset Alzheimer’s disease are often mistaken for stress, aging or other health problems. For many people, memory loss is not the first symptom. Instead, they may have:

Language difficulties

Trouble finding words, reading or following conversations and instructions. These problems affect the left side of the brain, which helps us understand and use language.

Dr. Choudhury explains that this can make it hard to keep up at work. “They’ll tell me, ‘I’m not doing well at work,’” she said. “They can’t keep track of emails or verbal instructions. They start forgetting words and struggle to remember what they’ve read.”

Vision problems

Difficulty reading, judging distance while driving or recognizing faces.

“This is a form of visual variant Alzheimer’s, where the brain fails to interpret visual data properly,” Dr. Choudhury said. “You see the trees but not the forest.”  

You might miss road signs, fail to recognize familiar faces or have trouble with depth perception while driving. You could go to the eye doctor thinking something is wrong with your vision, but the problem is actually in your brain, not your eyes.

Executive function challenges 

Trouble with multitasking, planning or staying organized. This can make everyday tasks like budgeting, meal planning or scheduling appointments feel overwhelming. As the brain’s ability to plan and make decisions worsens, these everyday tasks become more challenging.

Behavioral changes

Mood swings, changes in personality or actions that seem out of character.

“These behavioral shifts often lead to misunderstandings and confusion for both the person with Alzheimer’s and their loved ones,” Dr. Choudhury said. “People may become withdrawn, irritable or anxious without a clear reason. That can be very upsetting for family members and caregivers.”

What causes early-onset Alzheimer’s?

Scientists aren’t sure why some people get Alzheimer’s at a younger age, but genes may play a role. 

“One key risk factor is the APOE4 gene (apolipoprotein 4),” Dr. Choudhury said. “People with two copies of this gene may be up to 20 times more likely to develop Alzheimer’s 10 to 20 years earlier than others.”

In some families, early-onset Alzheimer’s is caused by rare genetic mutations (changes). If you inherit one of these mutations – APP, PSEN1 or PSEN2 genes – you may develop the disease earlier in life. 

[Learn more about how your genes can affect your brain health.]

Other risk factors may also increase your risk:

  • Lower education levels: Less schooling has been linked to a higher risk of Alzheimer’s.
  • Smoking and heavy drinking: Both can hurt brain function.
  • Lack of exercise: Staying active protects brain health.
  • Untreated depression: Mental health plays a big role in how the brain works.

How is early-onset Alzheimer’s diagnosed?

One of the hardest things about this type of dementia is that many health care providers don’t expect to see it in younger people.

“You have to have a high level of suspicion,” Dr. Choudhury said. “It won’t always show up as memory loss, so you need to ask the right questions.”

People may do well on memory tests, which can lead to a wrong diagnosis or delays in care.

To diagnose it, providers may use:

  • Medical history and cognitive tests to check problem-solving, speech and memory
  • Brain imaging (MRI) to look for shrinkage of the brain
  • PET or glucose scans to spot unusual brain activity
  • Spinal fluid or blood tests to check for Alzheimer’s proteins

If you’re worried about symptoms, talk to your health care provider or reach out to a Banner Health specialist

Treatment and daily support

There’s no cure for Alzheimer’s — yet. But getting diagnosed early can help you get the right care and improve your quality of life.

“Early diagnosis is so important because patients can benefit even more from treatment,” Dr. Choudhury said. “Their brains are younger and more resilient, so they can get the most out of medications and therapies.”

Medications

Drugs like donepezil, rivastigmine, galantamine, and memantine can help manage symptoms. A newer drug, lecanemab (Leqembi), may also slow the disease’s progression.

Therapy and lifestyle support

  • Speech therapy: Helps with talking and word-finding
  • Vision therapy: Useful for those with visual issues
  • Home changes: High-contrast colors, bright lighting and removing trip hazards can make life safer
  • Cognitive therapy: Exercises to boost thinking and planning skills
  • Physical activity: Regular movement helps the brain stay sharp

“For those experiencing vision problems, simple adjustments like using magnifiers for reading or increasing contrast in the home can make daily life much easier,” Dr. Choudhury said.

Living with early-onset Alzheimer’s 

Getting diagnosed in your 40s or 50s can turn your world upside down. You may still be working, raising kids or taking care of parents.

As the disease progresses, you may need to stop working or apply for disability, which can be tough.

“There’s a pervasive idea in society that Alzheimer’s doesn’t affect younger people and that makes it a battle to get disability for early-onset Alzheimer’s,” Dr. Choudhury said. “We need more awareness and advocacy for these patients.”

Many people also feel depressed or anxious. That’s why support is so important. Connecting with support groups, legal resources and financial planners can make it easier to plan ahead and feel more in control. While these conversations can be difficult, making plans now can ease stress in the future.

[Also read “Tips for Planning Ahead to Care for a Loved One with Dementia.”]

When to seek help

If you or a loved one is having changes in speech, vision or thinking, don’t ignore it. Early-onset Alzheimer’s disease is rare but real. An early diagnosis can help you take steps to slow the disease and stay independent longer.

"If something feels off, trust your instincts," Dr. Choudhury said. "Seek help, push for answers and don’t let your concerns be dismissed just because you’re under 65."

You may also qualify for a national study on early-onset Alzheimer’s called the Longitudinal Early-Onset Alzheimer’s Disease Study (LEADS). This national research study is enrolling participants at sites across the country, including Banner Alzheimer’s Institute. Learn more about LEADS and see if you qualify.

If you need help, contact a neurology specialist at Banner Alzheimer's Institute or Banner Sun Health Research Institute. You’re not alone and help is here.

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