Young-onset Alzheimer's: When symptoms begin before age 65

When Alzheimer's begins in middle age, misdiagnosis may be more likely. This rare form of Alzheimer's affects work, finances and family.

By Mayo Clinic Staff

What is young-onset Alzheimer's?

Young-onset (also called early-onset) Alzheimer's is an uncommon form of dementia that affects people younger than age 65. About 5% to 6% of people with Alzheimer's disease develop symptoms before age 65. So if 6 million Americans have Alzheimer's, around 300,000 to 360,000 people have the young-onset form of the disease.

Most people with young-onset Alzheimer's develop symptoms of the disease when they are between 30 and 60 years old.

Causes

For most people with young-onset Alzheimer's, the cause is not related to any single genetic mutation. Experts don't fully know why some people get the disease at a younger age than others do.

Less commonly, young-onset Alzheimer's can result from mutations in one of three genes (APP, PSEN1 or PSEN2), which can potentially be passed on to other family members. Having a parent or grandparent who also developed young-onset Alzheimer's can be a clue suggesting one of these gene changes.

Together, these three genes are present in less than 1% of all people with Alzheimer's but in about 11% of people with young-onset Alzheimer's. If you have a genetic mutation in one of those three genes, you may develop Alzheimer's before age 65.

It's important to understand that a family history of Alzheimer's disease does not necessarily mean that there is a gene mutation present in an individual or family. A lack of family history also doesn't mean that someone won't develop young-onset Alzheimer's disease. It is possible to develop young-onset Alzheimer's disease from causes other than changes in these three genes.

Genetic testing for these mutations is available, but anyone who's considering it should pursue genetic counseling — to examine the pros and cons before getting tested.

For example, it may be helpful to consider how a positive test may affect your eligibility for long-term care, disability and life insurance.

And if you know that you carry a form of the young-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.

If you have young-onset Alzheimer's linked to one of the three genes or carry a form of these genes without symptoms, talk to your doctor about participating in a research study. By studying the young-onset form of Alzheimer's, researchers hope to learn more about the causes and progression of the disease and develop new treatments.

Accurate diagnosis is critical

An accurate diagnosis of young-onset Alzheimer's is crucial. It's important to rule out other potential — possibly treatable — causes of your symptoms and start appropriate treatment. Alzheimer's disease can also have slightly different features in younger individuals, which can lead to misdiagnosis and delaying of appropriate treatment, resulting in negative effects on quality of life.

It's also important for personal and professional reasons. For you and your family, the diagnosis is fundamental in helping your family respond with appropriate understanding and compassion. It can also give you and your family more time to make important decisions about financial and legal issues.

At work, it can allow you to explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule.

How to cope with young-onset Alzheimer's

Alzheimer's disease has a tremendous impact at any age. But people with young-onset Alzheimer's disease may face some unique challenges.

They may face stigmas and stereotypes about the disease. Due to their young age, people with young-onset Alzheimer's may find that others do not believe they have the disease or question the diagnosis.

People with young-onset Alzheimer's may lose relationships or jobs because they haven't been diagnosed with a neurologic illness that affects their functioning. They may also face a loss of income from being diagnosed while still working.

What to do at work

Before your condition significantly affects your ability to do your job, talk to your employer. What you can do:

  • Find out if you can switch to a position that better suits your emerging limitations.
  • Familiarize yourself and your spouse, partner or caregiver with your benefits, and find out whether an employee assistance program is available.
  • Explore what benefits may be offered to you under the Americans with Disabilities Act, Family and Medical Leave Act and COBRA.
  • If you feel overwhelmed, consider reducing your hours or taking time off.

Coping tips for couples

After a diagnosis of young-onset Alzheimer's, spouses or partners often feel a sense of loneliness or loss as they face the possibility of spending many years without an active partner.

Losing the romantic component and changing to a caregiver status also complicates the relationship. Try to:

  • Talk about what kind of help you need from each other. Communicate about changes you're experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
  • Continue participating in as many as possible of the activities that you currently enjoy with your partner and adapt as necessary. Or find new activities that you can enjoy together.
  • Keep a folder of resources you may need as the disease progresses.
  • Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.

How to involve kids

A diagnosis of young-onset Alzheimer's can also be difficult for children, who may not understand. Children may blame themselves, become angry or react in any number of ways. Try to:

  • Find activities you can enjoy together.
  • Stay engaged and talk with your children honestly about what you're experiencing.
  • Find a support group for children, and invite your kids to some of your counseling sessions. Make your child's school counselor and social worker aware of your condition.
  • Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They'll appreciate you sharing your wisdom and memories.

Financial issues

People with young-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.

Some medical benefits plans and many social-support programs won't provide assistance unless the person with Alzheimer's is older than age 65. Younger people may need special waivers to get into such programs. What you can do:

  • Talk with a financial planner and an attorney to help you plan for your future financial needs and eligibility for benefits.
  • Ask your employer whether early retirement is an option.
  • Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
  • Organize your financial documents and make sure your spouse or partner understands and can manage your family's finances.

Clinical trials

The Alzheimer's Association created the Longitudinal Early-Onset Alzheimer's Disease Study (LEADS) to learn more about the disease, including its causes and early detection possibilities. For more information about LEADS or to enroll, visit the Alzheimer's Association page here.

Resources for support

Key elements of Alzheimer's care are education and support. This is especially true in young-onset Alzheimer's given its unique challenges. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.

Remember, you're not alone. Many resources are available to assist you, your family and your caregivers in coping with this disease. Options for support may vary depending on where you live.

In the early stages of the disease, be sure that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.

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April 29, 2022 See more In-depth

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