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

Young-onset Alzheimer's disease is a rare form of dementia that affects people younger than age 65. The condition also is called early-onset Alzheimer's disease.

Most people with Alzheimer's are age 65 and older. Around 30 to 40 million people worldwide live with Alzheimer's disease. Young-onset Alzheimer's affects about 41 of 100,000 people between the ages of 30 and 64.

For most people with young-onset Alzheimer's, the cause is not related to any single gene. Researchers don't fully know why some people get the disease at a younger age than other people do. Factors such as family health history and certain gene changes may raise the risk.

If your parent or grandparent developed young-onset Alzheimer's, you may have an increased risk of the disease. Also, having a type of gene known as apolipoprotein E4 (APOE4) may play a role. APOE4 is a risk gene. This means it raises your chances of getting Alzheimer's, but it does not directly cause it.

Neither family history nor the risk gene APOE4 guarantees that you will get Alzheimer's. Many people with these risk factors never get the disease. However, many without these risk factors do develop Alzheimer's. Because these risk factors can't predict if you'll get the disease, genetic testing for APOE4 is not recommended if you don't have symptoms.

Alzheimer's disease is complex and many factors beyond risk genes or family history increase the risk of developing the disease. These include other health conditions, lifestyle choices and environmental factors.

Less often, young-onset Alzheimer's is caused by changes in a gene, called a genetic mutation. Genetic changes can be passed from parent to child. If a genetic mutation directly causes a disease, it is called a causal gene. Having a causal gene means you are likely to develop the disease.

Three different genes may have a mutation that causes young-onset Alzheimer's disease. These genes are APP, PSEN1 or PSEN2. A person who gets at least one copy of a mutated gene is likely to develop Alzheimer's disease before age 65.

About 10% or less of people with young-onset Alzheimer's carry a genetic mutation that causes the disease. Among all people with Alzheimer's disease, fewer than 1% carry one of these causal genes.

Genetic testing for these gene changes is available. If you have a family history of young-onset Alzheimer's, you may want to take that step. The longer a mutation has appeared in a person's family history, the higher the chance is that genetic tests will find the specific gene causing the disease. But genetic counseling is recommended before you get tested to learn the pros and cons of genetic testing.

For example, if you know that you carry a young-onset gene, you may be able to take steps that make it easier for you and family members to cope with the effects of the disease. On the other hand, finding out you have a gene for young-onset Alzheimer's may affect your ability to get long-term care, disability and life insurance.

You might be able to take part in a research study if you have young-onset Alzheimer's linked to one of the three genes. Or if you carry a form of these genes but have no symptoms. Talk with your healthcare professional to find out more. By studying the young-onset form of Alzheimer's, researchers hope to learn more about the causes of the disease and how it changes over time. This research also may lead to new treatments.

Memory loss or other symptoms of dementia may be caused by a number of conditions. So it's important to get diagnosed quickly and correctly. A diagnosis of young-onset Alzheimer's may take longer because it's not expected in younger adults. Or you might be told you have the disease when you don't. These problems can lead to delays in care.

Also, it's important to rule out treatable conditions that can cause dementia-like symptoms.

An early diagnosis also is important for personal and professional reasons. For you and your family, the diagnosis is needed to help your family respond with appropriate understanding and compassion. It also can give you and your family more time to make important decisions about financial and legal issues.

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

An early diagnosis also may allow you to take medicines that target the buildup of amyloid in the brain caused by Alzheimer's. These are called antiamyloid medicines. They appear to be most effective when given in the early stages of Alzheimer's disease.

Alzheimer's disease has a serious 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. Because of their young age, people with young-onset Alzheimer's may find that others do not believe that they have the disease. They may feel isolated from friends or co-workers. They may face a loss of income for their families.

Talk to your employer before your condition noticeably affects your ability to do your job. What you can do:

• Find out if you can switch to a position that better suits your change in abilities.
• Make sure you and your spouse, partner or caregiver understand your work-related benefits. Find out whether your workplace has an employee assistance program.
• Explore benefits you may get through the Americans with Disabilities Act, Family and Medical Leave Act, and COBRA.
• If you feel overwhelmed, consider reducing your hours or taking time off.

Spouses or partners of people diagnosed with young-onset Alzheimer's often feel a sense of loneliness or loss as they face the possibility of spending many years without their active partner.

Losing the romantic part of the relationship and changing to the role of caregiver also can make things complicated. Try to:

• Talk about what kind of help you need from each other. Talk about changes you're experiencing and ways your needs have changed. Don't be afraid to ask for help.
• Continue doing things you enjoy with your partner and adapt as needed. Find new activities that you can enjoy together.
• Keep a folder of resources that you may need as the disease continues.
• Find a couples counselor who works with the issues you're having, such as sexual relations and changing roles in the relationship.

A diagnosis of young-onset Alzheimer's also can be hard for children. Younger children may not understand the disease and its impact. Older children may be embarrassed, resentful or angry about a parent's illness or changes in their relationships. 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 or see a family counselor. 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 for sharing your wisdom and memories.

A person with young-onset Alzheimer's usually has to stop working. The loss of income is a serious concern. Finances get even tighter if a spouse or partner quits a job to become a full-time caregiver.

Benefits that are often available to people age 65 and older may be an option for people diagnosed with young-onset Alzheimer's. It's important to learn what resources you can use. 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 that your spouse or partner understands and can manage your family's finances.

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

Key elements of Alzheimer's care are education and support. This is especially true for young-onset Alzheimer's given its unique challenges. Support groups can help you find resources, gain a deeper understanding of the disability and learn ways to adapt.

Remember, you're not alone. Many resources are available to help you, your family and your caregivers cope 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, partner or caregivers do research and make a plan for managing your condition as it gets worse. Knowing that you have a plan that includes support and resources can help everyone in the future.