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

What is young-onset Alzheimer's?

Young-onset Alzheimer's disease is an uncommon 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. About 1 in 9 people age 65 and older in the United States has Alzheimer's disease. About 110 of every 100,000 adults between ages 30 and 64 have young-onset Alzheimer's.

Family history of disease

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 others do.

Risk factors for young-onset Alzheimer's disease include a family history of the condition. Having a parent or grandparent with young-onset Alzheimer's increases the risk of developing the disease. But a family history of the disease doesn't mean you will necessarily develop the disease.

Genes that cause young-onset Alzheimer's

Less commonly, young-onset Alzheimer's is caused by a specific error in a gene, called a genetic mutation. Genetic mutations can be passed from parent to child.

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

About 11% of people with young-onset Alzheimer's carry a genetic mutation that causes disease. But among all people with Alzheimer's disease, fewer than 1% carry one of these causal genes.

Genetic testing for these mutations is available. If you have a family history of young-onset Alzheimer's, you may want to do genetic testing. But genetic counseling is recommended for learning about the pros and cons of being tested before taking that step.

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

If you have young-onset Alzheimer's linked to one of the three genes or if you carry a form of these genes without symptoms, talk to your healthcare professional 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. This research also may lead to new treatments.

Accurate diagnosis is critical

Memory loss or other symptoms of dementia may be caused by a number of conditions. So it's important to get a prompt and accurate diagnosis. A diagnosis of young-onset Alzheimer's may be delayed because it's not expected in younger adults. Or the disease may be misdiagnosed. These problems can lead to delays in care.

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

A prompt diagnosis also is 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 also can give you and your family more time to make important decisions about financial and legal issues.

At work, a prompt 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 the use of anti-amyloid medicines. These therapies appear to be most effective when given in the early stages of Alzheimer's disease.

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. 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 family.

What to do at work

Before your condition notably 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 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.

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. Talk about changes you're experiencing and ways your needs have changed. Don't be afraid to ask for help.
Continue participating in activities you enjoy with your partner and adapt as necessary. Find new activities that you can enjoy together.
Keep a folder of resources that you may need as the disease progresses.
Find a counselor who works with couples facing issues you feel challenged by, such as sexual relations and changing roles in the relationship.

How to involve kids

A diagnosis of young-onset Alzheimer's also can be difficult 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.

Financial issues

A person with young-onset Alzheimer's usually has to quit work, and 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 typically 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.

Clinical trials and observational research

The Alzheimer's Association created the Longitudinal Early-Onset Alzheimer's Disease Study (LEADS) to learn more about the disease. The study is investigating causes and possible early detection. 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. 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, partner or caregivers do research and establish a plan for managing the progression of your condition. Knowing that you have a plan and have identified support and resources will help everyone in the future.