Young-Onset Alzheimer’s (Early-Onset Alzheimer’s)
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What is young-onset Alzheimer’s disease?
Young-onset Alzheimer’s disease (sometimes called early-onset Alzheimer’s) is when Alzheimer’s affects a person younger than 65 years of age. People who have young-onset Alzheimer’s may develop symptoms as early as their 30s or 40s, but most are in their 50s or 60s.
How common is young-onset Alzheimer’s?
Young-onset Alzheimer’s is not very common. Less than 5% of people who have Alzheimer’s disease have young onset.
How is young-onset Alzheimer’s different from late-onset Alzheimer’s?
When Alzheimer’s starts isn’t the only difference between young-onset and “regular,” or late-onset, Alzheimer’s. Other differences include the following:
- Genetics: Healthcare providers and researchers have discovered that, in some people, certain rare genes may cause Alzheimer’s symptoms to start early. When genetics is the cause, the genes often have been passed down through family members and may affect several generations. This is why young-onset Alzheimer’s is sometimes called “familial” Alzheimer’s.
- Diagnosis: It may take longer for a healthcare provider to diagnose young-onset Alzheimer’s. Even though the symptoms of young-onset Alzheimer’s are the same as the symptoms for late‑onset Alzheimer’s, most healthcare providers don’t look for or suspect Alzheimer’s disease in younger people. If you are having memory problems, be sure to talk to your healthcare provider about all your symptoms.
- Coping: Because people who have young-onset Alzheimer’s are younger, they may still be raising children, may have jobs, and may be active in the community when symptoms start. This can make it even harder to deal with the changes that Alzheimer’s disease brings to family and personal life. People who have young onset disease are more likely to feel angry, frustrated, and/or depressed.
Tips for living with young-onset Alzheimer’s
First, it’s important to know that you are not alone. Alzheimer’s disease affects each person differently, but there are things you can do to stay active and involved in your own health care, with family and friends, and at work.
Take care of yourself
- Follow your healthcare provider’s advice about diet and exercise. If you take medicine, be sure to take the right amount at the right time. Contact your healthcare provider if you have questions about your health or treatment.
- Consider joining a support group. To find one near you, contact your local Alzheimer’s Society chapter.
- Share your thoughts and feelings with others. Don’t keep it all inside. If you don’t feel comfortable talking to family or friends, you can always talk with your healthcare provider, clergy members, or a professional counselor.
Be open with family and friends
- Talk to your spouse and/or other close family members about your thoughts, fears, and wishes. Your family can help you plan for the future, including decisions about health care and legal and financial issues.
- Talk openly with children about your disease. Understand that they may be feeling concerned, confused, upset, or afraid. If appropriate, involve your children in discussions and decisions that affect the whole family.
- Your friends or neighbors might not know how to react to your diagnosis. They may feel like they don’t know what to say or how to help, and may be waiting for you to make the first move. Invite friends to spend time with you. And don’t be afraid to ask for help when you need it.
Manage your career
- Know that, as your symptoms progress, you may find it difficult to perform certain work tasks.
- Plan when and how to tell your boss, supervisor, or manager.
- Tell your manager that you’d like to continue working as long as possible, and ask your manager to be flexible. Possibilities include working fewer hours, reducing responsibilities, or changing positions.
- Work with your human resources department to make sure you’re taking advantage of all your employee benefits. Research options such as early retirement.
FOR MORE INFORMATION
Alzheimer Society of Canada
Alzheimer Society of Nova Scotia
Alzheimer Society of PEI
Caregivers Nova Scotia