WHAT IS IT?
Living With Early-Onset Alzheimer’s Disease
Alzheimer's disease is a progressive brain disorder in which nerve cells in the brain (neurons) degenerate and die, making it difficult for the brain's signals to be transmitted properly. A person with Alzheimer's disease has problems with memory, judgment and thinking, which makes it hard for the person to work or take part in day-to-day family and social life. Changes in mood, personality and behavior also may occur.
There are two basic types of Alzheimer's disease: early-onset Alzheimer's disease and late-onset Alzheimer's disease. Late-onset Alzheimer's disease is the much more common type, generally beginning after age 65.
What is early-onset Alzheimer's disease?
This is a rare form of Alzheimer's disease in which individuals are diagnosed with the disease before age 65, usually in their 40s and 50s. Less than five percent of all Alzheimer's disease patients have this type. It is often said that it is less than two percent. Symptoms of early-onset Alzheimer's disease are similar to those of late-onset Alzheimer's disease, but the person often is still active with work, family and social activities when the symptoms begin. Symptoms of Alzheimer's disease include:
• Memory loss
• Confusion
• Restlessness
• Misplacing things
• Trouble performing familiar tasks
• Changes in personality and behavior
• Poor or decreased judgment
• Impaired communication
• Inability to follow directions
• Problems with language
• Impaired visuospatial skills
• Emotional apathy
• Social withdrawal and less willingness to interact with others
• Loss of motivation or initiative
What are the differences between early-onset and late-onset Alzheimer's disease?
In addition to age, there are other differences between early-onset and late-onset Alzheimer's disease, including:
• Younger people who develop Alzheimer's disease tend to have more of the microscopic changes found in the brains of people with Alzheimer's disease. These changes include twisted nerve cell fibers, known as neurofibrillary tangles, and a sticky protein called beta amyloid, which forms structures called plaques. Plaques and tangles damage the healthy brain cells that surround them, causing the brain to waste away and shrink. Some experts believe that younger brains need to suffer more damage before the person starts to show symptoms, so this may not reflect a true difference in the nature of the disease.
• A substantial majority of early onset Alzheimer's disease appears to be linked with a genetic defect on chromosome 14, to which late-onset Alzheimer's is not linked.
• A condition called myoclonus — muscle twitching and spasm — is more commonly seen in early-onset Alzheimer's disease than in late-onset Alzheimer's disease.
• Some research suggests that people with early-onset Alzheimer's disease decline at a faster rate than do those with late-onset Alzheimer's disease.
• Younger people who are diagnosed with Alzheimer's disease tend to be more physically fit and active, and many still have family and career responsibilities. As a result, they tend to react differently to the disease, and may be more likely to feel powerless, frustrated and depressed.
Tips for living with early-onset Alzheimer's disease
People with early-onset Alzheimer's disease must understand that life is not over. While it's true that your life will change, particularly as the disease progresses, there are things you can do to maintain a meaningful and productive life. It is especially important to continue with activities and interests you can still enjoy, and take comfort in the support of friends and family.
Here are some tips for living with Alzheimer's disease:
Yourself
• Alzheimer's disease affects each person differently. You will have good days and bad days. Try to maximize the good days and not dwell on the bad days.
• Remember, you are not alone. Consider joining a support group. Call your local chapter of the Alzheimer's Association for information on support groups for people with early-onset Alzheimer's disease.
• Don't keep your fears and feelings inside. Seek professional counseling, and/or share your feelings with your friends, family or a clergy member.
• Take care of yourself. Get regular check-ups, and follow your doctor's recommendations about diet, exercise and taking medications.
Family and friends
• Talk openly with your spouse about issues that are important to you, such as finances, household and child-rearing responsibilities, and sexual intimacy. Look toward future care-giving needs, and try to make plans and decisions together, ahead of time. Encourage your spouse to join a caregiver's support group.
• Talk openly with your children about the disease and your symptoms. Understand that your disease affects your children, as well. In addition to being concerned about you, your children may have understandable fears about developing Alzheimer's disease themselves. When appropriate, include your children in making decisions that affect the whole family. Encourage them to become involved in a support group. Consider recording your thoughts, feelings, wisdom and memories, so you may pass them on to your children.
• Don't tune out your friends. Share your experience of living with Alzheimer's disease. Stay as active as possible for as long as possible. Invite your friends to attend educational programs about Alzheimer's disease.
Career
• As your disease progresses, you may find job-related tasks more difficult to perform. Plan when and what you will tell your employer about the disease, and at what point you should no longer work.
• Make adjustments so that you may continue to work as long as possible. This will help to maintain your income and independence, and boost your self-esteem. Consider asking to be placed in a position that better matches your skills and capabilities, or to reduce your work hours.
• Investigate all possible options, including early retirement, as well as ways to access all benefits available to you through your employer.
Financial and legal matters
• Plan ahead for financial needs, knowing that eventually you will have to leave your job and will lose income. Meet with a financial counselor who can help you investigate insurance, investments and other financial options.
• Talk with your family and doctor about what medical treatments you want to receive in the event you become unable to communicate your wishes. You may wish to prepare an advance directive, a legal document that outlines your wishes for future medical treatment.
• Organize all of your financial and legal documents, as well as other important information (insurance policies, Social Security information, wills, etc.) in one place, and let your spouse and/or children know where to find them.
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www.clevelandclinic.org/health/.
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