Living With Early-Onset Alzheimer's Disease

What is early-onset Alzheimer's disease?

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.

Early-onset (also called young-onset) Alzheimer’s disease is a relatively rare form of the disease usually diagnosed in individuals under the age of 65 -- usually in their 40s and 50s. Less than five percent of all Alzheimer's disease patients have this type. 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 (ability to recognize and organize information when one sees something and then interpret what one sees; examples, reading, recognizing shapes, following a map)
• 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 the following:

• Most cases of early-onset Alzheimer's disease appears to be linked with a genetic defect on chromosome 1 or 14; late-onset Alzheimer's is not linked to this genetic defect. Also Down syndrome patients develop early onset Alzheimer’s dementia after the age of 40 because they have an inherent defect on chromosome 21. Some patients who have early onset Alzheimer’s disease have the ApoE 4/4 gene, which is a very strong genetic risk factor for disease development.
• 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, you can still maintain a meaningful and productive life. It is especially important to continue with activities and interests you 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 focus on 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/partner 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/partner 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. Investigate all possible options, including family and medical leave act (FMLA), an employer-sponsored disability program, early retirement and all other benefits available to you through your employer. Speak with your doctor about medical disability or medical retirement options so you do not get laid off for poor work performance.

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, Social Security Disability insurance 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.