Early On-Set Alzheimer's
By: the Alzheimer's Association
I’m too young to have Alzheimer’s disease
Alzheimer’s is not just a disease of old age. Early-onset is Alzheimer’s disease that affects people who are under age 65. Many people with early-onset are in their 40s and 50s. Up to 10 percent of people with Alzheimer’s have early-onset. In the United States, that’s about 400,000 people.
Link to genes
Most people with early-onset have the common type of Alzheimer’s, which is not directly linked to genes. Doctors do not know why symptoms appear at an unusually young age in these cases. In a few hundred families worldwide, scientists have found several rare genes that directly cause Alzheimer’s. People who inherit these rare genes tend to develop symptoms in their 30s, 40s and 50s.
Living with early-onset Alzheimer’s
If you have early-onset Alzheimer’s disease, it’s important to know that your life is not over. You can still live a meaningful and productive life. You can still take part in activities you enjoy. You can still find comfort in your family and friends. Living with Alzheimer’s does mean dealing with life changes sooner than you had planned.
It’s important to know that:
• The disease affects each person differently, and symptoms will vary
• You will have good days and bad days
• You are not alone
• People who understand what you are going through can help you and your family
What’s the difference between early-onset Alzheimer’s and early-stage Alzheimer’s?
Early-onset is a diagnosis of the disease when the person is younger than 65. Early-stage is the early part of Alzheimer’s disease, when problems with memory and concentration may begin to appear in a doctor’s interview or medical tests.
Feelings After the diagnosis, you may be going through a range of emotions:
Your life is taking a different course than the one you and your family had planned
The diagnosis seems impossible to believe
You may feel sad or hopeless about the life changes you’re facing
You wonder what the future holds for you and your family, your friends and your job
You can’t cure the disease or make yourself understood
No one seems to understand what you’re going through
• Sense of loss
It’s hard to accept changes in your abilities, or status in your community or job
What you can do about your feelings:
• Find ways to express your frustrations and emotions. Don’t keep your feelings to yourself.
• Join an Alzheimer’s Association support group. Some are just for those with early-onset.
• Work with a well-qualified counselor.
• Share your feelings with your friends and family, and someone who can help with spiritual needs.
• Visit the message boards and chat rooms on the Alzheimer’s Association Web site at http://www.alz.org/ and other Alzheimer-related Web sites.
* *While the Alzheimer’s Association Web site at www.alz.org contains reliable information, confirm with your doctor the accuracy of information you receive on the Internet, especially on message boards or in chat rooms.
Family Your spouse
Most people with Alzheimer’s disease continue to live in the home even as the disease progresses. Your spouse may have to manage the household and your care. He or she may feel a sense of loss over the changes the disease brings to your relationship. You may both experience differences in how you relate to each other sexually.
What you can do to help your spouse:
• Continue to take part in all the activities that you can
• Adapt activities to fit what you are comfortable doing
• Talk with your spouse about how he or she can assist you
• Work with your spouse to put together a file with information you may need later about caregiver services and their costs, including housekeeping and respite (caregiver relief ) care
• Discuss with a professional counselor any role changes in the relationship as well as sexuality issues
• Continue to find ways for you and your spouse to fulfill the need for intimacy
• Encourage your spouse to attend a support group for caregivers
Children often experience a wide range of emotions. Younger children may be afraid that they will get the disease or that they did something to cause it. Teenagers may become resentful when they have to take on more responsibilities for helping around the home. Or they may feel embarrassed that their parent is “different.” College-bound children may be reluctant to leave home.
What you can do to help your children:
• Talk openly about the changes you are experiencing because of the disease.
• Find out what their emotional needs are. Find ways to support them, like meeting with a counselor who specializes in children who have a loved one with Alzheimer’s.
• Notify school social workers and teachers about your situation. Give them information about the disease.
• Invite children to attend support group meetings. Include them in counseling sessions.
• Record your thoughts, feelings and wisdom in writing, audio or video. Your children can use this counsel when they grow older. Important life stages you might want to discuss include:
Friends, co-workers and neighbors may not understand what is happening to you. Some may keep their distance or resist keeping in touch. Often they may not know what to do or say. They may be waiting for you to reach out to them.
What you can do to help your friends:
• Share your experience of living with Alzheimer’s disease
• Invite them to Alzheimer’s Association education programs
• Continue social activities as much as possible
• Let them know when you need help and support – tell them what they can do
You may find work-related tasks more difficult to perform as the disease advances. Talk to your doctor to plan when and what you’ll tell your employer about the disease, and at what point you should no longer work. Your local Alzheimer’s Association office has information about the disease that you can share with your employer.
What you can do about your job:
• Continue to work as long as you and your doctor feel you are able
• Use a daily planning calendar, memos and other memory aids to help you organize the details of your job
• Ask your employer if you can switch to a position that better matches your abilities and strengths – or consider reducing your work hours
• Look into early-retirement options
• Educate yourself, as well as your spouse or close friend or relative, about the benefits available to you and how to claim them
If your earnings are the family’s main source of income, you may be concerned about financially supporting your family now and in the future. Insurance and other benefits may be more difficult to obtain. Future health care costs should be considered.
What you can do about money matters:
• Meet with a qualified financial consultant or an attorney to discuss current and future investments, insurance and retirement options. See if long-term care insurance is still an option.
• Find out about government assistance programs such as Social Security, Medicare and Medicaid.
• Review your employer-provided or personal disability insurance policies.
• Organize financial documents and other important information in one place. Go over them with your spouse.
• Birth certificates• Insurance policies
• Retirement accounts
• Social security information
• Research college scholarship and grant money for your children.
Two of the most important ways you can take good care of yourself are to stay healthy and safe.
Take good care of your body.
What you can do about your health:
• Get regular check-ups
• Exercise regularly, with your doctor’s approval
• Rest when you are tired
• Eat properly
• Take any prescribed medications according to directions
• Cut down on alcohol – it can make your symptoms worse
• Take care of your spiritual needs• Reach out for help when you need it
• Reduce stress in your daily life, and learn new ways to relax
Symptoms of Alzheimer’s, like loss of memory and decision-making ability, can bring about new safety needs.
What you can do about your safety:
• Keep important phone numbers nearby
• Post reminders to lock doors and turn off electrical appliances
• Arrange for an in-home helper to assist you when your spouse or caregiver needs to be away from home
• Arrange for other ways to get around when it is no longer safe for you to drive
• Enroll in Alzheimer’s Association Safe Return® for services to assist you should you ever wander
When you are in the early stages of Alzheimer’s, it’s important to take steps right away to plan for the future.
What you can do to plan for the future:
• Work with a well-qualified attorney, accountant and/or a care manager to make financial and legal plans.
• Legally appoint a person you trust to make financial and health care decisions on your behalf when you cannot. Tell the person your wishes for the future, including where you want to live and what types of treatments you want or don’t want.
• Find adult day care programs and residential care settings that know how to assist people with early-onset Alzheimer’s.
• Gather all of the thoughts, memories and family history you want to pass on to your loved ones. Work together with your family to create journals, scrapbooks or home movies.