Glenn Smith, Ph.D.
Early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than age 65. Glenn Smith, Ph.D., a neuropsychologist at Mayo Clinic, Rochester, Minn., answers questions about this condition.
How common is early-onset Alzheimer's?
Of all the people who have Alzheimer's disease, only about 5 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's very uncommon. It's more common to see someone in his or her 50s who has the disease.
What causes it?
It often runs in families. Many people with early-onset Alzheimer's have a parent or grandparent who also developed Alzheimer's at a younger age. A significant proportion of early-onset Alzheimer's is linked to three genes.
These three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have a genetic mutation in one of those three genes — the APP, PSEN 1 or PSEN 2 — it would be common for you to develop Alzheimer's before age 65.
If early-onset Alzheimer's runs in my family, should I get tested for it?
That's a personal decision that only you can make. Anyone who's considering it should pursue genetic counseling — to examine the pros and cons beforehand. For example, it may be helpful to consider how a positive test may affect your eligibility for long term care, disability and life insurance. On the other hand, if you know you carry a form of the early-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.
Does early-onset Alzheimer's progress at a faster rate?
There's a perception that it does, but it's not backed up by hard data. It depends on what endpoint you're using in your measurement. If your endpoint is admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses or partners have so many other things on their plates.
For example, people who have early-onset Alzheimer's often still have children at home. They or their spouses or partners may have elderly parents that need care, too. Often, people may find themselves overwhelmed with caring for elderly parents, the loved one with early-onset Alzheimer's and their children all at the same time.
Fortunately, resources are available to support people with Alzheimer's to care for themselves and function on their own as long as possible. Many resources are also available for caregivers — support that can be essential when dealing with early-onset Alzheimer's.
How important is it to obtain an accurate diagnosis?
Accurate diagnosis is critical so that you can explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule. For family reasons it is even more crucial. The diagnosis is fundamental in helping the family respond with appropriate understanding and compassion. In addition, a complete evaluation will rule out reversible forms of dementia that might improve with treatment.
What types of problems occur more often in early-onset Alzheimer's?
Alzheimer's disease has a tremendous impact at any age. But we don't expect to see dementia at a young age, so problems emerging at work or home may be misunderstood. People with early-onset Alzheimer's may lose relationships or jobs instead of being identified as medically ill or disabled.
What suggestions do you have for coping at work?
Before your condition significantly affects your ability to effectively do your job, talk to your employer.
- You may be able to switch to a position that better suits your emerging limitations.
- Familiarize yourself and your spouse, partner or caregiver with your benefits and find out whether an employee assistance program is available.
- Explore what benefits may be offered to you under the Americans With Disabilities Act.
- If you feel overwhelmed, consider reducing your hours or taking time off.
What coping suggestions do you have for couples?
The loss of intimacy is something poignant with early-onset Alzheimer's. Many people who develop late-onset Alzheimer's have already been widowed. But couples in their 40s or 50s are often in the middle of their lives together. Spouses or partners face the possibility of spending many years without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship. Try to:
- Commit to communicating about changes you are experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
- Find new activities that you both are comfortable with and can both enjoy together.
- Discuss resources that you may need as the disease progresses and put together a folder so these resources can be easily located.
- Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.
How do you suggest involving kids?
A diagnosis of early-onset Alzheimer's can also be difficult for your children who may not have the life experience to understand what you may go through. Children may blame themselves, become angry or react in any number of ways. 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 and invite your kids to some of your counseling sessions. Also make your child's school counselor and social worker aware of your condition.
- Make a record of your thoughts, feelings and experiences in writing, on video or in audio for your children. They will appreciate that you've shared your wisdom and memories.
Are there financial issues to consider?
People with early-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers. Some medical benefits and many social-support programs won't provide assistance unless the person with Alzheimer's is older than age 65. Younger people may need special waivers to get into such programs.
- Talk with a financial planner and an attorney to help you plan for your future financial needs.
- 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 your spouse or partner understands and can manage your family's finances.
What's most important to know?
The key treatments in Alzheimer's are education and support. This is especially true given the unique social challenges of early-onset Alzheimer's. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt to the situation.
Remember, you're not alone. Many resources are available to assist you, your family and caregivers to cope with this disease. Options for support may vary depending on where you live. Be sure that you and your spouse or partner do the research and establish a plan for managing the progression of your condition in the early stages of the disease. Knowing you have a plan and have identified support and resources will help everyone greatly in the future.