8.22.16 Mary Yamin-Garone
Good afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.
Today’s topic is “The Truth about Early Onset Alzheimer’s.”
Early-onset Alzheimer’s is a rare form of AD that strikes individuals between the ages of 30 and 65. According to the Alzheimer’s Association, early-onset accounts for roughly 10 percent of all cases in the United States.
Who gets early-onset Alzheimer’s?
In the U.S., it’s estimated that roughly 200,000 people have early AD. Many of those diagnosed with early onset Alzheimer’s are in their 40s and 50s. They have families and careers. Some are even caregivers.
What causes it?
Doctors don’t understand why most cases of early onset Alzheimer’s appear at such a young age.The majority of those with early-onset have sporadic Alzheimer’s disease, which is the most common form and is not attributed to genetics. In a few hundred families worldwide, however, scientists have pinpointed several rare genes that directly cause the disease. People who inherit these rare genes tend to develop symptoms in their 30s, 40s and 50s. When Alzheimer’s disease is caused by deterministic genes, it’s called “familial Alzheimer’s disease.” Many family members in multiple generations are affected.
Early-onset Alzheimer’s that runs in families is linked to three genes that differ from the APOE gene that can increase your risk of AD 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 genes—the APP, PSEN 1 or PSEN 2—you may develop the disease before you’re 65.
If early-onset Alzheimer’s runs in your family should you get tested for it?
Anyone who’s thinking about getting tested should consider genetic counseling to examine the pros and cons. It may be helpful to contemplate how a positive test may affect things, such as long-term care eligibility and disability and life insurance. Then again, if you know you carry a form of the early-onset genes, steps can be taken to make things easier for all involved to cope with the effects of the disease.
Does early-onset Alzheimer’s progress faster?
While it’s perceived to be, it’s not backed up by hard data. The answer depends on what endpoint is used when measuring. If the endpoint is going into sa nursing home, that may happen earlier for someone with early-onset. That’s only because their spouses or partners may have more to deal with than older spouses, such as children and jobs.
How important is it to get an accurate diagnosis?
An accurate diagnosis is critical. It’s fundamental in helping everyone involved respond with appropriate understanding and compassion. A complete evaluation also will rule out reversible forms of dementia that might improve with treatment. Since health care providers generally don’t look for Alzheimer’s disease in younger people, getting an accurate diagnosis of early onset AD can be a long and frustrating process. Symptoms may be incorrectly attributed to stress or there may be conflicting diagnoses from different health care professionals. People who have early onset Alzheimer’s may be in any stage of dementia–early, middle or late. The disease affects everyone differently and symptoms will vary.
If you or your loved one are experiencing memory problems, you should:
- Have a comprehensive medical evaluation with a doctor who specializes in Alzheimer’s. Getting a diagnosis involves a medical exam and possibly cognitive tests, a neurological exam and/or brain imaging. Call your local chapter of the Alzheimer’s Association for a referral.
- Write down symptoms of memory loss or other cognitive difficulties to share with your health care professional.
Are there financial issues to consider?
Those with early-onset Alzheimer’s often have to quit their jobs. This loss of income can be a serious concern. Finances get even tighter if spouses or partners also quit their jobs to take on the role of full-time caregiver.
Some medical benefits and many social-support programs won’t provide assistance unless the individual is over 65. Younger individuals may need special waivers to get into such programs.
So what can you do?
- Have a financial planner and an attorney help you plan for your future financial needs
- Find out if early retirement is an option
- Check into what benefits may be available through Social Security, Medicare or Medicaid
how can couples cope with early-onset Alzheimer’s?
Spouse or partners face the possibility of spending many years without an active partner. Losing intimacy and becoming a caregiver tends to complicate the relationship. It’s important to try to:
- Talk about the changes that are happening and how your needs have changed. Don’t be afraid to ask for help.
- Find new actitivies you both can enjoy.
- Seek out a counselor who works with couples facing challenging issues, such as sexuality and changing roles in the relationship.
How do you involve children?
A diagnosis of early-onset Alzheimer’s can be especially difficult for children. They may blame themselves and become angry and withdrawn. It’s important to:
- Find activities you can do together
- Be honest with them about what’s going on
- Find a support group for children and/or families
If you or your loved one have early onset Alzheimer’s you’re not alone. There are many ways to stay active and involved.
- Call the Alzheimer’s Association’s 24/7 helpline.
- Join an Alzheimer’s Association support group. Some are specifically for those suffering from early-onset AD.
- Be part of the Alzheimer’s Association’s message boards and online community.
- Get their free online tool, Alzheimer’s Navigator, to receive a customized action plan and step-by-step help on a variety of topics.
That’s all for today. Thanks for listening. I hope this information was helpful.
Join me next time for more Demystifying Alzheimer’s.