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The Challenges of Early-Onset Alzheimer's | Fedelta Home Care, Seattle WA

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August 19, 2015

The Challenges of Early-Onset Alzheimer's

Husband and wife challenged by Alzheimer's

A 16-year-old high school student (for anonymity we’ll call her Sarah) recently stood in front of a packed ballroom in Seattle during A Reason to Hope breakfast benefiting the Alzheimer’s Association. She was there to talk about the effect Alzheimer’s had had on her young life. When she was just 12 years old, her father, just 45 years old, was diagnosed with the disease. He died four years later. She talked about how her tall, handsome father was completely debilitated by the disease, to the point where he was literally afraid of his own reflection. When he saw himself in the mirror, he couldn’t understand why there was a strange man in his home.

Although most people associate Alzheimer’s with the elderly, the Alzheimer’s Association estimates that as many as 200,000 Americans under the age of 65 have the disease – referred to as early-onset Alzheimer’s. While all diagnoses of Alzheimer’s are devastating, early-onset is particularly cruel as it affects people at a point in their lives when they are often at their peak of their careers and raising a family.

Early-onset Alzheimer’s can be particularly hard on caregivers. It often creates even greater burdens for families than “sporadic” Alzheimer’s, the most common form of the disease. Trying to care for a spouse with the disease – who most likely can no longer work – while raising a family brings a whole new set of challenges to caregiving. As with the story of Sarah above, the duty of caregiver often falls to one’s children.

Another challenge created by early-onset Alzheimer’s is that because no one expects a younger person to have the disease, it may be misdiagnosed. People may not understand or have sympathy for someone living with it. Employers may think someone is simply “losing it” or a spouse may become irritated that their partner in life seems to be letting important tasks go undone.

Caregivers often hear people say “S/he’s too young to have Alzheimer’s.” That’s why it’s important for them to become educated about the disease. For instance, for most people, early-onset Alzheimer’s has a genetic component to it, meaning they likely inherited the disease. The genetic connection is much stronger in early-onset Alzheimer’s, meaning that if you have a parent or grandparent with the disease, your chances of getting it yourself are much higher compared to those who have a parent or other relative with sporadic Alzheimer’s.

Scientists have developed a test that can tell you if you have the genetic mutation that greatly increases your chance of getting the disease. Getting tested is a very personal decision. Before deciding on whether or not to get the test, you may want to speak with a healthcare professional about your options. For instance, a positive result may affect your ability to obtain life or disability insurance. On the other hand, getting tested could lead to an accurate diagnosis, allowing you to plan ahead, ensure your family will be taken care of, and get treatment. Although there is no cure for Alzheimer’s, there are some treatment options available that may help ease its symptoms. There are also certain behavior medication that may help, such as eating a more brain-friendly diet (rich in antioxidants and Omega-3s), getting enough exercise and stimulating the mind through learning a new skill.

Washington University in St. Louis is currently conducting clinical trials for people with Autosomal Dominant Alzheimer’s Disease (ADAD), the scientific name given to familial or early-onset Alzheimer’s. The Dominantly Inherited Alzheimer Network Trails Unit (DAIN-TU) is testing drugs to see if there is any way to prevent, delay, or possibly even reverse the effects of the disease in the brain. Study subjects are people at risk for the disease (defined by someone who has either a parent or a sibling with ADAD). For more information, visit http://dian-tu.org.

If caregiving is becoming overly burdensome, consider hiring an in-home caregiver. Fedelta’s Alzheimer’s and Dementia program can provide caregivers specially trained in caring for people with memory loss. If you’d like a complimentary in-home assessment to see if home care is a good option, give us a call. One of our Care Managers will evaluate your loved one’s needs and develop a Plan of Care designed specifically for them.

Reprinted with permission. Copyright 2015, IlluminAge