How Fear of a Diagnosis Affects People at Risk of Alzheimer’s Disease

Fear of an Alzheimer’s disease diagnosis comes in many forms.

Beyond the fear of developing Alzheimer’s itself, there’s:

• fear of stigma
• fear of the effect it may have on your family
• fear of needing a caregiver
• fear of losing a sense of purpose

Fear and worry can cause stress and anxiety, and this can affect your overall quality of life. Anxiety can turn into other mood disorders, like depression. In severe cases, dementia worry can result in a misdiagnosis and the use of unnecessary medications.

Self-sabotage may also be an issue. Studies have shown that anxiety can increase your risk of developing Alzheimer’s disease. Anxiety may also make you delay screening for an early diagnosis that could otherwise help you slow down disease progression.

For those with a family history, the anxiety of potentially developing Alzheimer’s disease is “completely understandable,” Nate Chin, MD, a geriatrician at UW Health and Medical Director of the Wisconsin Alzheimer’s Disease Research Center in Madison, Wisconsin, tells Healthline.

But Chin, who hosts a podcast called “Dementia Matters,” also explains that it’s important that people understand brain diseases and their diagnoses because there’s a lot of misunderstanding around them. For example, Alzheimer’s disease is not the same as dementia.

As for those who may be hesitant to seek care, Chin recommends a big-picture approach: “Diagnosis does not define them, change what they have accomplished in their lives, or fully explain their lived experience of symptoms.”

If you find yourself constantly worrying about a future Alzheimer’s diagnosis, it’s important to find ways to cope before it affects your health.

Get screened

An Alzheimer’s disease diagnosis is tricky. Even with modern testing, there’s still “some uncertainty that a family history of Alzheimer’s disease is truly Alzheimer’s,” Chin says.

He finds that this uncertainty can sometimes be reassuring to people. Though family history is a risk factor, it’s not a guarantee.

“Many people have family histories of Alzheimer’s disease, and many people have [a version of the APOE gene called APOE4] that can increase their risk of developing Alzheimer’s,” explains Chin, “but not every person with APOE4 develops Alzheimer’s disease. Increased risk is not the same thing as actually getting the disease.”

While fear may make you delay undergoing screening for an early diagnosis, screening is an important step to ease anxiety, no matter the outcome. Research has suggested that an early diagnosis and intervention can slow down disease progression.

If you notice any of the warning signs of Alzheimer’s, schedule an appointment with your doctor.

Learn about the warning signs

The signs of Alzheimer’s disease can mimic signs of cognitive decline that are typical with aging. But people with Alzheimer’s display certain ongoing behaviors that tend to worsen over time. These include:

• memory loss that affects daily life
• trouble with familiar tasks, like using the toaster
• difficultly speaking or writing
• becoming disoriented about times or places

These signs don’t always mean that a person has Alzheimer’s. Your doctor can determine whether more tests are needed.

If you do end up with a diagnosis, Chin says that you should keep in mind that some of the signs and symptoms are reversible.

After a complete evaluation of your symptoms, you’ll be able to address reversible factors. These include:

• mood disorders
• medication side effects
• thyroid abnormalities
• vitamin deficiencies
• sleep issues
• certain chronic health conditions

“Addressing these things may help with symptoms and certainly can help strengthen brain performance,” says Chin.

And once diagnosed, you’ll also be able to receive early treatment and make more informed decisions for low cost care.

Get accurate information

Luke Stoeckel, PhD, a licensed clinical neuropsychologist at the National Institute of Health’s (NIH) National Institute on Aging, strongly recommends that you “educate yourself about the disease, its progression, and available resources” if you’re at risk of Alzheimer’s disease.

He suggests speaking with your doctor or a neurologist for an explanation of the condition, as well as looking into resources such as the Alzheimer’s Disease Education and Referral (ADEAR) Center to learn about the latest research, treatments, and care options.

Accurate and up-to-date information can help you make more informed decisions and set realistic expectations.

Work on the ‘controllable’ risk factors

Though you can’t control family history, age, and genetics, having these risk factors doesn’t mean an Alzheimer’s disease diagnosis is certain.

There are several ways you can manage your overall risk:

• Diet: Eat a balanced diet loaded with fruits and vegetables, nuts, whole grains, and olive oil. Following the MIND diet may help prevent dementia and loss of brain function as you age.
• Exercise: Studies have shown that physical activity reduces the risk of dementia.
• Cognitive enrichment: Perform cognitive exercises to improve overall brain health as you age.
• Stay social: Continue to participate in the activities that you enjoy. They can provide a sense of purpose and fulfillment. Friendships are also likely to benefit your overall health.
• Reduce stress: Try stress-reducing activities such as yoga, meditation, or exercise. Professional counseling or therapy can also help you cope with stress or anxiety.
• Quit smoking, if you smoke. A doctor can help you make a cessation plan.

The experience of Alzheimer’s disease is not the same now as it was 20 years ago. Doctors know a lot more about care, support, and treatments. “The course of disease looks different,” says Chin.

If you find yourself worrying about the possibility of a future diagnosis, talk with a doctor. Next, try to educate yourself about Alzheimer’s disease and current research.

You’re already on the right track by reading this article.