Early-onset Alzheimer’s accounts for a small portion of Alzheimer’s disease cases, yet its effects are equally devastating.

Just 5% of the approximately 5.5 million Americans living with Alzheimer’s disease are early onset, according to estimates from the Alzheimer’s Association. That means about 200,000 people developed the disease before the age of 65, and it often strikes in the 40s and 50s.

Alzheimer’s disease typically stems from aging. After the age of 65, the risk of the disease steadily increases. Symptoms for those with early-onset Alzheimer’s are largely the same, meaning the main difference is the age at which symptoms appear. They’re also more likely to experience muscle twitching and spasms, and they tend to decline at a faster rate than those with late-onset Alzheimer’s, according to the Mayo Clinic.

People with early-onset Alzheimer’s also struggle because they maintain responsibilities pertaining to their jobs and families. This results in feelings of powerlessness, frustration and often depression.

The causes of early-onset Alzheimer’s aren’t all known, but genes play a major role in the likelihood of developing the disease. Some people inherit genes from their parents that cause what’s called familial Alzheimer’s disease, where they’re certain to have Alzheimer’s. Others have a variation in a specific gene called APOE that increases their risk. Having the gene variation doesn’t guarantee development of the condition, though, according to experts.

Diagnosing Early-Onset Alzheimer’s

Accurate diagnosis of early-onset Alzheimer’s is critical, not only to establish appropriate treatment but also for personal reasons, according to the Mayo Clinic. It gives families the opportunity to make important decisions about financial and legal issues before major decline.

“If the person is the primary income for the family, it’s going to have a huge impact on that family,” said Monica Moreno, senior director of care and support at the Alzheimer’s Association. “Besides, that person may have been the one carrying the health care plan. They may have children going off to college.”

An accurate diagnosis, then, allows the person diagnosed the chance to discuss the condition with their employer. They can go over their health benefits, and figure out how they’ll handle the job as the disease progresses. Some solutions include reducing hours, taking time off or switching to a position more suitable for limitations associated with the disease.

Still, getting an accurate diagnosis can be difficult. Oftentimes, symptoms are linked to mid-life medical conditions like stress. The person in question may also experience denial and have difficulty accepting the diagnosis. This all results in a more complicated and confusing path ahead.

In any case, early-onset Alzheimer’s proves challenging for all those involved. Education proves essential in navigating the disease and care options.