Editor’s note: Over the past two months, reporters from CNHI newspapers nationally have been exploring the many painful aspects of dementia, its impacts, costs and possible treatments, in a special report that concludes today.
AUSTIN — Among the growing number of Americans diagnosed with Alzheimer’s disease, there is a small but significant percentage who are stricken with the disease at an early age.
Early onset dementia is defined as individuals who are younger than 65 and show cognitive impairment. Those with early onset dementia account for 5% to 6% of all Alzheimer’s dementia cases, according to the National Institutes of Health.
“Most of the thinking right now is that the cause is because of multiple genes interacting,” said Dr. Steve Steffensen, a neurologist and associate professor at Dell Medical School in Austin.
Steffensen said at least 30 different genetic locations have been identified that contribute to Alzheimer’s dementia, and it is believed that the interaction between their different locations leads to premature arrival of the disease.
He said there are not many differences between early onset Alzheimer’s disease and traditional Alzheimer’s except for the age that it is diagnosed in the patient and the initial symptoms.
Patients with early onset Alzheimer’s tend not to have as many memory problems initially, but instead have more difficulty with completing multi-step tasks, misplacing items and poor judgment.
“Anything that involves sequencing, organization, planning, abstraction, those are going to be the things that tend to be involved in executive function, and those are preferentially affected in early onset Alzheimer’s disease,” Steffensen said.
In addition, early onset Alzheimer’s is not likely to impact any one segment differently than those who develop the disease later in life, he said.
Women are nearly double the lifetime risk of developing Alzheimer’s disease compared to men, and Black and Hispanic American populations also see higher incidences, according to the Alzheimer’s Association.
But Steffensen said there remains little research on who is more likely to develop early onset dementia due to the small population size.
Monica Moreno, senior director of care and support at the Alzheimer’s Association, said that although a diagnosis of Alzheimer’s is always difficult, it can be even harder on a younger person because these are individuals who are likely still working and raising a family.
They may even be the family’s primary breadwinner, or the gateway to which their family members can receive health insurance.
“There’s a whole other layer of financial complexities for individuals living with early onset (Alzheimer’s) and their families,” Moreno said.
A few key differences
Dr. Lee Jennings, a geriatrician in Oklahoma City, said there are a few key differences between early onset Alzheimer’s and normal aging issues. For example, if an individual finds themselves repeating themselves often or has short-term memory issues, it could be early onset Alzheimer’s disease, Jennings said.
Steffensen added that although a temporary lapse in memory is a normal part of aging, it should come back quickly — such as forgetting where you placed your keys and then remembering a few moments later.
Where it becomes concerning is when a patient, for example, is frequently unable to come up with a word or name in conversation, and it becomes evident to those close to them.
“That’s not a normal part of aging. Don’t ignore that,” Jennings said. “Go and see your doctor.”
Available treatments
Steffensen said treatments for early onset Alzheimer’s disease are the same as those for patients who are diagnosed after age 65, and many of those medications have not changed in nearly two decades.
Current treatments available for Alzheimer’s disease have been around since 2003. These drugs primarily target the symptoms that come with the disease.
However, there have been some treatment breakthroughs in the past year that target individuals with early onset dementia.
In July, the Food and Drug Administration fully approved the drug Leqembi. Experts say the drug doesn’t stop dementia but slows its progression.
Leqembi specifically targets a protein in the brain that doctors have long believed is the cause of Alzheimer’s disease. It is currently for individuals with mild cognitive impairment or early-stage disease, which experts said could allow them to maintain their independence longer.
Steffensen added that he would recommend any individual see a medical professional if they are experiencing issues completing complex tasks or performing their usual activities.
“There are medications that are becoming available that are most effective in early stages, and having some baseline cognitive screening can be very helpful as you get older,” he said.