What doctors wish patients knew about Alzheimer's disease

Alzheimer’s disease is a progressive neurological disorder that affects millions worldwide, robbing individuals of their memories, independence and ultimately, their lives. In the U.S., because of the increasing number of people 65 or older—particularly older adults who are 85 or older—new cases of Alzheimer’s disease and other dementias are projected to double by 2050, according to the Alzheimer’s Association.  

This surge poses profound challenges for families, health care systems and researchers. Despite ongoing efforts, the exact cause of Alzheimer’s remains elusive, but promising advancements in diagnosis, treatment and prevention offer renewed hope for slowing its devastating impact.  

Nearly 7 million adults 65 or older in the U.S. are living with Alzheimer’s disease, with about 60% of those patients being women. Women are also more likely to have other dementias, according to the Alzheimer’s Association. Meanwhile, older adults who are Black are about twice as likely to have Alzheimer’s or other dementias as older white adults. For older adults who are Hispanic, they are 1.5 times as likely to have Alzheimer’s disease or other dementias as older white adults.

The AMA’s What Doctors Wish Patients Knew™ series gives physicians a platform to share what they want patients to understand about today’s health care headlines.  

Anjali N. Patel, DO, a cognitive neurologist at the Atlantic Neuroscience Institute at Overlook Medical Center, took time to discuss what to know about Alzheimer’s disease.  

Atlantic Health System is a member of the AMA Health System Program, which provides enterprise solutions to equip leadership, physicians and care teams with resources to help drive the future of medicine.  

“With the general public, there’s a bit of confusion as to what is dementia and what is Alzheimer’s disease,” said Dr. Patel. “Alzheimer’s disease is the most common form of dementia among someone who is 65 or older.” 

“Alzheimer’s disease typically starts with short-term memory changes, but there can be other symptoms that someone presents with as well,” she said. “Over time, symptoms do change where other cognitive functions are affected, such as speech, language and difficulty driving. 

“For example, if someone has been driving to their local grocery store for 20 years and all of a sudden, they’ve gotten lost because there was a detour,” Dr. Patel said. Another example is “difficulty paying bills.” 

“What's important to realize is that dementia is a broad general term. It's an umbrella term like saying I own a car. There are many different types of cars, there are different brands,” Dr. Patel said. Dementia is the same way. There are different forms of dementia disorders. So, Alzheimer's disease is a type of dementia, but it's not the only form of dementia.  

“There's also frontotemporal dementia, Parkinson's disease with dementia, vascular disease dementia, Huntington's disease dementia, Lewy body disease dementia and primary progressive aphasia,” she added. 

More than 55 million people worldwide live with dementia, with Alzheimer’s accounting for an about 60–70% of cases, according to the Alzheimer’s Association. 

“There are different stages for Alzheimer's disease. Usually the symptoms are very subtle, where it may initially be chalked up to a little bit of forgetfulness. It's not a big deal,” Dr. Patel said. “But then symptoms become more prominent, and it becomes more noticeable.”  

“When someone has difficulty in doing their daily routine tasks, that's when people start noticing a real change and typically when they go to the doctor to get evaluated,” she said, noting that “progression can vary from person to person. It's not possible to predict any one particular person's rate of change, but someone can change over the course of five, seven years.  

“Some people live to 10 years or more with Alzheimer’s disease. But during that course, people will progress where they have more difficulty in doing things by themselves and need more assistance and supervision for safety concerns,” Dr. Patel added.  

“There are certain genes that we know about that can predispose somebody to developing Alzheimer’s disease, especially if there is a strong family history,” Dr. Patel said. “We know about three genes that can cause early onset Alzheimer's disease, and that's when someone can develop symptoms in their 40s and there are multiple family members who are affected with the disease.   

“The gene that we more commonly hear about, especially now in the news, is the apolipoprotein E, or APOE, gene and there are different versions of this gene,” she explained. “We get one copy from mom, we get one copy from dad, and there are different alleles. There's APOE 2, 3 and 4.  

“If we have one or two copies of the APOE 4 allele, we are at a higher risk of developing Alzheimer's disease than the general population. But it's still not a guarantee,” Dr. Patel added. “There are some people with the APOE 4 allele that don't develop Alzheimer's disease, but it does put someone at a higher risk.” 

“With Alzheimer's disease, there are abnormal protein deposits that we typically talk about—the amyloid plaques and the tau tangles,” Dr. Patel said. “The plaques and tau tangles are abnormal brain deposits that start to interfere with nerve cell communication and how the nerve cells function.”  

“These changes are occurring in our brain decades before we actually have, outwardly, signs or symptoms of the disease,” she added. “The typical age of onset is 65 years for Alzheimer's disease. The changes in the person's brain are happening one or two decades before that.  

“So over time, the nerve cells are breaking down, they're not functioning well,” Dr. Patel added. “This leads to volume loss of the brain tissue, and once it reaches this critical point, that's when someone starts having the signs and symptoms of the cognitive changes.” 

What doctors wish patients knew

Subscribe for the answers to the latest questions patients are bringing to the exam room.

Subscribe Now

“It's even more important now ever than before to discuss the symptoms early and to get an early diagnosis,” Dr. Patel said, “especially with the new research that's been done and the new” Food and Drug Administration (FDA)-approved “medications for mild cognitive impairment due to Alzheimer's disease. 

“Someone can gain access to these newer medications, learn more about how their disease can potentially change and progress and get more information about supportive services, not only for themselves, but for their family members and others who are taking care of them,” she added.  

This is important because “if someone who notices their changes early on and gets evaluated, if they're provided a diagnosis of mild cognitive impairment  due to early stages of Alzheimer's disease, there are newer anti-amyloid medications that have been FDA-approved last year and this year that are considered to be disease modifying, making a significant impact in the disease course,” Dr. Patel explained.  

“Alzheimer's disease can be diagnosed by a history, exam and by doing cognitive testing in the office,” Dr. Patel said. “Typically, initial evaluations should include a review of systems medications to make sure there are no contributing side effects of medications causing the cognitive changes.” 

Physicians will also “want to do blood work to make sure we're not missing any signs of an underlying infection,” she added, nothing diagnosis also includes “evaluating for reversible causes such as electrolyte abnormality, thyroid dysfunction or B12 deficiency.”  

“We usually recommend doing an imaging study of the brain, such as an MRI [magnetic resonance imaging] or a CT [computed tomography] scan. We're looking to see if there are any signs of volume loss, vascular changes, such as if there was a stroke, if there is any bleeding in the brain or if there is a mass or a tumor,” Dr. Patel said. “These are the things that an MRI or CT scans can tell us. Beyond this, there are more specialized tests that are available. For example, someone can do more in depth memory testing with a neuropsychologist.” 

Additionally, “there are different types of imaging studies. An amyloid PET [positron emission tomography] scan is now available where you can see if there's evidence of amyloid plaques,” she said. “A lumbar puncture, a procedure also called spinal tap, can evaluate for any signs of infection, inflammation and also biomarkers related to Alzheimer's disease.  

“And now there's also blood-based biomarkers that are being developed. So instead of doing a PET scan or a lumbar puncture, someone can have a blood test done to see if they would be at higher risk or if there are signs of Alzheimer's disease,” Dr. Patel added.  

For Alzheimer’s treatments, “there are two classes of medications that are oral medications—the cholinesterase inhibitors and an N-methyl-D-aspartate, or NMDA, receptor antagonist,” said Dr. Patel. “These medications have been around for quite some time.”  

“The newer anti-amyloid medications are IV infusions, and these medications are designed to target the amyloid plaques in the brain and remove them,” she said. “And these medications, in particular, are considered to be disease modifying because they can significantly slow the cognitive and functional decline. 

“But unfortunately, there’s still no cure or reversal of symptoms with any of these medications,” she added.  

Some other risk factors of Alzheimer’s disease are “having high blood pressure, high cholesterol and diabetes, which can cause vascular changes in the brain. That can also impact memory or thinking,” Dr. Patel said. “So, we do recommend a heart healthy or mediterranean diet.” 

“Aerobic exercise is also good for the heart and good for memory and thinking as well,” she said. “We recommend daily exercise, but you also want to do other types of exercise as well. For example, muscle strength training by lifting light weights, stretching exercises and exercises to help strengthen the core muscles, which can help maintain balance and prevent falls.” 

“Sleep is also very important for memory—at least seven to eight hours of good quality sleep,” Dr. Patel said. “Hearing and vision are also important. If you find that there's some hearing loss, getting a hearing evaluation, getting those hearing aids is important.” 

To reduce your risk for Alzheimer’s and related dementias, it is also important to avoid smoking and limit consumption of alcohol.  

“It is very hard for family members and caregivers because they may be more aware of the cognitive changes that are going on rather than the person themselves,” Dr. Patel said. That is why she recommends that caregivers do their best to show patience.  

“Just make sure that you’re doing the best to provide a safe and healthy environment for the person with Alzheimer’s disease or dementia,” she said. It’s about “trying to keep them cognitively stimulated and active as much as possible.” 

Such a setting is especially important “as the disease progresses,” Dr. Patel said. “Sometimes having some background music can be helpful, but not as many loud noises. Keep a low volume and more calm communication rather than raising the voice because that may seem more threatening.”  

“When someone has cognitive changes and they’re well aware of the changes, that can definitely impact them psychologically and it can increase their own stress levels, but also cause anxiety and depression,” she said. That is why “it’s always important to ask about these symptoms to evaluate and treatment them as well.” 

For prevention and after diagnosis, “studies have shown that learning something new, especially in a group setting, is very beneficial,” Dr. Patel said, adding “there's even newer studies showing that being bilingual or learning languages at any age can be beneficial.” 

“If you enjoy reading, join a book club, talk about what you’re reading and discuss it further. These are activities that are important to do for anybody, regardless of if they have memory loss or not,” she said. This also can be “learning how to play a musical instrument, creative art projects, crossword puzzles, Sudoku or taking other classes.” 

“To maintain cognitive health, you want to stimulate your mind just like you want to stimulate your body,” Dr. Patel said.  

“I wish that people would openly discuss their concerns, not only with their primary care doctor, but with their family or their loved ones, to really start the process of getting evaluated to find out if this is normal aging or if there is something else going on,” Dr. Patel said. “Start with your primary care doctor about how you’re feeling, what you’re worried about, so they can start that evaluation process, which includes reviewing the symptoms, looking for any reversible causes such as medication side effects, thyroid dysfunction or vitamin deficiency.” 

“If more neurological testing is necessary, then your primary care physician can direct you down that path,” she said, emphasizing that “knowledge is power. The more you learn and know about what is happening to your health and your own body, the better you can make decisions for yourself and the more information it provides your family.”