Diagnosed with Alzheimer’s? Ask your provider these 8 questions

The prospect of developing Alzheimer’s disease can cause people great anxiety—and especially so as they approach age 65, when risk starts to increase. In 2023, as many as 6.7 million Americans were living with Alzheimer’s disease, and nearly two-thirds of them are women.

While the brain disorder is not considered a normal part of aging, those numbers will increase as the population ages. In fact, the Centers for Disease Control and Prevention (CDC) projects that as many as 14 million people in the United States will have Alzheimer’s by the year 2060.

If you’re diagnosed with Alzheimer’s disease—the most common type of dementia—you’ll likely experience a wide range of emotions, from sadness to anger to fear about what the future may hold. But one reaction that is quite common is relief, says Phaedra Dowell, MD, a neurologist in Overland Park, Kansas. That’s because, finally, it becomes clear why you have trouble with things like following a recipe or finding your way home after driving to the store.

In spite of the challenges, there are proactive steps you can take to help slow the progression of the disease. And by being informed, you’ll know what changes lie ahead so that you can plan for your future. Here are eight important questions to ask about what to expect after an Alzheimer’s diagnosis.

“Stages of Alzheimer’s refer to how severe your disease is,” says Dr. Dowell. “It goes from mild, to moderate, to severe.” There are several quick, in-office tests that a healthcare provider (HCP) can use to help look for the kind of cognitive impairment that suggests Alzheimer’s.

• The General Practitioner Assessment of Cognition (GPCOG) is designed to be used by a variety of HCPs, including general practitioners, primary care providers, and family doctors. If a patient scores less than 8 on part 1 of the test, they are advised to take part 2 to get more information.

• The Mini-Cog includes a test for memory and an exercise in which a patient must draw a picture of a clock. It can be used by an HCP to determine if follow-up testing is needed.

“More thorough testing, such as a neuropsychological test, can provide more complete information,” says Dowell. This kind of assessment, done with a special HCP called a neuropsychologist, can take several hours since they are evaluating all aspects of cognition.

Researchers believe that biological changes in the brain that lead to Alzheimer’s disease may begin years, if not decades, before symptoms such as confusion and memory loss first appear. Once they do, Dowell says that the pace of progression is highly individual. “Sometimes people will go for several years in the mild category and then they'll go another several years in the moderate,” she says. Regardless of the pace, brain function continues to deteriorate.

Life expectancy after diagnosis can vary between 3 to 10 years, on average, but much depends on the age of diagnosis. Patients who start to experience cognitive troubles in their sixties and seventies could expect a median life span of 7 to 10 years, while those diagnosed in their nineties could live for approximately 3 more years.

The loss of neurons (nerve cells in the brain) and brain functioning that comes with Alzheimer’s is irreversible. Although there is not yet a cure, researchers around the world are working to help treat Alzheimer’s disease before mental decline starts. The good news, Dowell says, is that there are medications that can slow its progression. “None of the medications will improve your memory to the level it was before you had the disease,” she says. “The slope will continue to trend downward, but it will be at a slower rate.” Drugs approved by the U.S. Food and Drug Administration (FDA) generally fall into two categories: drugs that change the progression of the disease and those that help ease symptoms of Alzheimer's.

Drugs that change disease progression

• Lecanemab works by removing from the brain a protein called beta-amyloid. When beta-amyloid clusters together, it forms plaques that contribute to the development of Alzheimer’s. The goal of taking lecanemab is to reduce mental decline in people living with early Alzheimer's.

Drugs that relieve symptoms

• Cholinesterase inhibitors are prescribed to treat symptoms related to memory, thinking, language, and judgment. They include donepezil, rivastigmine, and galantamine.
• Glutamate regulators (such as memantine) help improve memory, attention, language, and the ability to perform tasks.
• A cholinesterase inhibitor (donepezil) may also be combined with a glutamate regulator (memantine).

Other drugs may be prescribed to help ease non-cognitive symptoms that come with Alzheimer’s such as insomnia (trouble sleeping) or agitation.

“People with Alzheimer's are prone to developing depression or anxiety,” says Dowell. “Part of that is because of the actual changes that are going on in the brain and part is from a coping standpoint.”

Since depression can itself cause memory problems, those problems will worsen if you also have Alzheimer’s. “Oftentimes, if you address the depression, through counseling or medication, memory can improve,” Dowell says. People who are depressed also tend to have trouble with sleep, which interferes with learning and the formation of memories, according to the National Sleep Foundation. Addressing depression can also help alleviate sleep-related issues that impact cognitive function.

“What's good for your overall health seems to be good for your brain as well,” says Dowell. “When we start thinking about what diets might be beneficial for people, it's usually heart-healthy diets.”

Numerous studies have suggested that following the Mediterranean diet may slow cognitive decline. In fact, researchers with the University of Michigan’s Health and Retirement Study found that among nearly 6,000 participants, those who followed the Mediterranean diet or the related MIND diet most closely had a 30 to 35 percent lower risk of cognitive impairment. The results were published in 2017 in the Journal of the American Geriatrics Society. “These diets may be beneficial both from a prevention standpoint and for helping people once they develop Alzheimer’s,” says Dowell.

There is one simple habit that may help you live better with the disease: exercise. “There has been research that has shown that exercise does slow cognitive decline,” says Dowell.

In one Danish study, published in 2016 in the Journal of Alzheimer’s Disease, 200 people with Alzheimer’s disease between the ages of 50 and 90 were randomly assigned to either participate in supervised aerobic exercise sessions lasting 16 weeks or to receive usual care. The researchers found that the exercisers not only had fewer psychiatric symptoms, such as depression and irritability, but saw significant improvements in mental speed and attention when compared to the non-exercisers.

Other research has found similar results. One 2022 review and analysis of studies published in the International Journal of Environmental Research and Public Health suggested that doing aerobic exercise in sessions of 30 minutes, three times per week, contributed to better cognitive function in Alzheimer’s patients.

“We don't fully understand if it's a certain amount of exercise, or the type of exercise, but just getting moving is important,” says Dowell. The CDC recommends 150 minutes of moderate-intensity aerobic exercise (for example, brisk walking) per week.

As your condition progresses you will need more help with daily activities, such as cooking, housekeeping, and paying bills. Dowell says it’s important to start early discussions about:

• Goals of care
• Where you’ll live
• Who will be available to help, whether it’s family, friends, or a caregiver
• Any specific medical requests

“Some people feel that they absolutely want to stay in their home and not go to a nursing home,” says Dowell. “In any case, they need to start making arrangements early, not later.”

“Giving up driving is probably one of the most challenging things patients cope with,” Dowell says. “They may struggle with depression after losing their ability to drive.”

The fact is, there comes a point when driving becomes a hazard not only to yourself but to others on the road. For example, you may become confused and step on the gas pedal at a red light or lose your way home.

Dowell says if those who are familiar with your driving believe it’s time for you to give up your keys, it’s wise to listen to them. If you’re still unsure, enlist the help of a third party, such as your HCP or a trusted friend, or look into getting an assessment from an occupational therapy driving rehabilitation specialist, who can evaluate your driving skills.

One resource for those with Alzheimer’s disease, their families, and caregivers is the Eldercare Locator from the U.S. Department of Health and Human Services’s Administration for Community Living. This site can help you find transportation, in-home services, housing options, and other assistance.