For as long as I’ve been practicing medicine, Alzheimer’s disease has been, essentially, a death sentence. You give the diagnosis, and you prepare the patient and the family for the worst.
Until now.
Consider one of my patients at the memory-disorder clinic that I run. She’s 68 years old and not ready to retire. She has been a hairstylist for the past 40 years and revels in the steady flow of compliments she gets from her clients at the salon where she still works three days a week.
She has slowed down a little since I diagnosed her two years ago with early-stage Alzheimer’s disease, but she is determined to maintain as active a lifestyle as possible.
“I want to show my clients a different face of this disease,” she says.
That different face is increasingly the face of Alzheimer’s—the result of a quiet revolution in the way doctors treat the disease, as well as the way patients live with it. Thanks to new developments in the early detection and management of Alzheimer’s, as well as new medications, many patients can slow the course of the disease and boost their well-being. The result is that more Alzheimer’s patients are able to live relatively normal lives for much longer than previously—several years, at least, and often longer.
Lifestyle interventions
Until just a few years ago, the typical work-up for Alzheimer’s disease began when someone walked into my office with noticeable symptoms. The advice: Get your affairs in order, and fairly quickly.
By contrast, many work-ups now begin with patients seeking to improve their lives by either preventing or lessening mild symptoms, prompted by a host of new findings about the cognitive benefits of lifestyle interventions, as well as conditions that can exacerbate decline. I encourage patients to stop smoking, moderate their drinking, eat better, exercise, deal with their depression and keep their brain active, among other things.
I am also on the alert to potentially harmful conditions such as hearing loss in middle age, sleep apnea, negative attitudes toward aging, and chronic exposure to certain medications, environmental pollutants and toxic metals. Addressing any of those conditions can potentially lessen a person’s risk of getting the disease or delay its onset.
My message to patients is that preventing or ameliorating mild symptoms isn’t a race but a marathon over decades, and it requires consistent, longstanding lifestyle changes starting as early as possible in adulthood.
What’s more, thanks to our newfound ability to detect the disease early, we can start that marathon far sooner than in the past.
The hairdresser, for instance, noticed cognitive changes for over a year, but like many people she initially shrugged them off as a normal part of aging (which they often are). In the salon, however, she was having a more difficult time covering up her mistakes when scheduling clients, and realized she needed to get help. If someone in her situation had come to me at the start of my career, there wasn’t much I could do at such an early stage other than speculate on the diagnosis and monitor symptoms as they unfolded.
Now there are tests for several physical indicators of Alzheimer’s, called biomarkers, that can reveal whether there are the telltale toxic proteins of beta-amyloid and tau in the brain. When combined with other information, these results can provide a relatively definitive diagnosis of early-stage Alzheimer’s disease and enable the person to make lifestyle changes, as well as start new treatments or clinical trials right away to attempt to alter its course.
Drug breakthroughs
I recently began working with a 59-year-old attorney with early Alzheimer’s disease who, ironically, I met several years ago not as a patient but as a caregiver for his mother, who I am also treating for Alzheimer’s.
Even as his symptoms have become more noticeable over the past few years, he has remained an active and invaluable partner at his firm. At the same time, he devised a reduced work schedule and began taking more time off to vacation with his wife and two adolescent children.
It is obviously incredibly painful for this robust and involved father and attorney to receive a diagnosis of Alzheimer’s disease. It is painful as a doctor to convey such a diagnosis, knowing that there is no cure.
With the advent of new immunotherapies to remove amyloid plaques from the brain, however, I can now offer a better course to him and many others with early-stage disease. He is hoping that the twice-monthly infusions of the recently approved drug lecanemab (sold under the brand name Leqembi by Eisai and Biogen ) can significantly slow the progression of his cognitive decline; studies indicate that subjects on active medication versus a placebo had up to 27% less decline over the initial 18-month course of treatment. He is also hoping not to experience the potential side effects of brain edema or small bleeds that, while often asymptomatic, have been seen in around one-quarter of subjects and warrant close monitoring.
Along with lecanemab, there are a host of other immunotherapies and novel treatment approaches in clinical trials that show promise in modifying the course of the disease.
As this early detection and new therapies become more refined and widely known, I am seeing more people come to me in their 50s and 60s—much younger than the average patient I saw when I first started our memory clinic over 20 years ago.
The discussion we have about what a diagnosis of Alzheimer’s means in such an early stage is shaped by the fact that many affected individuals are still working, traveling, parenting and even taking care of their own aging parents, and they want to continue engaging in all of these roles and activities as long as possible.
I now tell my patients that by slowing the course of an already slow-moving disease, these new treatments could extend their current quality of life even longer. This hopeful message often prompts a more engaged and happier partnership with the patient and family, since we are shifting from an era of passively watching the disease’s inexorable decline to one in which we are actively altering its course until, we hope, something better comes along.
For these people, I’m a coach and counselor as much as a doctor, encouraging them to maintain an active and normal lifestyle. They need reassurance and practical tips on how to keep engaged on a level that is as meaningful, safe and joyful as possible.
A new language
These advances have even changed the actual words I use when I talk to patients about Alzheimer’s, which in turn further shape our attitudes and approaches. I no longer say that someone with Alzheimer’s disease is “suffering from a disease”; instead, I tell them they are “living with neurocognitive changes.”
I go on to explain how these changes are challenging in many but not all settings, and we can help them to actively engage and elevate their strengths while circumventing and compensating for the bumps.
“I have difficult days,” confessed one patient—a 75-year-old retired orthodontist, describing how short-term memory lapses and loss of words and names can be frustrating and embarrassing. I have encouraged him to take these moments in stride and move on, letting his gregarious personality and well-preserved gift of gab carry the day.
He and his wife have internalized this approach and continue to socialize with friends and spend time on their boat as if nothing has changed. This gives them both a welcome sense of normalcy. Similarly, the hairdresser keeps her mind active by continuing to work, but has engaged a supportive co-worker to jump in when she needs help scheduling a client or adding up the bill. The attorney is still an avid weightlifter but uses a trainer to organize his workouts. He has learned to reduce stress and improve his sleep through relaxation strategies.
In every case, I am spending time in discussions I rarely had in the days before the ability to provide early diagnosis and disease modification. In those days, the typical patient was already quite impaired, often abandoned by friends and surrounded by too many caregivers and clinicians with nihilistic and pessimistic attitudes.
In contrast, the science of what we now call “neurocognitive disorders” is conferring a new era of more effective and optimistic management. In this sense, the medical advances—the early detections, the recognition of the importance of lifestyle changes, the drug interventions—have allowed us to adopt a new approach to Alzheimer’s, and that new approach, in turn, has given patients permission to figure out ways to continue to live fuller lives.
Strategies for success
I would be remiss at this point not to talk about some of the key strategies that my most successful patients employ in their efforts to avoid, or slow down, the progression of Alzheimer’s. Among the most important:
• Prevention is key: Know your risk factors for brain damage as you age, especially from high blood pressure, diabetes, depression, tobacco use, excess alcohol, hearing loss, obesity, a sedentary lifestyle, social isolation, brain injury from falls and other risky activities, and negative attitudes toward aging. Attending to these issues as soon as possible, combined with a brain-healthy lifestyle, can reduce risk and improve wellness.
• Watch your cognitive vital signs: As you age, consider your short-term memory skills, word-finding ability and other brain powers to be cognitive vital signs that need to be measured and monitored, just like blood pressure and other important physical vital signs. While it’s normal to have age-related changes in these skills, they might also reflect problems with stress, sleep, anxiety, depression, medications or medical factors that can be identified and reversed. When they persist and progress, it might be the harbinger of early Alzheimer’s.
• Work with experts: Alzheimer’s disease and other neurocognitive disorders are complex, and diagnosis can be elusive, even with all of the technology and biomarkers at our fingertips. Don’t ignore early signs or wait until symptoms get too bad to ignore. Be proactive and see an expert such as a geriatric psychiatrist or neurologist for a comprehensive evaluation at the first sign of cognitive change.
• Active coping: Keep active and find ways to enjoy life. You don’t need to automatically give up anything unless it’s posing a risk of danger to you or others, which isn’t typically the case in early stages. My patients who thrive continue to travel, socialize with friends and family and engage in the interests they have always enjoyed, but with minor adjustments.
• Stay vigilant to factors that make your conditions worse: Anxiety, depression, pain, active medical issues and social isolation can make life miserable at any stage, but are particularly problematic during early stages of neurocognitive change, since they may reflect or cause changes in brain function that can worsen the course. The good news is that they are treatable. Get regular medical checkups and don’t hesitate to seek counseling with a mental-health specialist who has experience working with neurocognitive disorders.
• Be positive : Yes, it can be hard to be positive when confronted with a diagnosis of Alzheimer’s. But according to scientific studies, having a good attitude and a sense of confidence and purpose can make all the difference in reducing the risk of Alzheimer’s disease and improving wellness after diagnosis. Caregivers can help to bolster attitudes by providing empathy and encouraging a sense of normalcy. Focus on what you can do rather than succumbing to what you can’t .
Ultimately, we all travel down the same pathway of brain aging that brings neurocognitive changes—including both strengths such as wisdom and challenges such as memory decline. For those facing a diagnosis of Alzheimer’s disease or any other neurocognitive disorder, we are well ahead of where we were just a few years ago. And science promises to give us further advances in the years ahead.
But the key thing to remember is this: Merely surviving is no longer the only option. Now, thriving is available to us as well.
Dr. Marc E. Agronin is a geriatric psychiatrist and the chief medical officer of the Frank C. and Lynn Scaduto Mind Institute at Miami Jewish Health. He is the author of several books including “The End of Old Age: Living a Longer and More Purposeful Life.” He can be reached at reports@wsj.com .
