Physicians with Alzheimer's: What Happens When a Doctor Forgets?
APRIL 17, 2018
Cecilia Pessoa Gingerich
Over the years, Gayatri Devi, MD, MS has seen hundreds of patients with cognitive loss at her clinic in Manhattan’s Upper East Side. Some have only the mildest symptoms of cognitive impairment, while others suffer from severe forms of dementia. Despite their unique presentations, nearly every patient has one thing in common—they’re worried about what will happen to them next.
Once, a patient reached out to Devi because he was having trouble remembering things and was beginning to notice that it was affecting his work. Over the course of a few visits, Devi performed cognitive evaluations and examined the patient’s MRI scan. In the end, the diagnosis was Alzheimer’s disease. Fortunately for the patient, it was in early stages and the effects were still mild. But even mild symptoms could be severely problematic for this patient, and have wide-reaching implications for those he worked with—he was a surgeon.
The patient ran a practice and supervised residents at a nearby facility. Memory lapses could increase the risk for medical errors, risking his patients’ wellbeing and trainees’ career advancement. Should he decide to retire early and close his practice? What about his teaching—would that be too risky to continue as well? Was he fit to make these decisions for himself?
The Scope of the ProblemAs doctors continue to work later in life, the risk for developing neurodegenerative diseases like Alzheimer’s while still in the workforce continue to rise. Healthcare systems face a challenge in determining guidelines and weighing physicians’ abilities against patients’ wellbeing. Devi, the Director of Park Avenue Neurology, sees about 6-10 cases of physicians with signs of cognitive impairment per year. Some are referred to her clinic by their hospital or a state organization, but many, like the surgeon, come to her self-referred.
“We don’t really know how many physicians have Alzheimer’s disease,” Devi said. However, she noted that given the prevalence of Alzheimer’s disease (AD) and other forms of cognitive impairment in the general population, it is possible to estimate the numbers of physicians affected.
The Einstein Aging Study found that the prevalence of dementia in people aged 70 and older is 6.5% and AD dementia, specifically, has a prevalence of 4.9%. Extrapolating from that data, about 4600 of the nearly 95,000 physicians 70 and older have AD and over 6000 have some form of dementia. Additionally, about 11,000 have amnestic mild cognitive impairment (MCI), a forerunner of Alzheimer’s disease, and an estimated 9400 have nonamnestic MCI, a forerunner of other dementias characterized by cognitive deficits in areas other than memory.
“They’re all scared,” Devi told MD Magazine about patients who come in with memory issues. “It comes as a surprise to them that they could have this condition and still be functional.” Surprising though it may be, Devi said that many people with dementia, even AD, are still capable of working. “Depending on the support systems in place,” she said, “I’ve found doctors with Alzheimer’s as competent or more competent than their peers.”
Variability in the BrainHuman brains are, of course, highly complex and individualized organs. “We treat [brains] like kidneys, which are very similar,” Devi said. “But there’s tremendous variability in the brain.” Each person has a unique set of reserves, according to a review of research published by Yaakov Stern, PhD. These assets include both physical brain reserve (the size of the brain measured by neurons and synapses) and cognitive reserve (a measurement of the brain’s networking strength).
Cognitive reserve (CR) imparts resilience, according to Stern, in that 2 patients with the same brain size and same amount of brain damage can display different clinical symptoms. A patient with stronger cognitive reserves might not even reach the threshold at which clinical symptoms appear.
Researchers have identfied several factors that contribute to cognitive reserve, including education, occupational attainment, and leisure activities. Studies Stern referenced have found that patients with fewer than 8 years of education face a risk of developing dementia that is 2.2 times higher than those with more education. Additionally, those with low occupational attainment—study participants in unskilled jobs or with clerical positions—had a 2.25 times greater likelihood of developing dementia than participants in management positions or professional roles. “The implication of these findings was that educational and occupational experiences imparted a reserve against the expression of Alzheimer's pathology,” Stern wrote.
Another study considered the cognitive impact of 13 leisure activities including walking, reading, socializing, volunteering, or playing cards. Researchers split participants into groups of those who had participated in fewer than or equal to 6 leisure activities during the previous month and those who had participated in over 6 activities that month. Those who engaged in more leisure activities were 38% less likely to develop dementia.
“The concept of CR suggests that the brain actively attempts to cope with brain damage by using pre-existing cognitive processing approaches or by enlisting compensatory approaches,” Stern said. Thus, patients with higher CR are better equipped to handle brain damage, whether from Alzheimer’s disease or other sources, such as traumatic brain injury.
Fear, Stigma, and MisunderstandingUnfortunately, misinformation and stigma surrounding dementia are widespread. Clichés of people with Alzheimer’s disease—usually of people with advanced forms of the disease and debilitating symptoms—promote fear, even among physicians.
Danielle Ofri, MD, PhD, internist at Bellevue Hospital, and author of “What Patients Say, What Doctors Hear,” echoed this sentiment: “We doctors fear neurodegenerative disease more than anything else.”
For doctors who have spent so many years studying medicine, honing their minds, and healing others, facing a condition like Alzheimer’s can be devastating. Given the aging of the US population, more and more doctors are interacting with patients with MCI or dementia. “We see those patients in the hospital, we know what it looks like and what happens to them,” Ofri told MD Magazine.
A study of the general population showed that most adults do not understand the spectrum of AD. When they picture it, they think primarily of severe and advanced forms of the disease. Participants in the study reported believing that a person with Alzheimer’s disease would not remember most recent events (73.8%), would face employment discrimination (55.3%), and would be excluded from medical decision-making (55.3%).
When even physicians fear and misunderstand the disease, neurologists like Devi find themselves repeatedly explaining that AD and dementia exist on a wide spectrum. “It’s not good science to pigeon hole everyone,” she said, referring to the stereotypical understanding of an Alzheimer’s patient with severely reduced cognitive abilities and memory. Instead, Devi takes into consideration not only each patient’s disease type and progression, but also their specialty and organizational roles. She noted that patients in administrative, academic, or technical roles all face different cognitive demands, and some can therefore continue to work while living with cognitive impairment.
Helping Physicians Helps PatientsDevi recalled another patient with Alzheimer’s, who had previously been told to retire immediately upon her diagnosis at an Alzheimer’s research center. This doctor ran a highly specialized practice and sudden retirement would have left her patients scrambling for a new specialist.
The specialist sought a second opinion through the Committee for Physician Health (CPH) of New York State which assists physicians, physicians’ assistants, and medical students affected by addiction, mental health problems, substance abuse, and cognitive disorders. The CPH program reports receiving 2000 referrals since 1986. Of those referrals, 75% come from colleagues of physicians or physicians themselves.
Whether referred to the program or self-referred, physicians like the specialist who sought help from Devi first undergo a clinical evaluation. If a diagnosis is warranted, the patient is directed to treatment. Following referral to Devi, the specialist returned to her practice, working with some restrictions recommended by CPH for 4 more years, until her planned retirement. “Allowing her to work and find physicians for each of her patients, not only helped her, but helped her patients [find placement with other specialists],” Devi said. “Some of these draconian recommendations are based on erroneous ideas of what Alzheimer’s means and do not only the physician, but also the community a disservice,” said Devi.
The Association of American Medical Colleges estimates that by 2030, the United States will face a shortage of 42,600 to 121,300 physicians due to increasing demands and physician retirement. Given the looming shortage of physicians, nurses, and other health care professionals, the medical field cannot afford to lose or ostracize clinicians who are still capable of providing care to their patients.
When working with a patient, Devi first determines whether they have dementia or just MCI. Physicians with mild cognitive impairment are more likely to be able to continue working. But it’s not always her executive decision. She emphasized that choosing which course to follow is a joint effort with each patient. “If it’s dangerous [to keep practicing], I’ll say ‘no you can’t do that,’” she said, but adds that she has never had a patient refuse to agree with her recommendations for protecting their patients. Generally, the physician-patients Devi treats are deeply concerned about the safety of their patients.
With each of her cases, Devi must determine whether the physician she is treating can continue to function well in their position. She imagines herself in the place of a patient considering that doctor. “Would I be comfortable having this person as my physician or internist?” Devi asks herself. “It’s surprising how often this answer is yes.”
A Judgement CallThe answer to that question isn’t always a “yes,” but it’s not always an unequivocal “no” either. Devi’s patient, the surgeon, ended up deciding to close his private practice, but continuing to work with residents for a few more years. “It was more hands off, a team-based approach,” she said of his teaching work. “We decided that he was no longer able to continue in his practice, but he continued to teach and supervise.” He returned to her clinic for 3 years after his diagnosis with Alzheimer’s disease for ongoing monitoring.
Though some are, other situations aren’t as clear cut. In the surgeon’s case, Devi isn’t sure whether the measures they took were entirely necessary given how mild his symptoms were. “Perhaps it was an overreaction to have him give up his practice,” she said.
Like the physicians she treats, Devi keeps the patients’ best interests in mind. At times a doctor must stop practicing in order to protect patients. At other times, patients benefit from a doctor continuing to provide care, despite early symptoms of cognitive impairment or Alzheimer’s disease.