Dr. Neeta Nayak is triple board-certified in internal medicine, geriatrics, hospice and palliative medicine. She is a passionate geriatrician and was raised in a family that prioritized caring for elders at home and experienced firsthand both the challenges and rewards that come along with that journey.
There’s a reason why I’m an enthusiastic geriatrics and palliative medicine trained physician.
One of my first house calls while doing an internal medicine residency was Mr. R, a 70-year-old veteran who had started showing signs of memory loss. He had been an electrician and retired when he was around 60 years old. He was a devoted grandfather and volunteered with his church. His wife, a pediatric nurse, noticed he was a bit forgetful and would occasionally bring home spinach from the grocery store when she’d asked for celery. They and his primary provider attributed his forgetfulness of names and dates to “senior” moments.
Life had gone on for another year or so when Mr. R forgot his wife’s birthday and anniversary (mind you, Mr. R was one of those rare husbands who had never forgotten something so important in the 40 years they’d been married).
Things came to a head when he picked up his grandson from school and lost his way. The family had to call the police and found him and the child two hours north of the school with a flustered Mr. R driving around in circles, unable to find his home.
The progression of the disease impacts more than just the patient
Memory testing revealed a progressive loss of short-term memory, and he was diagnosed with probable Alzheimer’s disease. His wife took it the hardest. She quit her job in pediatric nursing to become his 24/7 geriatric nurse at home.
By the time I did a home visit, he had become home bound and helplessly reliant on caregivers to assist him with daily activities such as bathing and dressing. He could barely remember his wife’s name which added to her grief. Over a few months, he became incontinent, and wheelchair bound.
He could barely recognize food and would become highly agitated when his wife tried to hand feed him. They opted not to place a feeding tube and about a year later, he passed away gently on hospice. I distinctly remember his wife’s tearful words to this day.
“We had planned on renting an RV and driving all across America when he turned 70 and spending time together. All our dreams were crushed,” she had shared. “Alzheimer’s disease robbed me of my husband many years before he passed. He never knew who I was, his children or grandkids for the last few years. His brain was gone long before his body followed.”
She asked questions that many facing this diagnosis struggle with every day. “Why did it take so long for us to find out he had Alzheimer’s? Why can’t the doctors do more for people like him? Why wasn’t anyone able to help me do more for him?”
Finding solutions with little to no answers
I still feel her pain more than two decades later. My encounter with this couple and seeing my own grandmother who began demonstrating memory loss, made me feel so helpless in my ability to care for patients with neurodegenerative diseases and provide solace to their caregivers.
Alzheimer’s disease is vastly underdiagnosed in its early stages. The eyes do not see what the mind does not know. I felt my own helplessness very keenly. It made me give up a fellowship in gastroenterology at the Mayo Clinic and switch to a fellowship in geriatric medicine at the University of Chicago. And I have no regrets.
Alzheimer's disease is a neurodegenerative disease that usually starts insidiously and worsens over time. It is the cause of 60 to 70% of cases of dementia. While the most common early symptom is difficulty remembering short-term events, the disease can progress to include problems with language, disorientation, mood swings, loss of motivation to even care for oneself resulting in self-neglect and behavioral issues, withdrawal from loved ones, losing bowel and bladder functions and ultimately death.
Most diseases affect the diseased person, run their course and either end up as curable, fatal or chronic. But there is a familiar adage when it comes to Alzheimer’s, “This is a disease that takes two.”
Alzheimer’s disease is notorious for being chronic, progressive and relentless in its course and takes with it not only the person afflicted but also the caregiver. I have seen caregivers suffer intensely from the burden of daily caregiving; it takes a toll on their own emotional and physical health.
Alzheimer’s disease and dementias are some of the most perplexing diseases among the myriads of diseases we studied in medical school and beyond. How can a person with no physical ailments, not even hypertension, end up with dementia? Why does it affect someone in their 60s with no family history or known risk factors, while someone with a century-old brain, can still be sharp as a tack?
After decades of intense research, why is this a disease that still defies a cure?
We studied plaques (clumps of a protein called beta-amyloid that appear in the spaces between neurons) and tangles (protein called tau that appears inside a neuron) in medical school and how they accumulate in the brain of those with Alzheimer's. But the jury is still out on their role in killing brain cells.
I cannot conclude this blog without a few words on Dr. Alois Alzheimer. He was a German psychiatrist who is credited with identifying the first published case of "presenile dementia,” which his colleague Dr. Emil Kraepelin would later name as Alzheimer's disease.
In 1901, Dr. Alzheimer observed a 51-year-old woman named Auguste Deter who had puzzling behavioral symptoms and short-term memory loss. In 1906, upon her demise, he studied her brain and identified amyloid plaques and neurofibrillary tangles. He was a very dedicated neuropathologist and spent much time studying this disease until his own premature death from rheumatic disease-related complications at age 51.
Facing an Alzheimer’s diagnosis today
As of 2020, there were about 50 million people and counting in the world with Alzheimer's disease. It seems to affect about 3% of people older than 65 and almost 32% of those over 85, women more often than men and is ranked in the top ten leading causes of death in the United States.
Treatment for this disease as of today is palliative. Actions such as eating a healthy diet, exercising regularly, staying engaged socially and avoiding smoking and excess alcohol may help reduce the risk of cognitive decline.
I often wonder what we could do differently for Mr. R had it been now instead of 25 years ago. There were hardly any dedicated memory care units in his town that could’ve helped his wife. We do now! There were no medications easily available in the early to moderate stages of his diagnosis to temporize the disease. We do now! There wasn’t much knowledge in the local health care community of resources and support groups available to his wife through the Alzheimer’s association. We do now!
It’s very apparent that Alzheimer’s is a perplexing disease and caring for the patient and caregiver takes a compassionate village. While this couple didn’t have the opportunity to benefit from this village, it’s available now and there’s hope for those that follow!