Getting diagnosed with Alzheimer’s is not the start of the Alzheimer’s journey, but it is a pivotal waypoint. Nina’s diagnosis came at least five years after we started recognizing symptoms. I start the clock when my uncle (Buck’s brother, who found the humor in everything) first mentioned his very serious concern about her memory and her ability to care for herself. The actual diagnosis, when it came, was shocking and sad and scary and all the things one would imagine; but it was not really a surprise.
Much later I learned that our situation was typical. Even though nearly seven million Americans are living with Alzheimer’s and it’s called a public health crisis, it has been historically difficult to get a diagnosis—even when you suspect it or even push for it. According to the Alzheimer’s Association, only half of those living with Alzheimer’s disease are diagnosed, and of those, only half are told of their diagnosis—this even though other surveys indicate the vast majority of people would want to know their diagnosis, however dire.
WHAT GIVES?
This disconnect is due to a combination of factors. People are often unwilling or embarrassed to share concerns with their primary care doctors. It’s hard to push for an Alzheimer’s diagnosis because really, who wants to hear that news? And even for patients who do, the practitioners they’re seeing are not always trained to recognize early signs of dementia. Plus, it’s a major buzz-kill to share the diagnosis of a disease that until recently had no definitive test or treatment. It’s even worse with early onset Alzheimer’s (before age 65). The Internet is full of stories of people with early onset Alzheimer’s who badgered their doctors with concerns but remained undiagnosed or misdiagnosed— told they have ADD, or depression or mood disorders.
ALZHEIMER’S VS DEMENTIA
Confusion surrounding the terminology doesn’t help. What is the difference between MCI (mild cognitive impairment), dementia and Alzheimer’s and when does one cross the line between them? In a nutshell, dementia is an umbrella term for a collection of symptoms— ranging from disorientation, disorganization, language impairment, mood change, personality change and memory loss—that can come from a variety of diseases.
For the visually inclined, the AARP website explains that if dementia and Alzheimer’s were nesting dolls, Alzheimer’s would fit inside dementia, but not the other way around. Furthermore, the Alzheimer’s doll would take up 60-80 percent of the space inside the dementia doll. Of the remaining 20-40 percent of dementias, 5-15 percent are potentially reversible. The rest of the doll fills up with, in order, Vascular, Lewy body, Frontotemporal, and other or mixed dementias.
Because the symptoms from other diseases can overlap it can be hard to exactly diagnose the type of dementia; but when it comes to stigma I quickly learned there is one clear leader: Alzheimer’s. My few friends who did have parents with any form of dementia were adamant that it was not Alzheimer’s.
OUR PATH TO DIAGNOSIS
What started as a few odd behaviors from Nina became a sea of red flags: the consummate wordsmith could not find the right words for common things; packed summer capris for a trip to NH in January; quit going to her book club; scribbled notes on paper scraps everywhere; tried to send a letter in a Netflix envelope (remember those?); got stranded at the bottom of the elevator with no clue how to return to a hotel room.
My sisters accompanied Nina on many trips to her PCP, where their collective concerns were brushed off. The doctor—herself a young mother at the time— summed up the list of concerns with a dismissive, “Oh I always forget where I put my keys too,” or something similarly breezy.
At the suggestion of a close friend, Nina saw a behavioral analyst who took an integrative medical approach to memory issues. This supposed expert in comprehensive Alzheimer’s care ordered up a brain MRI that by her own analysis showed “severe to profoundly impaired memory,” for which her professional recommendation was to “Enjoy old age and word search puzzles.” Super. Helpful.
What that meant back at home was business as usual—mom trying to keep up with the household tasks she always had done, and Dad trying to assign her a steady stream of admin duties, as if her brain just needed a little more of a workout to sharpen up. The turning point came when they were visiting me and Buck approached every meal like it was his last. He admitted that at home Nina no longer shopped or cooked. With minimal sleuthing, it dawned on us that the fresh food that used to accumulate in their refrigerator had been replaced by Costco containers of ready-made meals and snacks. Perhaps out of sheer hunger, they were both on board to find answers.
FINDING THE BOTTOM LINE
As with everything, if you delay dealing with something long enough, it falls down on you like a ton of bricks. I happened to be home visiting when they got the long-awaited neurologist appointment, and went along with Nina and Buck to take notes. This was in 2014, and at the time we were told that the only way to conclusively diagnose Alzheimer’s was post mortem; but I’d also heard that it was possible to see lesions and various signs of brain degeneration through MRIs, CT scans or PET scans. The world puzzle slinging behavioral analyst had seen something on the MRI, but what did it mean?
The neurologist did a basic memory test, and with every simple question—What day is it? What season is it? Who is the president? Can you read the clock and tell me what time it is? —the answer became painfully clear to us all. He also had her do some motor skills tests, which were similarly deflating. Without any further lab work or scans he made his diagnosis. It was the first time anyone said the word Alzheimer’s and there was no gray area in whether she had it or not. After years of waiting and wondering, all the tests the neurologist used to make his diagnosis could be performed in any office with nothing more than a wall clock, a pencil and a piece of paper.
After a blurry wrap-up to the appointment, the neurologist finished with one more crushing, necessary detail. “I have to inform you that I am required to report this to the DMV. They will take your license.”
THE WHAT IFS OF EARLY DIAGNOSIS
Now, getting an early diagnosis of Alzheimer’s and dementia—with tests that are getting better and more accessible— allows you to find treatments that might be beneficial at earlier stages of the disease, and critical support that is needed at every stage. It also maximizes the potential significant benefits of lifestyle changes and can mean eligibility to clinical trials.
I often wonder if getting the diagnosis five years earlier would have made much difference. During those years Nina and Buck enjoyed fun trips they might not have had the gumption to take had she worn the Alzheimer’s label. How might her grandkids or friends have seen her differently? But even ten years ago an earlier diagnosis would have eliminated years of uncertainty and fear that Nina privately endured. It would have offered Nina some strategies and tools to find helpful routines and systems, and given us all more time to find and plan her care, with her input. It certainly would have eased the burden and stress on Buck.
I’d also like to think the diagnosis would have led us to exploit and savor our time with her. Perhaps we could have employed common sense to ease up on her responsibilities without taking away all of her sense of agency and purpose; made more of an effort to maintain social connections with smaller social settings rather than shying away from them entirely; found ways to maximize things she could do and find reasonable workarounds for things she couldn’t; stopped correcting her and simply focused on loving her. We certainly could have prepared for a smoother transition. She didn’t need to get the diagnosis and have her license revoked all in the same day.
THE UPSIDE OF DOWNER NEWS
In a way, the diagnosis was a relief for Nina. It offered her an explanation for why everything had become so slippery, why it felt so overwhelming to keep up with the challenge of regular daily tasks. After she’d had some time to digest the diagnosis, she announced to her closest friends, “I’ve got Alzheimer’s!” with a “Eureka” like tone, because it meant solving a long-standing mystery. Finally, she could stop pretending to keep up, as if everything was fine. It also completed a protracted baton hand-off, whereby Dad went from being impatient and frustrated with Nina’s changing capabilities to accepting his role as caretaker.
I recently heard Anne Lamott on the podcast “Wiser than Me” describe how she and her siblings, in their mother’s last years, berated themselves for all the wrong decisions they’d made, in situations none of them had ever encountered. In the midst of it, a kind Hospice worker reminded her, “How could you know?”
The good thing is that now, ten years after our own D-Day, we do know much more about how to diagnose, treat and live with the disease. Lifestyle choices are one way we can absolutely minimize our risk factors. And that. my friends, is what we’re talking about next week.