a test with better accuracy

undermining Alzheimer's

An article in the online version of the New York Times stoped me this afternoon. Amid the ridiculous back and forth in social media regarding bullets or glass, baseball proficiency in high school, or moans regarding the opening ceremonies Friday night in Paris, Alzheimer’s conjures up fear,

memories and questions.

The eye-catching, “A Blood Test Accurately Diagnosed Alzheimer’s 90% of the Time, Study Finds”, seized me. I had been scanning the news to make sure something hadn’t happened in the world that was a better topic to cover today than what I had planned. As the retired daughter of a woman who suffered dementia in her closing years, the entire subject of systemic, irreversible memory loss and associated behavoral changes lurk near the top of my thoughts all of the time—and I would dare say you too have given it a thought or two. We fear this evil with good reason.

No, tests never confirmed Alzheimer’s per se when she died in 2013, but my mother began interspersing memories (and fears) with live events in the fall of 2009. I came in one evening to find her packing intently. Huh. Why?

My mother began living with me in the autumn of 2008 for financial reasons. She wanted to be in a place of her own but didn’t like the place she was in briefly after she sold her own home. I did the math mentally as she complained about people not being friendly at this facility. By the time we hung up I had extended the invitation. My brother did the heroic effort of clearing out the stuff she could not bring in his car as I lived in a two bedroom place.

It had gone alright, but with a few rocky moments since she and I could be equally stubborn. One afternoon when she got mad at me about something I can’t recall, she dragged the yellow pages out of the closet, paging through it frantically. When I asked what she was doing, she irritatedly said calling a cab. Trying not to laugh, I asked what the address was to give the cab since I was sure she had forgotten where we were as she has no cause to remember the address. Sure enough, it defused things when she acknowledged she had no idea.

But when I got home that October 2009 evening, my mother explained patiently but intently that she had been gone from my dad for a long while so she had to get home to him. He was expecting her.

The problem was he died more than twenty years before and she had sold the house where they had retired in the Ozarks.

Curiously, Alzheimer’s did not flash before my eyes as an explanation at the time. Perhaps it was because I had worked a long day, fought the daily traffic battle, or that it seemed a weird incident. Instead, I explained to her gently that she had to remember my dad had passed away in the late 1980s and that she lived with me now.

She hesitated but did not break down crying or argue vociferously; she didn’t dispute me at all. She became a silent, nodded, and put the suitcase back in the closet. We chatted for the remainder of the evening before her bedtime. I considered it a closed matter, some aberration perhaps linked to the brief hospitalization she had about six weeks earlier.

It startled me, needless to say, when she touched my arm at about 3 the following morning to say she was ready to go. She had clearly been up for a while, was fully dressed, and had completely forgotten our conversation the night before. She said she just had to get home to my dad. I reiterated our prior evening chat, thinking perhaps I had not spoken slowly enough or she was more tired than I realized the night before. But, I still did not focus on why was this happening.

Looking back, the signs were all there a couple of years earlier. My brother had gone out to help her after a branch penetrated the roof during a vicious ice storm. He called me to say the house was going to be fine after repairs but that he could not believe the volume of solicitations all over the house: the junk mail people get from someone claiming to be a saint for Native American children if you donate to some address. He noted it was almost impossible to walk in one of the rooms as this stuff was in piles all over.

I now understand that inability to handle money is a classic initial flag for Alzheimer’s. I had been trying for years to get her out of the three bedroom house she no longer needed but she refused until 2008.

But, the insidious damage of memory loss gradually unmasks itself in any victim. The early October attempts to return to the Ozarks seemed to be an aberration not repeated over the next four weeks. She returned to her normal countenance, welcomed my future sister-in-law with grace, enjoyed her family who celebrated her birthday, and carried on as she had for her whole life.

I will always believe the shock of an trauma accelerated her decline as she was never even close the same woman following a fire in the condo in early November. I wasn’t home from work yet so we’ll never know precisely how it started but, as true with so many fires, the water damage to my unit and the two below was devastating. My mother was home with the cats, both of whom were traumatized. My mother was so deaf that she never heard the horrible blaring of the smoke alarms but wondered why water was filling the place. Hearing the voice of the Fire Department lady say “Your mother is ok, but…” was beyond unwelcome even if my mother was ok.

She never stepped back into the condominium, living first with my former sister-in-law and my nieces (to whom my gratitude even fifteen years later is boundless), then a retirement community my brother somehow found. In the course of all of the moving and the bazillion pieces of mail she had accumulated, she had allowed her long term care insurance (bought smartly by my father years earlier) to lapse. I am surprised she remembered it ever existing but she had forgotten to pay it so we had only a portion of their costs to offer this place. But, remarkably, they took her.

Most relevant, the frequency of mental lapses accelerated dramatically and became almost entirely composed of family secrets I had never heard. They were not happy, either. It filled in some gaps in my knowledge but I didn’t trust that they were entirely accurate, thinking instead they were projections of fears as much as actual events. My brother, who somehow managed to drive well over a hundred miles daily to see her, saw the same things I did, though he seemed far less surprised by it all than I was.

She also became viciously, particularly to my brand new sister-in-law. My mother accused her of things that would have sent me flying to another state but we all know now it was one of the other effects of the disease.

Eventually, over her final year, we heard nothing about her mother and father. She had long ceased discussing how own husband of 37 years as if my father had never existed. Looking at it as abstractly as I can, it was a horrifying trend about which none of us could do a bloody thing. It ended, mercifully for my mother, when she passed away late in 2013, with what I have always assumed was probably Alzheimer’s but certainly dementia along with some effects of being a smoker for nearly seven decades.

Needless to say, Alzheimer’s is a fear I cannot shake. With diagnoses around globally rising to roughly 32 million as the number of elderly increase, I know many others share my concern. I also mourn for those who have lost their loved ones to this wretched thief or are seeing it consume someone right now.

Yet, I hold hope through science. I know billions in research investment is seeking a way to reverse and stop this illness. I also know, because I am a health junkie, that we are not there yet.

Every time I forget a person’s name or search for a word, the sinking fear of the “A word” hits me for a few seconds. My patient husband invariably tells me not to worry, that I still have a superb memory, and the like, but it drives me to read stories searching for some magic bullet I can institute as an answer for my possible genestic predisposition—which I may or may not even have. Yet, I know it is far more complicated than anything I can do.

So, I am definitely generating more anxiety but probably not changing my likelihood of the disease much.

The New York Times article indicates that the study unveiled this weekend at a major international specialists’ conference in Philadelphia is not a generalized test for people without symptoms. So, I don’t have to wonder if I should take it.

The cited Swedish study tested those already manifesting symptoms. The results will open the door to many peer reviews to assure its conclusions of 90% accuracy are correct but it is yet another piece in understanding this dreaded disease.

I don’t know whether anyone would have administered the test to my mother had she still been with us because we already knew we were losing her by the final months of her long life. At her final birthday, my brother and I took balloons and made a big fuss but it was clear that, despite his almost daily visits, she had lost his name and never mentioned the names of his children. In the curiosity of this peculiar hollowing of brain material, she never forgot my name nor that of my children even though she saw them infrequently.

What we all want, of course, is a cure for this plague but a test with high accuracy to clarify the diagnosis is a step forward. I know that many people in the United States no longer trust science and the iterative process of discovery, blind peer review, and further review but I am so thankful we pursue scientific advances as that’s the only way we are going to beat this.

Actions create consenquences.

Thank you for reading this column today. I welcome your experiences, fears, or advances in addressing this sad topic. I appreciate you reading Actions today or any day. Please feel free to circulate it if of value to others. Thanks especially to the Actions’s subscribers.

Be well and be safe.

Pam Belluck, “A Blood Test Diagnosed Alzheimer’s 90% of the Time, Study Finds”, NewYorkTimes.com, 28 July 2024, retrieved at https://www.nytimes.com/2024/07/28/health/alzheimers-blood-test.html