As soon as the video came on, I knew I was witnessing my mother’s final moments. It was too loud for me to tell her anything — that I loved her; that I was grateful for everything she had done for me; that I was proud of all she had accomplished — and I convinced myself that it would be easier to speak if I could take a few minutes to get off the ship and call back from a quieter spot. By the time I was able to ring again, she was gone.

The awful truth is that I said goodbye to my mom a long time ago. She first showed the lasting signs of Alzheimer’s Disease more than a decade ago and her decline was steep but lengthy. Despite continuing to travel to remote areas of Africa and Asia as a volunteer health worker — a path she picked up after joining the Peace Corps in retirement with my dad — she knew something was wrong. Her memory and judgment started to fade rapidly just before the pandemic, and I took whatever opportunities I had to share my feelings with her. COVID-19 isolation took its toll and by the time we could spend time together, she no longer knew who I was.

My experience with Alzheimer’s is one shared by millions of people around the world. Right now, in the U.S. alone, six million people are afflicted with the disease or a related form of dementia. And that number is expected to explode over the next 25 years to 13 million cases with the long tail of aging Baby Boomers. The failure rate for new therapeutics has been remarkably high. The two approved drugs have significant downsides, but that could change as artificial intelligence and modified mRNA treatments demonstrate greater viability.

What else could help?

We must prioritize Alzheimer’s as a public health threat and focus greater resources on reducing many of the root causes that scientists now suspect are linked to increased likelihood of developing the disease.

For years, I was among the many people who believed that Alzheimer’s Disease was largely linked to genetics. If my mother had it, and my grandmother had it, then there was a good chance Alzheimer’s was in my future as well. But this is wrong. Only 1 percent of cases are inherited, and most are related to rare, early-onset forms of the disease.

Increasingly, scientists are finding stronger links with other health threats — hypertension, inactivity, diabetes — that could signal predisposition. Reducing these chronic health issues has been a white whale in public health — it’s notoriously difficult to encourage people to adopt healthier behavior.

The expected boom in Alzheimer’s Disease cases comes with a unique opportunity.

One of the most effective ways to change behavior is by providing people with a single person or patient with whom they can identify. It’s called the identifiable victim effect, and it works like this: humans frequently get overwhelmed by large numbers — the thousands of people who die in a war, or get infected with a virus, or suffer from malnutrition. Stories that include statistics and big numbers lose their punch because the scale overwhelms us. We are numb to the impact as it relates to our own lives.

But when we hear a story about one person who is similar to someone we know, or we experience a health episode ourselves, we are significantly more likely to change our behavior and to advocate to those around us to consider alternatives. This may be a possible opportunity for course correction against Alzheimer’s: As more people experience their loved ones battling the disease or are thrust into the role of caretaker, the awareness of a connection between chronic disease and Alzheimer’s prevention could usher in a dramatic shift in healthier behavior among younger generations.

Such a shift can’t come too soon.

The projected economic burden from Alzheimer’s Disease is already $321 billion and is expected to top a staggering $1 trillion by 2050. Family and volunteer caretakers already spend 18 billion hours of unpaid time helping relatives with Alzheimer’s Disease. As more people like me enter the sandwich generation of caring for young families and aging parents at the same time, it is fair to assume that we will see a decline in productivity and corresponding increases in mental health crises and the kind of stressful behavior that fuels the cycle of health issues later in life. Outside of the companies that stand to profit from the health challenges of an aging population directly, the looming economic burden of Alzheimer’s should be a clear signal that chronic disease prevention is everyone’s business.

Framing Alzheimer’s Disease as a public health imperative linked to chronic disease prevention could be the catalyst we need to encourage younger people to adopt healthier behavior while there’s still enough time.

The post We Have More Control Over Preventing Alzheimer’s Disease Than We Think appeared first on Medika Life.

They drew blood at the many clinical trial sites, psychological testing was administered and the families, dutifully and in hope, brought their affected loved ones week after week. The trial would go on with hundreds of supposedly healthy, but impaired, older adults agreeing to all of it. And yet there was one piece missing in the trials and no one noticed it. What was it?

We stood at a major medical center in the New England states and talked about the patients, the test results, and the findings. Among those peering at the data were several interns writing dissertations on the disease, each one looking for a scrap on which to pin their epic piece of professional accomplishment.

I had recently returned from a trip to the Mid-West as part of my travels to various centers and I had one question that bothered me. As a psychologist, they trained me to look at people, but not confine my questions to one person, but to look at the group. After visiting at least ten centers, something became apparent to me and I had to voice my concern.

“Where’s the data on the caregivers,” I asked the group. They looked at me as though I must be falling into Alzheimer’s grip, too. Data on caregivers? No one was collecting that.

We know people don’t live in vacuums, and yet here was a multi-million dollar grant, written over weeks, that concentrated solely on testing the patient in every regard but one, the social side. Sure, they had a scale for that. How did they prepare themselves for the day? Were they able to dress, close their buttons, and comb their hair? Could they recognize themselves in the mirror? How did they interact with others?

I remembered my interaction with a couple where the wife began crying. Her husband, a former editor of a well-known journal, was frequently in the basement, fashioning bayonets from kitchen knives. The reason? He said he’d have to defend them once “they” came. Who “they” were was never mentioned, but they were out there and they’d be coming.

She had to put a bracelet with his name and phone number on it around his wrist when he went out on his bicycle now because he often got lost. Driving was out of the question after several car accidents. But the bike didn’t prove a suitable solution, either. Now, he had to wait and prepare at home and couldn’t leave her alone because they were coming.

As I sat and listened to her and many other spouses over the months of my travels, I became convinced that the protocol had a flaw; nothing about the caregivers. We didn’t ask them if they were depressed or anxious, or how they got through this incredible journey into darkness. Most of the time, they sat quietly next to the patient. This was less to help our research than to encourage the patient to take part.

I recall the husband who tried to eat paperclips because he couldn’t decide what was food and what wasn’t. Often, he’d leave the couple’s seventeenth-floor apartment, and, once out the door, he didn’t know which apartment was theirs. He’d opened the only door he found and was then locked into the stairwell.

Another patient, a woman in her 70s, once she took her eyeglasses off, couldn’t figure out how to put them back on. She also had difficulty at dinnertime, trying to eat the flatware instead of the food.

Imagine the frustration, alarm, and depression any of this can cause someone when it happens daily. How can anyone tolerate it without some help for their mental health?

We have diagnosed slightly fewer than seven million people in the United States with Alzheimer’s. If each of them has one caregiver, the number of people who require help with this disorder will be doubled. And, if things progress, thanks to medical advances, the number may quadruple in the next decade or two. But who is looking at the disease’s effects on caregivers, who, like the primary patient, are suffering from, if not with, Alzheimer’s?

I saw the mental torment of the man who had to drive his wife for almost two hours from their home to the testing center. “She kept changing the radio dials all the way,” he said, almost sobbing. “I couldn’t get her to stop.”

Then there was the extremely patient aide who had to keep coaxing an elderly woman with a promise of ice cream and lunch at a local deli. “All she wants to do is go for ice cream,” she said. The patient was delightful and used humor to answer every question. It turned out to be a common defense against memory loss and the pain it caused so many people.

One man, who had been married for almost fifty years, was on the verge of tears as he told me how his wife screamed when he tried to get into bed with her. “She keeps saying she has a husband, and he’ll come and find him there.”

Another man said that his wife was sure that someone was trying to break into their million-dollar home, so they had security systems put in at least three times. She never felt safe, whatever system was installed. And she kept firing the staff because she was sure they were stealing. In fact, she couldn’t remember where she’d put her jewelry and accused them of stealing it.

I turned to the group that day and asked what was the reason no measures were being taken for caregivers. As I recall, I said, “It’s a great resource for a dissertation any of you want to write.” I think that caught more attention than the computer screen.

Of course, that was two decades ago and we’re still trying to figure out how to help the other Alzheimer’s patients, the caregivers. How has the spread of this scary disease through social contact hurt their physical and mental health?

We have two groups that need to be assessed and treated, but we often fail to notice the second one.

The post The Forgotten Ones in the Tragedy of Alzheimer’s Disease appeared first on Medika Life.