Depression's role

After I was diagnosed with Alzheimer’s disease in 2015, I was given Aricept, one of the two main drugs for people still in the early or middle stage. But without anyone asking me, I was prescribed an antidepressant. But the doctor seemed to suggest that anyone with Alzheimer’s would be depressed. In my case, I felt much better after I left my job. In fact, within a week, I felt much than I had for the past two years. For me, leaving my job quickly was a godsend.

 My vocation as a writer allows me to work at home. And that is one reason why I don’t often get the blues. But the fact sheet is quite dated: 2003. That was the same year that Joanne Koenig Coste published Learning to Speak Alzheimer’s, a book that has had a huge impact in this century. Here are some of the more relevant points. At that time, in  2o percent to 40 percent with Alzheimer’s become depressed. “Identifying depression  in Alzheimer’s can be difficult. There is no single test or questionnaire that can lead to a diagnosis.” The fact sheet notes that apathy itself can be a symptom of depression.

“The first step in a diagnosis is a thorough evaluation. Side effects of medication or an unrecognized medical condition…of the evaluation will include the person’s mental and physical state.” Key elements include apathy, which can lead to a vicious circle. Patients may be trying, but without a lot of support—from one’s spouse or another significant person—the patient may lose faith that things can better. The fact sheet notes, “Dementia itself can lead to certain symptoms commonly associated with apathy. “Cognitive impairment may be experienced.”

According to the fact sheet, this is what many of my cohorts and I should expect—a slow, long trek where the victims’ families will bury their dead. According to a group of investigators with much experience in studying dementia, the *National Institute of Mental Health proposed the diagnostic. Here are some of the listings from the fact sheet: “Significantly depressed mood—sad, hopeless, tearful; decreased positive feelings; social isolation; disruption in appetite that is not related to another medical condition; disruption in sleep; agitation or slowed or; disruption that is not related to a medical condition.

*This is not the current name of this building.

A sturdy template

Pam MacLeod, who works in the Massachusetts Executive Office of Elder Affairs, describes herself as a program development professional. Since early in her career, she has helped foreign, state and municipal governments develop new policies and programs and now she works to address the burgeoning number of seniors, a good many of them with Alzheimer’s or some other form of dementia.

She joined Elder Affairs in June of 2014 and became involved in the Dementia Friendly movement in 2015.

“We heard about and learned about the Dementia Friendly movement,” MacLeod commented.” We wanted to see what Minnesota was doing as they had already become a national model.” Wisconsin was another state that emerged as a leader. And now Massachusetts itself could become an example to other states. To get things started, they consulted Olivia Mastry of Minnesota, a prominent figure in the Dementia Friendly movement. Not long thereafter, Massachusetts became an “early adopter” of dementia friendly practices along with only a handful of other states.

An example of the Dementia Friendly movement was a planned community in the Netherlands established in 2006, called Buurtzorg. It was a remarkable breakthrough. Over time, this Dutch outpost provided a new model for dementia care. A decade later, in the Boston area, I witnessed a large audience at a kick-off event for Dementia Friendly Massachusetts. “We had quite a turnout,” MacLeod noted. On my weekly blog, I had unprecedented “hits” on my blog. Typically at that time, I would get around 300 visits a week. But that week I got around 900 visits. And that wasn’t a fluke. The next week I got close to 600 visits. How this happened is that there was a critical mass of people who wanted to learn more about the  dementia friendly movement. And if the organizers had settled on a smaller venue, much of the vitality would have been sapped. In the logistics business, you have to plan well ahead.

The four tenets of the organization are that people want control for as long they can; people strive to maintain or improve their lives; people seek social interaction; and people seek ‘warm’ relationships’ with others. With that in mind, I am looking forward to observing the movement grow, in the U.S. and beyond.

For real?

I first came across Dr. Dale Bredesen in November 2016, when he was invited to appear on the Today program. Now, he has published a book of close to 300 pages, in which he claims that he has found the key to not just stop Alzheimer’s, but reverse its damage. For many people in the field, this might sound like science fiction. But, after all, solving Alzheimer’s disease has become the holy grail of the early 21st century. It’s not just the terrible toll inflicted on the victims. Family members are often drafted into being “volunteer caregivers,” which can put pressure on the whole family.

            The book opens with the fact that even the gods of the biotechnology world rarely make a splash, and when they do, failure is almost foreordained. This was the case in 2018, when Biogen almost overnight raised the hopes of people with dementia to think that Alzheimer’s might be domesticated—the way AIDS became a manageable disease after Magic Johnson showed the world that the HIV virus could be just another manageable disease.

But here is a downbeat message that we might be hearing for decades: The human brain is too complex to be “fixed” by mortals. My understanding is that only the most recently diagnosed would benefit, should a breakthrough drug arise, not people already into the middle phase of Alzheimer’s, like me. That was my takeaway. Am I fatalistic? Not really. But I am realistic. The failure of Biogen’s compound set me back, and I started to direct myself to focus on the time I have left—the original purpose of my blog.

But as Bredesen puts it, “Alzheimer’s disease has become part of the Zeitgeist.” I rarely go a full day without seeing or hearing about the topic, whether online or in print or on the radio or in a podcast. Bredesen is ambitious. A key insight of his is that Alzheimer’s is not a unified disease, but three distinct pathologies. “Each one requires a different treatment. Treating them all the same way is as naïve as treating all infections as the same.”

Bredesen introduces “Kristin,” who at the time was considering suicide. Her mother had died from the disease after 18 years of decline, “And at the end Kristin had suffered alone, for her mother was no longer sentient.” At 65, Kristin started to show the telltale signs of Alzheimer’s herself. Common symptoms arose: “Unable to remember numbers, she had to write down even four digits, not to mention phone numbers.” She began to get lost in what previously was common terrain. According to Kristen, she confided to a family member, “Did you know I had Alzheimer’s disease?” The family member answered, “Of course, it was obvious. I just did not want to say anything to you about it.” Reluctantly, she retired. For Bredesen, the next sentence is crucial: “Alzheimer’s disease does not arise from the brain failing to function as it evolved to” [author’s italics]. And “Kristen was Patient Zero,” according to Bredesen.

Since 2016, Bredesen has been illuminating his main point. Chapter 3 is titled, “How Does It Feel to Come Back from Dementia?” Confident? Most important, it doesn’t tell you what Alzheimer’s disease actually is.

Chapter 4 provides a primer for the Bredesen program. And this is where I have a qualm. Not a big one. More of an inconvenience. From early on, and even before my diagnosis, I was following the Mediterranean Diet. After I was diagnosed with early-onset Alzheimer’s, I was gladdened to learn that the Mediterranean Diet was for real. After I left my job, I began to dose myself daily. That was well more than three years ago. But the two approaches to diet are almost opposites. Let’s just say that I am playing on someone else’s football field.

Bredesen’s program, called ReCODE, is a three-part approach that is supposed to fight “the three neurothreats (inflammation, shortage of brain-supporting molecules, or exposure to toxic substances) that the brain responds to with what we now know as Alzheimer’s.” The first part is a diet to fight inflammation by avoiding trans-fats, sugar, and gluten. The second part of the approach is using exercise, hormones (“such as oestradiol and testosterone”), and vitamin D and folate to increase “brain-derived neurotrophic factor (BDNF).” Finally, he says to “eliminate toxins” as “an effective way to reduce toxic induction of amyloid.” This last approach requires identifying your exposure to toxins, removing their source, “and then detoxification that includes ... detoxifying food such as cruciferous vegetables, pure-water hydration, sauna-based removal of a specific class of toxins, and increasing critical molecules such as glutathione.”

So what are my options?  Be stubborn? I’d be a fool not to give the Bredesen approach a chance. But in the weeks and months ahead, I may be pining for my favorite foods, which include steel-cut oats, soaked overnight, and then cooked another 10 minutes in the morning. Of course, I would follow the Bredesen protocol for a trial, assuming that I can get into some kind of trial. But I will miss my olive oil, and my daily crusty bread as my communion loaf—assuming that Bredesen’s diet doesn’t pan out. I have doubts. Too many brilliant minds have met their match in the sticky amyloid in the human brain.