Sounding the Alarm on Dementia Care
March 2022 Newsletter, featuring a Webinar Event with Charles Camosy
I’m thankful to Charles Camosy for writing this month’s opening post, which introduces you to his new book Losing Our Dignity: How Secularized Medicine is Undermining Fundamental Human Equality.
My own intellectual/political thought has been enormously shaped by Charles’s writings (especially his book Resisting Throwaway Culture: How a Consistent Life Ethic Can Unite a Fractured People), and I’m delighted to host a webinar event with Charles on March 7 at 5 p.m. (EST).
During that discussion, we will discuss Losing Our Dignity, consider what a “consistent life ethic” means, and hopefully also talk about Magenta, Charles’s new book series with New City Press.
Sign up for the webinar using the button below:
When an author finishes a book and sends it to the printer, as Gracy knows well, it can be a bit frightening. You’ve spent all this time crafting this thing, editing this thing, and then editing it some more. You’ve done your research, you’ve thought hard about counterarguments, you’ve sent it to several people to get their critical feedback—and still you aren’t ready to put it out there into the world.
What if you missed something? What if someone else writes something that you want to cite? What if some big new piece of news or study is about to come out that you just simply have to address?
Though overall I had a good launch last summer for my new book Losing Our Dignity: How Secularized Medicine is Undermining Fundamental Human Equality, not two months later the New York Times published their dramatic investigative reporting on a central issue of my argument: how we discard populations with advanced dementia in the United States.
It is bad enough, of course, that we essentially warehouse them in poorly funded nursing homes until they die, but after the Times’ reporting we now we know that an astonishing 1 in 9 nursing home residents are ‘diagnosed’ with schizophrenia. This is up a shocking 70 percent since 2012—not because the disease has become more prevalent or more diagnosed, but rather because doctors want to prescribe them antipsychotic drugs.
Yes, you read that right. Doctors are now routinely making false diagnoses of psychosis for nursing home residents.
Why? Well, essentially they want to put residents with advanced dementia into a “chemical straightjacket” rather than put their already strained resources into caring for them. This despite the fact that these drugs nearly double the chances of death, infections, falls, and other serious problems.
This couldn’t be a better illustration of my central argument in Losing Our Dignity: because we’ve lost our only basis (a theological one!) for claiming that all human beings are fundamentally equal, the next human population to be cast out of this circle of protection will be human beings with dementia. These disabled populations—because they don’t have the rationality, self-awareness, autonomy, etc. that able-bodied human beings have—don’t deserve the same kinds of resources put into their care.
Over the next several years, as the population with dementia doubles, I argue that we will move away from abandoning them to death—and instead move toward a combination of robot ‘care’ and straight-up euthanasia. That is, unless we can find a way to push the culture in a very different direction. I call for short-, medium-, and long-term approaches to try to do precisely this.
In the medium term, I suggest that this issue—which has not yet been politicized along our catastrophic right/left antagonistic binary—is actually one in which traditional religious believers can still have significant sway in our political culture. We can call for more public resources to be used in care for these populations and, at least in principle, get the support of everyone from common good, pro-life conservatives to anti-ableist progressives. If this kind of dialogue fails to move the broader culture, then in the longer run it will likely be up to the Christian churches (along with Jews and Muslims who share our theological anthropology) to reinvent themselves as caregivers for this population on a massive scale.
In the shorter-term, however, I argue that there are many practical things many of us can do in our own lives to address the dementia crisis. Here are just a few:
Put our families first. Realize that just as our parents and other adults in our family circles had an obligation to make great sacrifices for us, we have an obligation to make great sacrifices for them, especially as they age. Resist the cultural temptation—often (but not always) driven by cultural consumerism—to live far away from family members who would support us, or to live far from those we have a familial obligation to support in the first place.
Resist the cultural temptation—again, often (but not always) driven by cultural consumerism—to limit artificially the number of children we bear, adopt, or foster. Smaller families face more challenges in supporting each other than do larger ones. Also resist the cultural temptation to think of the home as closed to all but a single nuclear family. We can work to create spaces for older family members, especially as they lose the capacities deemed of greatest value in a secularizing and irreligious culture.
Regularly and formally volunteer in nursing homes, especially those that serve those with dementia, not only to signal publicly the equal human dignity of these populations, but also to aid overworked caregivers and staff. Invite someone who isn’t as plugged into these issues to accompany you on your volunteer visits and generally encourage encounters between younger and older generations. The power of encounter is formidable for changing our mindset.
Consider (second?) careers or intense service projects oriented toward human beings who have lost or are losing the traits our dominant culture finds valuable. Many find themselves trapped (again, often because of consumerism) in careers and projects they dislike, or even hate. Getting out of those careers may free us up to meet the deep challenges ahead.
Most importantly, however, talk about our dementia crisis often. Put it on people’s radars. Throwaway culture flourishes when we use language which hides what is actually going on. In part because so many of us are likely to face dementia ourselves one day, it is something that many understandably don’t like to talk about. But the ostrich approach to a crisis only serves to make the crisis worse. We need to get comfortable with talking about this uncomfortable issue. This deepening crisis.
Indeed—and I write this as someone with a long track-record of track record of trying to dial down alarmism—it is time to sound the alarm.
Charles Camosy is an Associate Professor of Theology at Fordham University in the Bronx, where he has taught since finishing his PhD in theology at Notre Dame in 2008. Among other places, his published articles have appeared in the New York Times, Washington Post, and Los Angeles Times. He is the author of six books: Too Expensive to Treat? (Eerdmans), Peter Singer and Christian Ethics (Cambridge), For Love of Animals (Franciscan), Beyond the Abortion Wars (Eerdmans), Resisting Throwaway Culture (New City). and Losing Our Dignity: How Secularized Medicine is Undermining Fundamental Human Equality. He is also the founding editor of a new book series with New City Press called The Magenta Project.
How have you seen or experienced the perils of an elder care crisis in your family or community?
Do you have thoughts on the practical steps Charles offers for countering this crisis, or have you thought of other ways to fight it?
Please share your thoughts in the comments (or via email), and don’t forget to join us on March 7 to discuss these issues with Charles live!
articles + essays
ABC News and the BBC both have lists of organizations, nonprofits, and businesses supporting Ukrainian refugees. If you are feeling helpless in the face of what we’re seeing in Ukraine, and would like to help, I hope and pray this offers some tangible ways to respond and to serve.
NPR reported in late January on the nursing home staffing crisis impacting the elderly and caregivers across the U.S.
I really appreciated Substack posts from Addison Del Mastro and Chris Arnade this past month. Addison’s thoughts on structural inequality are sobering and important, and gave important context to Chris’s pictures of Holyoke, Massachusetts—including a bus stop with no bench—and Jacksonville, Florida.
In this Comment Magazine essay, Debbi Chachra suggests that “Our infrastructural systems, particularly our energy systems, are largely built around the idea of localizing the benefits to their consumers and distributing the harms.”
Michael Sacasas considers attention and distraction: “There is a critical question that tends to get lost in the current wave of attention discourse: What is attention for? Attention is taken up as a capacity that is being diminished by our technological environment with the emphasis falling on digitally induced states of distraction. But what are we distracted from? If our attention were more robust or better ordered, to what would we give it?”
Anna Turns writes that “regenerative fashion” seeks to reimagine the relationships between consumers and their clothes, fellow humans, and landscape.
I love this piece on plastic by Jeanette Cooperman. She considers the Age of Plastic as a subset of the Anthropocene, and asks us what it will take to reinvent the way we live: “A crocodile who lives along the Palu River in Indonesia has spent the past five years with a rubber tire around his neck. It constricts the size of prey he can swallow and sets him apart from the other crocs, but he crawls along, adapted to his bulky necklace. We are a lot like him, lugging around all our plastic, reconciled to this weird baggage that constricts us in ways we do not even realize.”
Anandi Mishra lauds the pleasure of unsent letters and cards.
Caitrin Keiper reviews Susannah Clarke’s Piranesi, and the power of forgiveness: “The real enchantment does not reside in the House but in the possibility of restoring communion and love, as often as it is lost, again and again, like the tides rolling out and washing in.”
Lilian Pearce considers life in an environmentally toxic place: “A strong sense of place does not necessarily correlate with pro-environmental values. Sometimes we are pushed—even coerced—into complex, intimate forms of kinship with places. Sometimes these relationships are beneficial, or benign. But sometimes they can become dangerous or deadly under the influence of global systems of capital, power and the evasion of responsibility.”
Don’t miss this stunning essay from Inkcap Journal on rewilding the Lake District.
books
Dedicated, Pete Davis
Thank you to everyone who joined us in reading through Pete’s book, Dedicated, in the month of February! I deeply appreciated all your insights and perspectives on the book. If you’re interested in becoming a subscriber and reading through the posts, you can do so here.Protection, by Molly McCloskey
This was a fascinating novel about time, nostalgia, and memory. In a way that’s both witty and poignant, McCloskey considers the appeal of what she calls “hang[ing] out in pause.” What’s the relationship between living in the world and going against the flow, between embracing change as inevitable and idolizing the past? (The book contains some sexual content and language, as a warning.)Aggressively Happy, by Joy Clarkson
Joy and I talked about her book on Zoom last Thursday (here’s a link to the recorded conversation), and I hope some of you will consider reading it. The book considers the subversive, difficult rhythms of joy we have to cultivate in order to sustain happiness in a world of suffering. Joy at one point considers happiness as a boat in a sea of sadness. I think Aggressively Happy gives us a very resilient depiction of joy—one rooted in deep truths, and thus able to withstand the bitter, broken, and cynical aspects of lived existence in our world.This photo essay by the New York Times shows how a book is made, from jacket to binding to bookstore.
food
I’m impressed with this artisan loaf recipe (made with instant yeast, not sourdough). I stuck the mixture in the fridge around 5 p.m. on a Saturday evening, and baked it at approximately 12:30 p.m. the following day. It rose beautifully, and had a gorgeous crust. Have another loaf rising in the fridge now.
I love these Tamagoyaki-Inspired Scrambled Eggs from Food52. We ate them again this morning with a side of sautéed bok choy and rice, and I expect them to become a regular breakfast.
I love recipes that help us to use up bits and scraps of things that otherwise have to be thrown away, like this kale stalk pesto. What are some of your favorite ways to use scraps, whether of produce or of other things?
Finally made the New York Times’ “Perfect Chocolate Chip Cookies” recipe. Mine spread a bit more than they’re supposed to (I think mixing them by hand made a slight difference in consistency), but they are still my favorite chocolate chip cookies I’ve made. (You just have to wait 24 hours to taste them, which is always a tough sacrifice when chocolate chip cookies are involved.)
Recipes to try: Molly Yeh’s soft almond sugar cookies, and Yotam Ottolenghi’s sweet potato shakshuka with sriracha butter (!) and pickled onions.
listening
At the recommendation of Granola subscriber Rebecca, I’m listening to Jonathan Franzen’s novel Crossroads on audiobook. If you’ve read it, I would love to hear your thoughts.
John O’Donohue considers the “inner landscape of our lives” on this episode of the On Being podcast.
One year ago: “Regional storytelling, loving place, and a book excerpt”
Two years ago: “Working together” + “Sharing ideas, articles, and (actual) granola.”
My book: Uprooted: Recovering the Legacy of the Places We’ve Left Behind.
All the usual stuff. I notice that he's not discussing wiping the shit from your elderly, Alzheimer's patient father or what to do when he, virtually crippled with joint pain AND hampered with a catheter and loose Foley bag, wakes up disoriented and climbs out of his hospital bed in the middle of the night when the rest of the family is desperate for some sleep. Trips, falls, rips his scalp open and it's off to the hospital again.
This is the dark side of modern medical care: keeping medically fragile people alive when back in ye good olde days, those people would have died much earlier. My father would NOT have survived with his type-2 diabetes AND his nonfunctioning bladder AND his osteoporosis AND his underlying kidney disease AND his Alzheimer's.
I wouldn't put my animals through this hell.