"Limiting food and water has been used to hasten death in people dying at home since long before it had a formal name."

"But to accelerate decline this way for people with advanced dementia, whether their deaths are imminent or not, is uncomfortable territory for many.... While some patients are late enough in their dementia as to be nonresponsive, others may still be enjoying and requesting food and may not remember writing a directive to withhold it. 'Which person do you listen to: the person who had capacity once and made this decision that they wouldn’t want to live this life, or the person with dementia, who may seem very, very happy with the life that they have?' asked Dr. Eric Widera, a professor of geriatric medicine at University of California, San Francisco...."

From "She Didn’t Want to Live With Advanced Dementia. So Why Was She Being Kept Alive? Some consider the regular feeding of late-stage dementia patients to be nonnegotiable. Others see it as extending life unnecessarily" (NYT).

The article cites a paper that presents the idea of minimal comfort feeding: "The nursing staff could provide small quantities of food and liquid if the patient signaled she wanted it, enough to keep her comfortable while still allowing her to die."

"I'm going to have to put it together.... This is my house.... To me, there's just whirling going on.... I understand why I'm here...."

"He props his smartphone against a pile of books and adjusts the settings so the screen won’t go dark. He sets a timer. Then he waits."

"Eyes closed, Samuel A. Simon traces his breath from his ankles up through his chest, checking in with each part of his 80-year-old body before he begins. A purple binder holding a play script rests in his hands; the opening lines come from memory. Midway through, he falters. 'I’m getting all over the place,' he mutters, flipping a page. He finds his spot, then continues. Simon was diagnosed with early-stage Alzheimer’s disease in 2022. As his memory has grown less reliable, he has turned his experience with the disease into a one-man play, 'Dementia Man: An Existential Journey,' performing it publicly as a way to hold on to a sense of self.... Remembering one’s lines before a live audience is daunting — even without a disease that steadily erodes memory. Simon has chosen to take on that challenge anyway. For nearly three years, he has performed 'Dementia Man' in small theaters and public libraries across the country...."

From "He’s telling his story onstage even as Alzheimer’s takes his memories/Samuel A. Simon, a former public interest lawyer who worked with Ralph Nader, performs his 'Dementia Man' play to help himself and others come to terms with Alzheimer’s disease" (WaPo).

Eat Cheese or Die.

You may remember the old slogan:

The riff on New Hampshire's "Live Free or Die" license plate couldn't make it to the actual license plates here in Wisconsin, but it was the winner of our Wisconsin hearts and minds. Of course, in real life on real license plates, it had to be "America's Dairyland." And 40 years later, it still is... though it looks as though we might be about to replace it (with something simpler).

Anyway, speaking of real life, the implausible slogan — "Eat Cheese or Die" — may be (sort of) true. I'm reading "A Study Linked Cheese to Lower Dementia Risk. Is That Too Good to Be True?"

"In a conservative’s brain, psychedelics are not a drug. They are a medicine. In the old-school left psychedelic movement, they’re seen as a drug."

"That drug has healing properties, but it also has other properties that they celebrate that are not just medicine. I think what you might be seeing from mainstream blue communities is concern about looking like weirdo, hippie lefties if they support psychedelics. It also might be a commitment to mainstream medicine. It also could be, politically speaking, skepticism if conservatives like it...."

Said Kyrsten Sinema, quoted in "Kyrsten Sinema Is Ready for Her MAHA Turn/In a new interview, the one-time Democrat says the movement for psychedelic medicine should capitalize on the Trump administration" (Politico).

There's also this about her "ibogaine treatment" to deal with her mental distress over her grandmother’s dementia:

"It is the idea that we all contain the world and the world disappears when we disappear. There’s a word for that and I can’t f***ing remember what it is."

"That’s what I’m afraid of. I’m afraid of that happening to me and every time that I can’t remember a word or something, I think, 'This is the start.'"

Said Stephen King, quoted in "Stephen King on dementia — ‘I’m afraid of that happening to me’/The bestselling author, 77, talks about why he writes every day — and says each time he can’t remember the right word he worries: 'This is the start'" (London Times).

The article isn't entirely about the fear of your own brain pre-deceasing you. It's about other fears, including the fear of AI. King says:

“I don’t really care about AI. My sons [Owen King and Joe Hill] are both writers … and they’re all hot to trot about AI and how awful it is for writers.... I just think that it’s a foregone conclusion that people are going to write better prose than some kind of automated intelligence.... I think that once there is a kind of self-replicating intelligence, once it learns how to teach itself, in other words, it isn’t going to be a question of human input any more. It’s going to be able to do that itself. And then … have you ever read The Time Machine by HG Wells? In it, a Victorian scientist travels to the year 802,701...

I like how he has the precise year, down to the 1, still in his mind and worth saying as a challenge to the fiend, Dementia, that wants to infiltrate and destroy.

"In its various iterations across books and films, the dementia tragedy narrative tells a story of inexorable decline and universal diminishment..."

"... in which the afflicted person steadily vacates her body until she becomes essentially absent. While this process may include moments of lucidity or levity, nothing substantially positive, life-giving or new can emerge for the person or her family and friends — because the person as person is disappearing. 'My mother is just a body now,' Ms. Jong-Fast writes. 'She has dementia. She has breath and hair and pretty blue eyes but Erica Jong the person has left the planet.' She is 'dissolving,' 'slipping away,'  'a faint fragment,' 'an echo,' 'a zombie.' The trouble with this well established approach is not that the tragedy narrative is completely false."

Writes Lynn Casteel Harper — a Baptist minister and the author of "On Vanishing: Mortality, Dementia, and What It Means to Disappear" — in "We May Soon Be Telling a Very Different Kind of Story About Dementia" (NYT).

"The actor Gene Hackman died from heart disease at his home in New Mexico, most likely a week after his wife, Betsy Arakawa, died from the effects of hantavirus..."

"... a disease linked to rodents that can cause respiratory failure in rare cases, the authorities said on Friday. The revelation that the famous and reclusive couple had died of natural causes put to rest much of the speculation that followed the discovery of their bodies on Feb. 26. But it also raised new questions about the state of mind of Mr. Hackman, who investigators said had severe Alzheimer’s disease, and why the couple was not discovered sooner...."

The NYT reports.

Terribly sad to think of him, suffering from dementia and alone in the house with his wife's dead body. Had she been shouldering the entire responsibility to care for him, with no one backing her up, so that she could die and he would be helpless and no one would notice for a week?

"Ms. Mekel, 82, has Alzheimer’s disease.... In the not-so-distant future, it will no longer be safe for her to stay at home alone...."

"She does not feel she can live with her children, who are busy with careers and children of their own. She is determined that she will never move to a nursing home, which she considers an intolerable loss of dignity. As a Dutch citizen, she is entitled by law to request that a doctor help her end her life when she reaches a point of unbearable suffering. And so she has applied for a medically assisted death.... Dr. Bert Keizer is alert for a very particular moment: It is known as 'five to 12' — five minutes to midnight... the last moment before a person loses that capacity to clearly state a rational wish to die. He will fulfill Ms. Mekel’s request to end her life only while she still is fully aware of what she is asking. They must act before dementia has tricked her, as it has so many of his other patients, into thinking her mind is just fine.... Whose assessment should carry more weight, she asks: current Irene Mekel, who sees loss of autonomy as unbearable, or future Irene, with advanced dementia, who is no longer unhappy, or can no longer convey that she’s unhappy, if someone must feed and dress her."

From "She’s Trying to Stay Ahead of Alzheimer’s, in a Race to the Death/In the Netherlands, doctors and dementia patients must negotiate a fine line: Assisted death for those without capacity is legal, but doctors won’t do it" (NYT).

We hear about another woman who had "dreaded the nursing home, but once she got there, she had some good years.... She was a voracious reader and devoured a book from the residence library each day. She had loved sunbathing all her life, and the staff made sure she could sit in the sun and read for hours."

Understand the problem: Mekel has to go early.

"Sleep disorders can become more common as people age, and older adults tend to sleep more lightly and go to bed and wake up a little earlier than they used to..."

"... that is completely normal. But if there are dramatic changes in someone’s sleep habits, where they are starting their morning at 3 a.m. or are unable to stay awake during the day, it can be a sign of dementia.... One change that can occur specifically with dementia with Lewy bodies — another type of progressive brain disorder — is that a person might begin acting out their dreams. This is also true for Parkinson’s disease, which is related to dementia with Lewy bodies. Ordinarily, our muscles become paralyzed while we’re in REM sleep, which is when we tend to have the most vivid dreams. But in these two neurodegenerative disorders, toxic proteins attack the cells in the brainstem that control sleep paralysis."

From "Memory Loss Isn’t the Only Sign of Dementia/Here are five other common red flags to look out for" (NYT).

The other 4 are financial problems, personality changes, driving difficulties, and loss of smell.

I have loss of smell, so it was disconcerting to see that description of sleep.

"Someone who has biomarker evidence of amyloid in the brain has the disease, whether they’re symptomatic or not."

"The pathology exists for years before symptom onset. That’s the science. It’s irrefutable."

Said Dr. Clifford R. Jack Jr., an Alzheimer’s researcher at the Mayo Clinic, quoted in "Apparently Healthy, but Diagnosed With Alzheimer’s? New criteria could lead to a dementia diagnosis on the basis of a simple blood test, even in the absence of obvious symptoms" (NYT)(free access link).

But Jack and his colleagues are not saying to test everyone.

A 2015 Dutch study estimated that more than 10 percent of cognitively normal 50-year-olds would test positive, as would almost 16 percent of 60-year-olds and 23 percent of 70-year-olds. Most of those individuals would never develop dementia....

What's the point of knowing you technically have this dreaded disease if you don't have the aspect of it that is dreaded — the outward symptoms?

"During the visit, she noticed that her grandmother kept sending texts to her ex — that is, Ms. Woodard’s grandfather — and grew angry..."

"... when he didn’t reply. The thing is, her grandfather is dead. 'I’m like, "Mimi, you are going to be left 'on read' till your grave!"' Ms. Woodard told the crowd, using a term for a text not responded to. And yet, she recognized herself in that moment. 'Do you ever see your mom or your grandma doing something and you’re like, "that’s messed up"'— Ms. Woodard used a stronger word — 'but then you’re like, "I know I’ve got that inside of me"?'"

From "She’s Not Celibate — She’s ‘Boysober’/The comedian Hope Woodard is spreading the word about her yearlong break from sex and dating. One fan calls it 'this year’s hottest mental health craze'" (NYT)(free access link).

"A big part of the yearlong break from sex and romance is unlearning the unhealthy relationship patterns that often get passed down from generation to generation. 'Maybe we are one of the first generations of women where we don’t actually have to plug into a man for, like, energy and power and whatever,' Ms. Woodard said."

1. What do you think of the efficacy of 1-year breaks? If generations and generations have programmed a tendency into you, what are the chances you could "unlearn" it in one year?

2. What "generations of women" do you think she is referring to?

11 key risk factors for dementia.

According to a study reported in The London Times: "being aged over 60, living alone, poor education, having parents with dementia, being from a deprived background, male sex, having diabetes, depression, stroke, high blood pressure and high cholesterol."

"'What brought you here?' I asked. 'What brought me here?' The man paused. 'Hmm. I don’t know.'..."

"'He remembers,' [said Timothy Doherty, a senior officer specialist at F.M.C. Devens, which houses federal prisoners who require medical care]. Then he told me that the white-haired man had raped his granddaughter. Later, I wondered how much it should matter whether the old man remembered what he did. And what if he remembered sometimes, but not other times? Many people with dementia exist in a kind of middle ground of partial comprehension, or have memories that surface and then disappear. 'We get into difficult metaphysical questions about personhood here,' said Jeffrey Howard, a professor of political philosophy and public policy at University College London, when I told him about my conversation with the white-haired man. 'But you might think that there are two versions of the man: One of them deserves the punishment, and the other doesn’t. In order to punish the version of him that deserves it, you have to take along this hostage for the ride. It’s hard to see how that sort of collateral damage could be justified.'"

Writes Katie Engelhart in "I Visited the Men Who Live Behind Bars and Can’t Remember Where They Are," about prisoners with dementia.

ADDED: Elsewhere in the article, about a different prisoner, we hear that "his disease leaves him sexually disinhibited," so I don't see how the inability — or purported inability — to remember the rape supports freeing the man. But that's not what the article argues. It ends:

"According to some estimates, more than sixty per cent of people with Alzheimer’s disease will wander away from home or a caregiver..."

"... or become lost when an abrupt bout of confusion propels them from an otherwise familiar setting.... And yet a person with Alzheimer’s can’t simply be locked in at home. The loss of dignity and quality of life would be intolerable, and, as many caregivers discover, people with dementia can quite suddenly outmaneuver even those safety measures adopted with their input and consent. Wandering lays bare a painful truth about life with dementia: risk and freedom are inextricably intertwined...."

 
From "How to Find a Missing Person with Dementia/Searching for people with cognitive disabilities presents special challenges. Can we solve them?" (The New Yorker).

"The Alzheimer’s treatment donanemab, which is made by Eli Lilly, significantly slowed progression of the mind-robbing disease..."

"... according to clinical trial data released Wednesday by the company. Patients who received the monthly antibody infusion during an 18-month study demonstrated a 35% slower decline in memory, thinking and their ability to perform daily activities compared to those who did not receive the treatment, Eli Lilly’s data showed."

CNBC reports.

"That person I love is still there every minute of every day and that is my life. It’s unfortunate that she forgets things, well, don’t we all."

Said John Lydon in 2020, quoted in "Sex Pistols frontman Johnny Rotten’s wife dead at 80 after Alzheimer’s battle" (NY Post).

Do you "live in dread of" Alzheimer's disease?

I'm reading this Guardian article, "Stop drinking, keep reading, look after your hearing: a neurologist’s tips for fighting memory loss and Alzheimer’s/When does forgetfulness become something more serious? And how can we delay or even prevent that change? We talk to brain expert Richard Restak."

Neuroscientist Dr Richard Restak... in The Complete Guide to Memory: The Science of Strengthening Your Mind, homes in on the great unspoken fear that every time you can’t remember where you put your reading glasses, it’s a sign of impending doom. “In America today,” he writes “anyone over 50 lives in dread of the big A.” Memory lapses are, he writes, the single most common complaint over-55s raise with their doctors, even though much of what they describe turns out to be nothing to worry about.

Anyone over 50 lives in dread of the big A?!  Maybe he meant that as hilarious hyperbole. Maybe some people dread the big, famous diseases, and surely some of us fixate on Alzheimer's in particular, but we're not all disease-phobic. What's the point of wanting to stay alive and grow old if you're angst-ridden about what could go wrong when obviously something will go wrong?

Anyway, I like this about reading fiction:

A lunchtime TikTok break. I've got 8 selections. Let me know what you like.

1. Feeling really blessed and lucky to hear the northern bobwhite.

2.  Joe Biden explains sex.

3. The interior decoration style of various men, based on their clothing style.

4. A woman is mystified by the phenomenon that is pick-up basketball.

5. A cathedral of milk and other AI-generated images.

6. I don't usually select videos about dementia, however good they are, but this one is an exception — about remembering love.

7. The most steadfast sister comforts her brother.

8. Certified vibesmith teaches you how to vibe professionally.

"Lockdown was soul-destroying for Nora. She’s always been very gregarious so she couldn’t understand why nobody was coming around..."

"... and the few that did had to have face masks on. It was very bad. But she’s absolutely fine at the moment. My family is with her now; we’ve got a nice little unity going. The whole thing is to never let her feel lonely."

Said John Lydon (Johnny Rotten), quoted in "‘I know what it’s like to be frightened’: John Lydon on loneliness, lyrics and life as a Sex Pistol" (The Guardian). Lydon has been married to Nora Forster, since 1979, and she was diagnosed with Alzheimer's disease in 2018.

Of the Danny Boyle’s Disney miniseries about the Sex Pistols, he says: "It’s dead against everything we once stood for."

The reporter, Tim Jonze says Lydon expressed political opinions that were "largely incoherent":