Looks pertinent. I wonder if the vaccine for COVID itself could accelerate hippocampal decline to accentuate dementia rather than slow it down. That's my mother's case. Any tips for me?
Beautiful and thoughtful. But what makes you exclude long covid - do we even fully know why the brain fog? Isn’t there also mRNA harms that may include protein frame shifting? Human medicine and physiology has changed since 2020.
I appreciate the honesty, the straightforwardness. Thank you for showing your patients respect and for sharing with the rest of us that treatment is always a choice (at least it should be).
I really liked this article. Personally speaking, I have decided to not answer and honestly don’t like the patient’s question when they ask, “If this was your father/mother, what would you recommend?”
My immediate thought is: “sir/mam, you are not my father/mother.” Also, what if I don’t have a great relationship with my father or mother, what if I’m biased to be a maximizer of health care or a minimizer of health care. These things bias me heavily and I don’t want my biases to influence the patient.
I have come to realize the best method for me has been to give information, project what all the alternate pathways lead to, get to know the patient and their desires. And speak frankly, and let the patient decide.
I lived with my grandma who is being treated for LATE dementia for a year so she could extend her time at home. My mother and I insisted on scrupulously telling her the truth about her dementia, that she had it, that she couldn't live alone, and that when I moved out she would have to move to a facility that offered 24/hr care. She kept forgetting and then filling in explanations that didn't require her to eventually leave home. She'd think I was staying because of her recovering broken hip, had only been there a few weeks, or was staying because she needed someone to drive her out to eat because she couldn't drive anymore. And we corrected her every time. Now she is at said facility and insists that no one ever told her or that she was ticked or that she thought it was temporary. We never let her believe that.
Should we have let her believe a story of her own creation to comfort her in the moment? Maybe. But if we had, I think I'd feel guilty now when she insists that no one told her the truth. On the other hand, telling her the truth consistently certainly has not worked out either.
According to the Alzheimer's Association website, Lecanemab is approved only for patients with confirmed EARLY Alzheimer's. It may give them 5 more months of quality time by holding off progression. Per the manufacturers of said treatment, the annual cost is $26,500. Make it make sense.
"I recommend the story that lets you keep being yourself, for as long as you can." AMEN! As a nurse and a nurse educator, I tend to harp on this point. I see surgery recommendations made for chronically ill 80-year-olds that will NOT improve their ability to " keep being yourself, for as long as you can" but cause them to spend the next 3 months in and out of the hospital instead of at home in their garden with their family. They die at the end of 6 months anyway. Thank you for your approach.
Beautiful. There are times when not taking a stance is taking a stance.
Whatever the cause, the patient experiences brain fog. That is not likely to help her see clearly how to navigate her options.
I am always hoping that my doctor will tell me the risk/benefit of any treatment he suggests. And the risks of not treating too (besides 'you could die from it').
Covid esp. repeated, like many other infectious diseases, overtime can induce or speed up dementias and neurological problems though. So it could be both, i guess.
Rather than amor fati, I’d prefer a pointer to the metabolic health researchers starting to chart the way to actual solutions for the prevention and treatment of Alzheimer’s. It may be early days, but to me exploring that route would be greatly preferable to both the system default the author lays out and the denial the patient reverts to.
Yes! The tension between patient autonomy, shared decision-making and beneficence (or making recommendations) is real.
Looks pertinent. I wonder if the vaccine for COVID itself could accelerate hippocampal decline to accentuate dementia rather than slow it down. That's my mother's case. Any tips for me?
I always appreciate the thoughtfulness of your articles.
Great piece. Distilled complexity, identity of the story, and call out of pitfalls of neutrality. Liability be damned. The patients story does matter.
Beautiful and thoughtful. But what makes you exclude long covid - do we even fully know why the brain fog? Isn’t there also mRNA harms that may include protein frame shifting? Human medicine and physiology has changed since 2020.
I appreciate the honesty, the straightforwardness. Thank you for showing your patients respect and for sharing with the rest of us that treatment is always a choice (at least it should be).
I really liked this article. Personally speaking, I have decided to not answer and honestly don’t like the patient’s question when they ask, “If this was your father/mother, what would you recommend?”
My immediate thought is: “sir/mam, you are not my father/mother.” Also, what if I don’t have a great relationship with my father or mother, what if I’m biased to be a maximizer of health care or a minimizer of health care. These things bias me heavily and I don’t want my biases to influence the patient.
I have come to realize the best method for me has been to give information, project what all the alternate pathways lead to, get to know the patient and their desires. And speak frankly, and let the patient decide.
I lived with my grandma who is being treated for LATE dementia for a year so she could extend her time at home. My mother and I insisted on scrupulously telling her the truth about her dementia, that she had it, that she couldn't live alone, and that when I moved out she would have to move to a facility that offered 24/hr care. She kept forgetting and then filling in explanations that didn't require her to eventually leave home. She'd think I was staying because of her recovering broken hip, had only been there a few weeks, or was staying because she needed someone to drive her out to eat because she couldn't drive anymore. And we corrected her every time. Now she is at said facility and insists that no one ever told her or that she was ticked or that she thought it was temporary. We never let her believe that.
Should we have let her believe a story of her own creation to comfort her in the moment? Maybe. But if we had, I think I'd feel guilty now when she insists that no one told her the truth. On the other hand, telling her the truth consistently certainly has not worked out either.
Sometimes there is no right path.
According to the Alzheimer's Association website, Lecanemab is approved only for patients with confirmed EARLY Alzheimer's. It may give them 5 more months of quality time by holding off progression. Per the manufacturers of said treatment, the annual cost is $26,500. Make it make sense.
I 'd make it required reading for all medical school graduates ( maybe drop histology ... ...)
"I recommend the story that lets you keep being yourself, for as long as you can." AMEN! As a nurse and a nurse educator, I tend to harp on this point. I see surgery recommendations made for chronically ill 80-year-olds that will NOT improve their ability to " keep being yourself, for as long as you can" but cause them to spend the next 3 months in and out of the hospital instead of at home in their garden with their family. They die at the end of 6 months anyway. Thank you for your approach.
I totally agree with you about the story recommendation. Thought this was the best, most insightful sentence of this article.
This article was very insightful. Thank you for humanizing the profession in a way we cannot ascertain in a 10-15 minute followup.
A beautifully written essay by a caring physician.
After 40 years in primary “care,” I came to see that Caring is Primary, along with being informed and primum non nocere
Beautiful. There are times when not taking a stance is taking a stance.
Whatever the cause, the patient experiences brain fog. That is not likely to help her see clearly how to navigate her options.
I am always hoping that my doctor will tell me the risk/benefit of any treatment he suggests. And the risks of not treating too (besides 'you could die from it').
Covid esp. repeated, like many other infectious diseases, overtime can induce or speed up dementias and neurological problems though. So it could be both, i guess.
Rather than amor fati, I’d prefer a pointer to the metabolic health researchers starting to chart the way to actual solutions for the prevention and treatment of Alzheimer’s. It may be early days, but to me exploring that route would be greatly preferable to both the system default the author lays out and the denial the patient reverts to.