Last month, we ran a podcast on issues around deeply forgetful people, featuring Stephen Post, Director, Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University. Dr. Post is an internationally recognized authority on Alzheimer’s disease and other disorders of memory.

Here he is in conversation with Stonybrook neurosurgeon Michael Egnor (July 25, 2024, 1:15:33 duration). Below are some excerpts from the transcript:

Michael Egnor: What do you mean by deeply forgetful people?

Stephen Post: I’ve been working with deeply forgetful people and their caregivers since I went out to Case Medical School in 1988, and I have never felt comfortable with the term dementia, at least in a public sense because it’s a term of decline dementia from a former mental state, and it very easily leads to negative metaphors like husk, shell, gone, absent, even dead vegetable and the like. That’s very unfortunate, because it, first of all, leads us to think about them being so categorically different from us. So it’s a “them versus us” type thing.

But also it blinds us to noticing, and noticing is a very important word, noticing the hints and the expressions which are sometimes spontaneous and sometimes elicited by music or nature or olfactory type phenomenon, apple pie, people come back into themselves to varying degrees and our job is to notice and to embrace that and to stimulate it and so that we can realize that grandma is still there.

Dr. Post talks about the way people diagnosed with dementia tend to retain symbolic rationality, and Dr. Egnor asks him to expand on that, which he does by offering several examples. Here’s one:

Stephen Post: I tell the story in the book of a fellow I met at a nursing home in Chardon, Ohio, and it was a special care unit. Joe Foley, the famous neurologist and I, who was my mentor, we went into Jim’s room and we read his little bio sketch on his wall and we knew he had a couple of sons. And the nurse guided me out with Joe to meet Jim, and I took Jim to a table. We sat down and I said, “Jim, how are your sons?” And he couldn’t respond.

But then I said, “How’s Davey and how’s Luke?” And by using language to cue him and prompt him, he actually lit up a bit. He wasn’t conversant, but he lit up and then he had a white twig in his hand, talk about symbols, a white twig in his hand. It was painted white and the ends were blunted and wasn’t harmful in any way, and he put it in my hands and he smiled this effusive smile, and if love was electric, that place would’ve been on fire, Mike. And then he said to me three words. He said, “God is love.”

And it turns out,when I asked the nurse, that he grew up on a farm in North Eastern Ohio. His father was a Christian and they went to church and his father loved him very much, and Jim associated tender loving care with that period in his life to which he had gone back. And that symbol, that white stick was a symbol for the kindling the nurse said. And his father had always had him go out and get the kindling in the morning as he was growing up. And so that was his way of reconnecting with his loving dad.

Dr. Post is the author of Dignity for Deeply Forgetful People (Johns Hopkins University Press 2022). One of his earlier books is The Moral Challenge of Alzheimer Disease (Johns Hopkins University Press 2000).

When the lights suddenly go on in the deeply forgetful mind…

Michael Egnor: When you refer to paradoxical lucidity, what do you mean by that?

Stephen Post: Well, I’m talking about the roughly 80% of caregivers who self-report moments of absolutely surprising lucidity. They assumed that their loved one was gone absent a husk, a shell, incapable of being present in any significant sense. And yet lo and behold, that individual either is totally spontaneously or sometimes prompted by symbols, by personalized music, will actually come back into themselves.

Music is the most effective in this area. There’s a national movement called Music and Memory, and one of our medical students and myself, Angela Lo, did a study of personalized music using an iPod here at the VA nursing home on campus. And we were in a unit where there were probably 30 individuals. They were all sitting in chairs. None of them were speaking, they were ambulatory to some degree. We took them into the activities room.

These were all, of course, veterans and the big television on the wall with the furling flag in the wind, the music was God Bless America. I will tell you that 80% of these people actually stood up and sang a few lines, if not a whole verse, if not the whole song of God Bless America. And when they did that, they became somatically active. They were affectively present, they were capable of expressing all kinds of emotion that wasn’t that sort of distant flat look that you generally associate with deeply forgetful people. They were more there than not there.

Dr. Post coins a word for this type of memory event: rementia, as opposed to dementia. A key question is, how to develop treatments that make it more common.

Does paradoxical lucidity support dualism

Michael Egnor: It’s very interesting that there were a number of classical neuroscientists, Eccles, Sherrington, Penfield, Benjamin Libet, who were dualists and who really embraced this viewpoint that the mind and the spirit have an existence that’s separate from the brain and the body. But you see less of that nowadays among neuroscientists. Why do you think there’s then such a materialist turn in neuroscience?

Stephen Post: … the materialism of it all is a relatively Johnny-come-lately approach. And the argument I think, is that it actually is somewhat implausible. It’s implausible to think that somehow this rementia, this experience of rementia, this return of a personal identity that that could be explained purely in terms of some small segment of brain tissue, I think it’s unlikely.

Here’s the whole transcript.

Next: New directions in dementia prevention and research

See also: Paradoxical lucidity: Is dementia research missing the forest for the trees?