Could persons with advanced dementia have a kind of moderate “locked-in syndrome” (LIS), which impairs their ability to talk, walk, feed themselves or take care of personal hygiene? We can see the impairments, but is the person’s “true self” still intact, somewhere beneath the surface of observable behaviors and neurologic deficits, or is that impaired also?
Many well-considered dementia teaching programs have students wear clunky gloves, greasy goggles and earmuffs to simulate the probable sensory input problems with dementia or Alzheimer’s. The gear also limits fine motor skills and the physical ability to perform one’s own personal care.
As caregivers try to understand the effects of dementia, it seems natural to get into speculations that touch on the philosophy of the mind, self and identity (link for an excellent psychiatrist/caregiver essay: persistence of self / personhood over time in dementia, etc.). The concepts go beyond the physical, so they become “meta-physical.” Yeah, caregiving sometimes seems like a daily tango with philosophy, or at least ethical actions, but let’s put that aside.
Self and identity issues are popular cinematic diversions, so go see The Matrix, Avatar, the Star Wars sequel trilogy or Jumanji: The Next Level movies ( OldGuy found the last one hilarious, and it even depicts some aging issues, with actors Danny DeVito and Danny Glover now in their 70’s). Caregivers, go take the time for yourself!
A polar opposite older movie, Johnny Got His Gun, gives a horrifying image of how frightening and frustrating an LIS variant might be: a severely disabled WWI vet quad amputee can barely communicate with his nurse, but does so by a grueling Morse code. Wikipedia has an amazing list of persons with LIS, and how it’s been portrayed in books, film and media. It mentions Stephen Hawking and a character in The Count of Monte Cristo.
Disease states can cause LIS, in which consciousness + alertness are intact, and inputs are received, but a person can’t react to them easily. Diseases that rob muscular activity, like Amyotrophic Lateral Sclerosis (ALS), or brainstem injury are the usual examples.
Anesthesia provides a medical model of LIS, because “neuromuscular blockade” is commonly used during major surgery. There are numerous case reports of persons being fully aware during an operation, feeling excruciating pain, but unable to express it. This would happen if the blockade worked, but the other meds to block pain and consciousness didn’t work well enough.
One article from last year reviewed imaging ways to detect “consciousness” in vegetative persons. Another article discussed the concept of “pseudo-syndromes” in Parkinson disease, (including “pseudo-dementia”!?); they both beg the question about how one defines observations in these conditions.
Advanced dementia is usually not described in terms of LIS, so this is just a provocative notion. But are the seemingly random outbursts of agitation really limited and non-specific responses to angst, discomforts and frustrations, physical and emotional? (Since communication output might be a problem, some folks have tried Assistive Technology of various sorts.)
The point is that it’s all too easy to slip into thinking the person with advanced dementia is so impaired neurologically that it’s affected their “self,” that they are “not really here,” not present and conscious. Perhaps the rare cases of “terminal lucidity,” / “awakenings before death”, do show that there is some persistence of personality, despite neurologic decline.
Neurologists and neuroscientists do have some notions about the localization of alertness (reticular activating system), adolescent and judgment behaviors (prefrontal cortex) and wisdom (fronto-striatal-limbic circuits). Not gonna delve into substance dualism, but one does not find the anatomy of the “self” easily, I guess, so thank goodness for metaphors and the humanities!
Most family caregivers probably know this all intuitively. At family gatherings, we hardly ever think about each other’s internal selfhood status, and personhood (more of a legal term?) status is assumed. But we’re usually dealing with observable behavior and emotions, expressed wants and perceived needs. And fun, right? The family person with caregiving needs requires more focus, gets more scrutiny, and so questions arise.
The TV hospital bromide is to have actors at the bedside carelessly [pun intended] talk about the patient as if he or she isn’t even present. That happens in caregiving, of course, but it just takes the occasional flash of a broad smile, so obviously genuine and authentic and typical, that helps us realize that the core person is with us, here and now.
[Note: if you click the links above, one or two may just give a citation, since some medical articles are behind paywalls, sorry. I was able to read them through a university library, so that might work for others.
Two of the problematic citations: Brown J. Self and identity over time: dementia. J Eval Clin Pract. 2017;23:1006–1012. and Owen AM. The search for consciousness. Cell Neuroview. 2019; 102:526-528.]
[Image: Dali, “Galatea of the Spheres,” 1952, cropped, CC0 Andre on Flickr.com]
