A dreaded diagnosis, that dimmed and dooming dilemma. Feared, sometimes fought, too often forgotten. It is the grayest, ghastliest elephant in the room: dementia.
What is dementia? I, like many others who dedicate their professional efforts to its study and treatment, have no good answer. I believe we are lost in our lexicon, trying to define a brain state so vexing and elusive it drives us out of our minds.
I hope we can do better, and I am not alone. In a sensitive and forward-looking editorial entitled Dementia: A Word to be Forgotten, Drs. Trachtenberg and Trojanowski of the University of Pennsylvania argue that alternate terms are more appropriate for research, clinical, and everyday settings. From scientific and biological perspectives, dementia is unspecific and subjective. Within the walls of the physician’s office, delivering the diagnosis of dementia can erect unintended walls around patients and families; vulnerable individuals, assuming that the “cruel connotations in the lay language” actually apply to them, are unnecessarily isolated. The authors recount a patient and caregiver experience upon first hearing the term applied:
An immediate epiphany occurred, and suddenly the potential danger and threatening sentence of the word became manifest. It was frightening that somebody might say it to her while she was still able to fully grasp and sense its toxic effect and that it would hasten and seal her fate in the manner of a self-fulfilling prophesy. (Archives of Neurology 2008;65(5):594)
Words to Live by
Idiot, midget, lunatic, and many other pejorative terms have thankfully been excised from clinical and polite discussion. The resulting advantage goes beyond conformity to standards of socially-acceptable discourse. It enables the productive consideration of limitations which should not be dismissed or ignored. In the case of cognitive and behavioral disorders of aging, many resist confronting their concerns, preferring self-conscious group chuckles surrounding “senior moments.” What’s more, practicing physicians have few incentives or resources to probe for late-life neuropsychiatric conditions. While nihilism prevailed for some time, attitudinal change has taken hold. Proactive people are arriving at specialty evaluation centers with mild cognitive symptoms, well before one would ever consider dropping the D‑bomb. Consequently, we need to employ alternative concepts to signify the presence of potentially serious brain dysfunction.
Witness Brain Fitness
SharpBrains readers young and old already know that Brain Fitness is an achievable goal. Increasing public awareness and diverse tools and venues for pursuing successful brain aging now exist. Useful starting points for discussion are emerging, many reflecting the concept of positive cognition. But what do you call that ghastly gray elephant?
Brain Failure describes the loss of Brain Fitness, and fittingly refers to the state of mental degeneration and dependence experienced by millions. Of the many more aging individuals who are threatened to endure such a fate, the reasonable approach is to confront the possibility of Brain Failure by pursuing Brain Fitness. Nihilists and slackers are of course welcome to slip down the blissful slope toward Brain Disaster. Those who perceive signs of Brain Failure should seek help in identifying the biological and environmental determinants of their symptoms. Cognitive and behavioral disorders are common in aging, and are now routinely detected and treated at earlier stages than ever before. When medical and neurodegenerative diagnoses are communicated, there is no benefit in evoking stigma or sounding the death knoll. Regardless, if I had to choose an obsolete and hurtful label, I’d rather be senile than demented. Everyone familiar with Brain Failure understands it can be unremitting and cruel; we must also recognize that is remediable. Brain Fitness is still the goal, even in the throes of Brain Failure.
– Dr. Joshua Steinerman wrote this article for SharpBrains. Dr. Steinerman is Assistant Professor of Neurology at New York’s Albert Einstein College of Medicine, where he directs the Neurodegenerative Disease Clinical Trials Program.Ã‚Â He is the founding scientist of ProGevity Neuroscience.
Yes, good doctor you are on target Unless you have experienced a parent with dementia, you would not fully understand what lies within the lack of brain function…yet, in my eyes, we need to address the brain function which is still alive…one which says..what is wrong, I am sorry for acting this way..violent and incoherent and scared all wrapped up in one breath…it is the live brain that is the problem at this point America is beginning to come to terms with this illness. But, to institutionalize? NO that is not the answer. We need trained indidiuals to help with home care…the hospice team to recogognize this it terminal. Maybe not soon enough for them, but it is a fatal disease; one in which they do not die from. The brain will stop the heart or kidneys first and the death will be ill… I can go on…but the ones dealing with the patient are the ones who are troubled. Please write about that …the family..the search for help, the inablitly to pay high prices for good …and i mean good nursing care… help those of us who are trying and taking on two jobs..to help one ill dementia patient who still has a living part of her brain and is in distress..thanks jane
Instead of Brain Failure, I suggest Brain Insufficiency or Brain Dysfunction
i think you make a terrific point here that what we choose to call it, and what connotations that evokes for sufferers and their families, is a tremendously important issue in this disease. and i applaud you for opening a discussion of the issue. i am in this situation now with my grandmother, who recently stopped being able to live independently. i find myself at a loss with how to cope with my own sadness at what she’s going through, which is making me even less able to help her — especially since i dont have a mental image of how, and i think that has a lot to do with the framing of “dementia” culturally, as basically synonymous with “doom.”
i will agree with the poster above that “brain failure,” for me a as a non-medically trained person, is not neccesarily helpful to me in approaching what’s happening to my grandma. while i understand the analogy to “heart failure” — the word “failure” still sounds just as doomed in everyday parlance, whereas i know its more specific and precise in medicine.
what would you think about a term i haven’t heard used in a long time, “second childhood?” or a variation on that somehow. because, childhood isnt something you cure, which for me as the family member, i cant do for what my grandma is undergoing. but, depending on how others treat you, you can have a happy childhood or an unhappy one.
what do you think?
The article is helpful. My great-grandmother lived at home with Alzheimer’s until 89, then into a nursing home for the last two years of her life. ‘Second childhood’ certainly sounds warmer, and hopefully more optimistic than demented or senile. I particularly appreciate the concept that we can work with people having dementias and continue to engage in meaningful care. Good news, indeed!