When I had to select a population to work with for my clinical psychotherapy training, I was drawn to elders because in contrast to other populations, I believed I would not be expected to ‘fix’ anyone. We cannot cure aging, right? (Wrong, but that is another story inspiring my thesis about America’s anti-aging myth.) I was lucky enough to find a training site that believed as I did—- a person is a person no matter what, an orientation called humanism.
Where I worked, the diagnosis I come across most often was that of dementia. The single greatest ‘risk factor’ for dementia is age, therefore, in working with elders, it is an often presented diagnosis. Like other aspects of aging (wrinkles, gray hair, etc.) dementia affects everyone differently. From a humanistic orientation, a perspective on dementia can be opened to where one can hold the medical realities of decline AND be curious about what else is present or may be emerging. It is from this humanistic perspective that I will explore a dementia diagnosis, offering a foundation in the medical model and expanding from there.
What is dementia?
In the field of psychology, the handbook for diagnosis is called the DSM (Diagnostics and Statistics Manual). The most recent permutation of this tome was released recently. While dementia is still considered an acceptable term because of its prevalence in common language, the diagnosis clinically now falls under a category called Neurocognitive Disorder (NCD), with types ranging from Alzheimer’s to traumatic brain injuries. See Dr. Al Powers’ post for the pros and cons of this change. A name can be a powerful thing and I still struggle with knowing the best term for this phenomenon. What is the most empowering and respectful? For communication sake, I currently oscillate between the clinical NCD and the colloquial dementia.
Let’s break down dementia’s new name: Neurocognitive Disorder
- neuro means having to do with the brain
- cognitive is a fancy way of saying thinking
- disorder the opposite of order, effectively means functioning in a new way
The basis for giving someone a neurocognitive disorder diagnosis amounts to determining that their brain works differently than most in at least two ways. Cognition, or thinking, is the easiest part of the dementia experience to measure. Eminent dementia researcher and practitioner Tom Kitwood (1995) in his article Positive long term changes in dementia: Some preliminary observations explained:
The culture of the western world has itself tended to set a high premium upon cognition; its established system of education, for example, is designed to differentiate people on the basis of their cognitive performance, while neglecting the sensibilities. It is also the case that in dementia the changes that occur in cognitive function (especially short-term memory) are relatively simple to measure, and these have provided a legitimate basis both for assessment and for drug trials.
When a diagnosis of NCD or dementia is given it is most likely that it is based on these easy to measure cognitive differences. But there is a lot more to the picture. There is a unique person who is experiencing changes physically, spiritually and cognitively. There are people who care deeply about them and are with them on this journey. Can we remain open and curious about these changes? Many argue the value of children should not be based solely on their test scores nor, I argue, should the value of elders.
I want to be clear; I know and see daily the challenges and suffering dementia can bring. I also know and see daily the beautiful joys and learning it can bring, to those experiencing it and those that care for them. Can we have a perspective on dementia that holds both the challenges and the joys? They are not mutually exclusive.
For more on this perspective on dementia come see The ChangingAging Tour’s show Disrupt Dementia.
Hi,
I am an Aging 320 student at the Erickson School of Aging, and I enjoyed reading your post on more appropriate wording for dementia and other mental disorders. I think using the term “Neurocognitive Disorder” is a broader term that more people may be comfortable with using rather than making an assumption on a mental illness due to a factor like aging. And while the goal of bringing forth this new term is to reduce the negative stigma attached to terms such as “dementia,” I agree with some of the other comments that this too is a stigmatization. Most often times there is a negative stigma surrounding these mental disorders as the forefront images are usually those of the challenges that come with having these disorders. However, the negative stigma can be shifted to a more positive connotation when viewing these neurocognitive disorders in a different light. For example, according to the experimental model of dementia, from an article called Dementia Beyond Drugs, dementia is not viewed as something that affects all cognitive abilities, rather “that people may retain complex and integrative abilities far into their lives with dementia” (Power, 2010). Looking past what a mental disorder is or does and focusing more on the person as a whole may help in becoming more aware and sensitive of the terminology we use when referring to these topics.
Power, A. (2010). Dementia Beyond Drugs. Other Eyes (pp. 77-86)
Hi Kyrié,
Just my humble opinion, but I think “neurocognitive disorder” medicalizes and stigmatizes people. Disorder has negative connotations as in something that is abnormal; it doesn’t just mean “functioning in a new way.” I tend to think of “evolution” as “functioning in a new way” but I’m not sure the world is ready to embrace the term “cognitive evolution”!
I have trained myself to refer to “cognitive change” rather than any of the medical terms, even dementia. As you have pointed out, people who are on a journey through cognitive change have much to offer and much to enjoy.
Glenna Wilder, MA
Thank you, Glenna Wilder. I couldn’t have said it better. But I can add something.
To give a name to anything is to set it apart, and to call it a “disorder” is to make a cultural judgment. The truth is that some of us elders have better things to think about than the trivial details or fleeting moments you others might consider worthy of recall. And some of us have developed coping mechanisms — effective, if not always popular — for dealing with a world that insists on directing our attention. Some of us snort; others leave the room. A few of us just smile. Instead of talking about us to others, identifying us as suffering “neurocognitive disorder,” speak TO us, and address us as Smilers.
Yes. Re-minding folks to speak or engage with us, once they recognize that we may be experiencing cognitive changes will challenge all of us to expand our experiences of being human.
Glenna,
I love cognitive evolution! That really speaks to the phenomenon.
Jim-el,
I could not agree more.
Thank you both for adding your voice to this conversation.
Cognitive changes feels accurat, definitive and, frankl, less scary for what i experience. My optimism sparks more than the pull of fear. Thank you.