This new phrase, Alzheimer Syndrome, came across my radar earlier this week, I think through a LinkedIn post someone had made. I was directed to The Center for Applied Research in Dementia’s YouTube video on Alzheimer Syndrome. The Center’s website also has the video, “… our latest presentation, ‘Alzheimer Syndrome,’  which offers a thought-provoking way of looking at Alzheimer’s, and dementia in general.”

I was interested to see what it was all about, since dementia, by definition IS a syndrome. A syndrome is a group of symptoms. This means that dementia is a collection of symptoms, typically including progressive memory loss, loss of executive functioning, and other cognitive abilities.

Alzheimer’s Disease is the most common diagnosed type of dementia – it is only one of over 100 of types (or causes) of dementia. Alzheimer’s is considered a disease because it has a distinct pathology – the plaques and tangles that form in the brain. This is getting a bit into the medical terminology, but it is important because what we name and call diseases and syndromes actually tells a lot about what is going on.

Taken from the DSM-IV, summary courtesy of the University of Hawai’i and clinical psychologist Elaine M Heiby, PhD:

SYMPTOM

• refers to an observable behavior or state.
• there is no implication that an underlying problem necessarily exists or that there is a physical etiology (cause).
• the simplest level of analyzing a presenting problem.

SYNDROME

• the next higher level of analysis
• this term is applied to a constellation of symptoms that occur together or co-vary over time.
• the term carries no direct implications in terms of underlying pathology.
• Whether, in fact, certain sets of symptoms co-vary with one another is an empirical question.

DISORDER

• like a syndrome, refers to a cluster of symptoms.
• but the concept includes the idea that the set of symptoms is not accounted for by a more pervasive condition.
• As with symptom and syndrome, there is no implication of etiology (a cause).

DISEASE

• a disorder where the underlying etiology (cause) is known.
• It is the highest level of conceptual understanding.

What is really being said when we call it Alzheimer’s Disease, then, is that there is some disease (which is a disorder of structure or function that produces specific symptoms or affects a specific location and is not simply a direct result of physical injury) that is causing the dementia (syndrome) symptoms. Compared to a syndrome (which is a group of signs and symptoms that characterize an abnormality), like the other dementias.

In my reasoning, in a time in science when researchers are trying very hard to determine what causes dementias, why, and how it progresses, and we have a defined pathology for Alzheimer’s, it seems like a bit of a back-step to now to remove the acknowledgment of the pathology and disease status.

True, there is some other muddy issues surrounding Alzheimer’s Disease, like how it is certainly the most diagnosed form of dementia, but that doesn’t necessarily mean it is the most prevalent type of dementia. It just means that more doctors give a diagnosis of Alzheimer’s Disease than of other types of dementia. In fact, many researchers believe that mixed dementia is likely the most common form of dementia, but is often misdiagnosed as Alzheimer’s Disease. Alzheimer’s gets a lot of attention. And doctors (as well as the general public) become most familiar with that type of dementia. The only way to definitively know that it is, in fact, Alzheimer’s Disease, is to look at the brain upon death and notice if there are the hallmark plaques and tangles.

So, I watched the YouTube video. I was hoping for some convincing explanations. Dr. Camp starts the video saying, “let’s think about the importance of the words we choose, especially when dealing with persons with dementia.” I’m thinking, great! he’s going to explain why he is choosing to re-name Alzheimer’s.

He then goes on to say how when we are diagnosed with a disease, that word causes a series of assumptions within us, and one of the main ones is the need for medical care. Well, yes, but so does the diagnosis of other syndromes and disorders – like other dementias, Autism Spectrum Disorder, depressive disorder, Fibromyalgia, etc. The word disease may not be what causes these mental frets, but rather the gravity of the disease or syndrome does. He then goes on to talk about how Alzheimer’s is medicalized, meaning that a lot of research focus is on the medical, biological, and pharmacological aspects of the disease. But, then, he makes his “bold” statement of “what if we thought of Alzheimer’s, and dementias in general, more like how we thought of Down Syndrome.”

Well…. it already is thought of like that because it IS a syndrome!

The second half of the video is on how changing the name, and now calling it Alzheimer Syndrome would magically lead to a great deal of advancement in how we promote living with dementia.

Imagine, there would be extensive efforts to include people with Alzheimer Syndrome into society. There might be Special Olympics for people with Alzheimer Syndrome, educational programs, training programs, there might be legislation to allow people with Alzheimer Syndrome to maintain employment… they would be protected by the Americans With Disabilities Act. Stigma currently associated with dementia would be greatly reduced and frowned upon by society.

There are already educational programs, training programs, and legislation efforts – even some particularly focused on employment. Granted, they are not as widely available and fully developed as we all would like, but it’s not like they don’t exist. And I still don’t see how changing part of the name would reduce stigma. I would say that the stigma that is there is more associated with the word Alzheimer’s than with the word Disease. Furthermore, there are already many studies and theories surrounding stigma and diseases or health issues, and they don’t indicate that changing a name would greatly reduce the stigma and make stigma frowned upon.

The video goes on to talk about how if we started calling Down Syndrome as Down’s Disease, now these people would be treated by being given drugs to increase their intelligence, and now there would be huge fundraising efforts in order to find a cure for Down’s Disease, there would be no Special Olympics, no special education, no training.

I would also say that Down Syndrome also has stigma associated with it – using that as an example in the video seems to miss the point they are trying to make. I also don’t think that if it were suddenly called Down’s Disease that all the special education, Special Olympics, etc. would just go away.

Take Parkinson’s Disease as an example. It has a specific pathology which qualifies it as a progressive neurodegenerative disease. It is different than Parkinsonism, which is a clinical syndrome. Parkinson’s Disease is the most common cause of Parkinsonism, but there are also other causes that lead to the same symptoms which are not Parkinson’s Disease. There are also a range of types of Parkinsonisms, such as Parkinson Plus Syndrome,

From Wikipedia:

In terms of pathophysiology, Parkinson’s Disease (PD) is considered a synucleiopathy due to an abnormal accumulation of alpha-synuclein protein in the brain in the form of Lewy bodies, as opposed to other diseases such as Alzheimer’s disease where the brain accumulates tau protein in the form of neurofibrillary tangles. Nevertheless, there is clinical and pathological overlap between tauopathies and synucleinopathies. The most typical symptom of Alzheimer’s disease, dementia, occurs in advanced stages of PD, while it is common to find neurofibrillary tangles in brains affected by PD.

Dementia with Lewy bodies (DLB) is another synucleinopathy that has similarities with PD, and especially with the subset of PD cases with dementia. However, the relationship between PD and DLB is complex and still has to be clarified. They may represent parts of a continuum or they may be separate diseases.

To me, Parkinsonism is a closer example of a condition which we could compare dementias to. They both have a broad term for the syndrome (group of symptoms), i.e. Parkinsonism and Dementia; they both have at least one classified disease with it’s distinct pathophysiology, i.e. Parkinson’s Disease and Alzheimer’s Disease; they both have sub-types with differential diagnoses based on the symptoms expressed and the areas of the brain affected, i.e. progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy (also known as Shy-Drager syndrome) and Frontotemporal dementia, Dementia with Lewy Bodies, Vascular Dementia.

The point I am trying to make, is that doctors and researchers have put forth great efforts to differentiate these different types of neurodegenerative conditions – they present different symptoms, progress differently, and respond to medications and treatments differently. It is not just to name new things and fill pages in diagnostic manuals, it’s because their differences are important and need to be understood when diagnosing and treating the conditions. And I’m not saying there shouldn’t be discussion on how we name dementias, but it should be a discussion based on high quality and peer-reviewed research. There has been and still is discussion in the research community on whether or not there could be more than one type of Alzheimer’s, which leads some to refer to Alzheimer Clinical Syndrome, Alzheimer Neuropathology, or Alzheimer’s as an Autoimmune Disease.

The conclusions of the video are more agreeable with me.

The message is that we as a society need to view persons with Alzheimer’s Disease or any other form of dementia as persons with disabilities. Just as we build ramps to allow persons with challenges to mobility to have access to their environment, to their communities. So we must build cognitive ramps as a society to enable persons with dementia to have the same access….We must change the way we think about the way we think and talk about persons with dementia…We must choose our words wisely.

I agree that focusing on adjusting environments to be more accessible for people with dementia (and other cognitive disruptions) is moving in the right direction. I also agree that we could do better to distribute the funds that to go dementia research, whereas the majority of it now goes towards biological and pharmaceutical research on Alzheimer’s Disease. In general, and partly thanks to the DSM itself, we over-medicalize society and have found a way to diagnose just about everything (the DSM-V even has criteria to diagnose normal grief, such as after the loss of a loved one…. and the goal of these over-diagnosing behaviors is essentially to be able to prescribe medications – yes, over 70% of the authors of the DSM-V have direct financial ties to the pharmaceutical industry). And I think it’s great that we are challenged to choose and use our words more wisely, especially if we are wanting to build more sensitive and respectful societies.

In conclusion, I didn’t think the video made a strong argument for now calling Alzheimer’s Disease as Alzheimer Syndrome. The video talks about how it will break down barriers, reduce stigma, and open up doors for people with Alzheimer’s. But it doesn’t say how changing the name will lead to these things. From what I gather from the video, they seem to think that removing the word disease from Alzheimer’s will suddenly de-medicalize it, and the result will be less focus on medications to control and cure this type of dementia. But, I don’t think these will be remedied by changing Alzheimer’s Disease to Alzheimer Syndrome. And the video fails to make any convincing arguments that a change in name is either warranted or will bring about the desired changes.

Have you seen the video? I would love to hear your opinions on this topic in the comments below!

You can watch the YouTube video here: