Jargon causes confusion in Alzheimer's diagnosis
By Angela Lunde June 12, 2012
A recent reader wrote that her spouse had been diagnosed with "brain atrophy." She asked about information on brain atrophy in distinction from Alzheimer's. What's notable is that brain atrophy isn't a diagnosis; it just means shrinkage of the brain. It's not a disease, but rather the result of brain disease. It can occur for many reasons — the most common cause is Alzheimer's.
This all seems rather confusing. I asked my colleague, Glenn Smith, Ph.D., Mayo Clinic neuropsychologist, to help sort it out. Here's his reply:
"I wonder if the reader was given the term brain atrophy because in our health care system so much jargon is used and therefore understandably, misunderstood. I think that one explanation for the confusion is because families and health providers alike are afraid of the A word — Alzheimer's.
The good news is that we've come a long way from the days when everyone thought senility was typical of aging. We know and understand that thinking and memory problems aren't a part of normal aging. But now we have a plethora of related terms, yet each distinctively different in their meaning, terms such as mild cognitive impairment, brain atrophy, amnesia, cognitive decline, dementia, and Alzheimer's. What's confusing is that some terms describe an etiology, others a syndrome or a symptom.
In some cases, doctors may use the more vague terms to avoid breaking bad news. Alternatively, he or she could say "we can't really know until autopsy." The truth is however, that after an adequate evaluation, a doctor can offer a diagnosis that is accurate 90 percent of the time.
In addition to the confusing and widely varied terms doctors may use, patients and families will sometimes avoid hearing hard messages. Instead, they may grab on to certain words or stop short of asking for clarification or asking hard questions. This is both normal and understandable and often a first line of coping when receiving difficult news. Yet, clearly understanding a diagnosis is essential to coping and managing in the long term.
In order to receive a timely, accurate, and understandable diagnosis it helps to better understand some key terms. Let's start with three terms, etiology, syndrome, and symptom.
Etiology is another word for cause. Syndrome is merely a collection of symptoms.
As an example, let's consider pneumonia. Pneumonia is a syndrome — a set of specific symptoms. The symptoms comprising the syndrome can include fever, cough, chest pain, and fatigue. Pneumonia is not an etiology, or cause. A common etiology of pneumonia is infection with the pneumococcal virus, for example. But aspiration of food can also cause pneumonia. The physiologic consequence is fluid in the lungs.
Similarly, dementia is merely a syndrome, a collection of symptoms, and not an etiology. Dementia symptoms include decline in thinking and/or memory ability, sometimes referred to as cognitive impairment. Dementia symptoms also include a change in one's ability to function independently.
Mild cognitive impairment is also a syndrome. It shares the cognitive impairments of dementia, but not the loss of independent function. All of the etiologies that can cause dementia also cause mild cognitive impairment including Alzheimer's, Lewy Body disease and stroke. The common physiologic consequences of these diseases are brain cell death resulting in brain atrophy.
When a family and patient are meeting with a healthcare provider to receive an understandable diagnosis for the symptom of memory loss, it's within their rights to ask if the diagnosis they are given describes an etiology, a syndrome, or a symptom. In other words, if the diagnosis given is merely brain atrophy, mild cognitive impairment or dementia, it's reasonable to ask what the likely cause (etiology) is. But that takes being brave enough to possibly hear the "A" word.
The reader's inquiry underscores however, both the complexity and the challenges families still face in obtaining a timely, accurate, and understandable diagnosis. Recently, the federal government released a National Plan to Address Alzheimer's disease. This large step forward enumerates the following 5 key strategies in our efforts to address the profound impact of Alzheimer's disease:
- Prevent and effectively treat Alzheimer's disease by 2025.
- Optimize care quality and efficiency.
- Expand supports for people with Alzheimer's disease and their families.
- Enhance public awareness and engagement.
- Track progress and drive improvement.
An action under the second key strategy (optimize care quality and efficiency) is to ensure timely and accurate diagnosis. Clearly, it's not just this blog reader who left the doctor's office with unanswered questions and uncertainly. This is happening far too often. Health care providers, as well as persons with memory changes and their families need to be educated and empowered to seek and receive an early and clear diagnosis."
Although there isn't a cure for Alzheimer's or the related dementias such as Lewy Body disease, there is empowerment in clearly naming the disease. Once this takes place, persons with the disease and their families can fully understand and better accept the changes that have been occurring.
A clear diagnosis offers the patient and family precious time to arm themselves with knowledge, seek supportive services and programs, prepare thoughtfully for the future, and take advantage of existing strengths. Early diagnosis allows for the possibility that cognitive changes can be delayed, and symptoms such as depression can be identified and treated.
For many, the secret to navigating this journey lies in knowing — and this may be the first step towards living life fully (again).
To see the National Plan to Address Alzheimer's Document go to http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf.
June 12, 2012