Words do matter. When we as genetic counselors use the terms “psychiatric disorder” or “neurodegenerative disease,” there are usually negative connotations — feelings of hopelessness and disability built in. Patients may say with a sigh, “This day will be as good as it ever gets,” as they contemplate their future. Even the terms we use to try to empower them such as “mental health” can feel weary to some individuals who are struggling with their disease or potential risk for disease. The word “mental,” in and of itself, has evolved to mean “mad” or “crazy” when used as slang. The term “prevention” that we like to pull out of our genetic counselors’ toolkits, when used alone, can sound like a hard pill to swallow— and can sound, well, downright boring.
I have asked myself how I can do better as a counselor but especially sound better, since words are powerful and can draw in a person or push them away. Our IU team of genetic counselors provides results disclosure and post-test genetic counseling to research participants with Parkinson's disease or at risk. We dance around risk and ambiguity in each session. We handle tough questions and often struggle with how to say things. To enhance our sessions, we have adapted the risk jar developed for the psychiatric genetics setting to use as a visual aid. And, as recommended by the original authors; when using this aid, we talk about how to add protective rims to the jar to avoid or minimize the effects of disease, in this case Parkinson's.
I love to purposefully use the term “brain health” with participants and compare this to how we think about heart health, a more familiar concept. I discuss protective measures for this disorder that we are finding has a long prodromal phase, which can be targeted for intervention. It is not uncommon for them to have other disorders, such as depression, for which this approach can be beneficial. It is my impression that just a slight shift in the disease terminology used can feel different to participants by placing the issue(s) at hand firmly in the domain of a medical disorder for which there can be action such as leveraging exercise or staying engaged socially. In other words, it is more than having grit, “pulling up your bootstraps,” or accepting the status quo. There is another option — a path of medical action.
Imagine how excited I was to see a recent article published in the journal Neurology endorsing preventative neurology and the training of professionals in this area. The authors describe this emerging field that attempts to showcase brain health and the steps that can be undertaken before disease begins sub clinically. They discuss strategies to promote brain health both at both the public and individual level. I wholeheartedly agree with them and am thinking about how we can translate this powerful idea to the genetic counseling we do in neurology, psychiatry and other related fields. How do we move away from the notion of brain disease and its various forms to a more positive space that can inspire people: namely brain health and the actionable steps to encourage growth? I propose it starts with the very words we use to describe disease and prevention, as well as the attitude we assume when counseling.
Gene discoveries and the identification of biomarkers in asymptomatic individuals are creating new proactive strategies in the neurology field. This idea of preventative neurology will require better risk assessment and stratification of individuals who can be targeted for intervention. Fortunately, this is a skill set we already possess as genetic counselors, and we can position ourselves within the research and clinical realms to help in these endeavors. From a critical standpoint, more evidence-based data are needed for the important education that can be provided to patients, participants and their caregivers. This discussion, based on current knowledge, may include modifications to lifestyle that involve diet, exercise, environmental exposures and cardiovascular risks. Many of these measures can be simple ones to take, another important consideration in discussing protective steps with individuals who may feel overwhelmed.
The authors in this new paper touting neurology prevention mention the American Heart Association's Life Simple Seven as a model for patient education. Recently, I have encountered similar models developed specifically for neurologic disorders such as the Six Pillars of Brain Health from the Cleveland Clinic. In Parkinson’s disease, there is a renewed and burgeoning interest in lifestyle changes such as physical exercise both for treatment and prevention. I am hopeful that there will be more models, effective interventions and training to help promote brain health and minimize disease. It seems that providers are beginning to recognize the need to reframe how we talk about brain disease as we seek to encourage individuals to live their best lives, taking action where they can.