Overcoming the stigma: study recommends steps to move past barriers of brain health conversation

INDIANAPOLIS — Approximately four of five primary care clinicians consider themselves on the front lines of brain health. In the U.S., clinicians are the first point of contact for patients worried about memory loss and are most likely the first to detect and evaluate patients experiencing mild cognitive impairment, Alzheimer’s disease or related dementias.

In a new study focused on understanding the barriers of clinician-patient conversations about brain health and cognitive concerns, Regenstrief Institute and Indiana University School of Medicine Research Scientist Malaz Boustani, M.D., MPH, found that early conversations about brain health between clinicians and their patients are rare due to the stigma around an Alzheimer’s disease or related dementia diagnosis.

“Similar to the HIV/AIDS epidemic in the 1980s or the public fear of cancer in the 1970s, Alzheimer’s disease and related dementia diagnoses are stigmatized,” said Dr. Boustani, senior author of the study. “We are looking at past stigmas and how we can leverage the current day information technology opportunity to develop tools, processes and strategies to create a demand for the brain health conversation in primary care and destigmatize the Alzheimer’s disease and related dementia diagnosis.

“The stigma around Alzheimer’s disease and related dementias creates a barrier between clinicians and patients causing the lack of conversation about brain health or cognitive concerns. To create the necessary and potentially effective tools, processes and strategies, we must move past the stigma that surrounds having a brain health or cognitive concern conversation,” said Dr. Boustani.

Findings from the study also revealed that:

• both clinicians and patients are hesitant to initiate these conversations,
• evidence to inform brain health interventions is often poorly communicated and
• social and cultural factors impact clinical engagement between primary care clinicians and their patients.

The study suggests that when cognitive impairment is suspected, the language and approach to the conversation between physician and patient for brain health or a cognitive concern should be tailored to the patient’s social and cultural context.

For example, a nurse-led, faith-based, culturally tailored educational program about Alzheimer’s disease, related dementia and early detection has generally been positively received by members of the Black community. Although this education is provided in a group setting instead of in an individual encounter, the culturally relevant messaging developed as part of these programs can serve as a guide to have a brain health conversation for physicians. This point is particularly important given how stigma and sociocultural differences can negatively impact health-seeking behaviors related to cognitive concerns and discourage inclusion in clinical research and advances in clinical care.

“Having a conversation about your brain health when you go and see your provider, who is responsible for your health overall, should be a normal occurrence,” said Dr. Boustani. “Why would you have a conversation about your kidney or liver, your heart, your lung, your muscle, your bone and not have the conversation about your brain, which is the most prestigious or precious organ and the one that you don’t have a chance to regain if you lose it?”

The researchers also identified the Agile Diffusion Process, which provides a framework for facilitating the rapid uptake and diffusion of evidence-based solutions, as an alternative approach for physicians engaging with their patients.

The Agile Diffusion Process has two concepts. The first being the “nudge,” which refers to a small change in environment that can positively influence individuals’ behaviors and choices. An example of a “nudge” could be a simple and easily implemented poster on a clinic wall encouraging patients to ask questions about their cognition.

The second concept is referred to as “market demand.” This component of the approach is the idea of market demand for an evidence-based intervention prior to rollout and scale-up within an organization.  An example is the sudden increase in the demand for telehealth in 2020 very early on in the COVID-19 pandemic. In less than a week, telehealth usage went from less than 5% to more than 90%.

Dr. Boustani recommends considering the agile processes and concepts when looking to implement early conversations about cognition at the practice or system level.

“Clinicians can play a vital role in making early conversations around brain health and cognitive concerns as part of routine healthcare long before symptoms appear,” said Dr. Boustani. “It’s so important for us to have a brain health conversation with our clinician. We need clinicians to have the brain health conversation become routine, because, at the end of the day, there is no health without brain health.”

“Understanding barriers to and facilitators of clinician-patient conversations about brain health and cognitive concerns in primary care: a systematic review and practical considerations for the clinician,” is published in BMC Primary Care.

Authors and Affiliations as listed in the publication.

Soo Borson^1,2, Gary W Small ³, Quentin O’Brien^4,5, Andrea Morrello ⁴, Malaz Boustani ⁶.

Affiliations

• ¹Department of Family Medicine, Keck School of Medicine, University of Southern California, 31 E. MacArthur Crescent B414, Santa Ana, Los Angeles, CA, USA. [email protected].
• ²Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, WA, USA. [email protected].
• ³Department of Psychiatry and Behavioral Health, Hackensack Meridian School of Medicine, Hackensack, NJ, USA.
• ⁴Scientific and Medical Services, Health & Wellness Partners, LLC, Upper Saddle River, NJ, USA.
• ⁵The School of Medicine and Health Sciences, George Washington University, Washington, DC, USA.
• ⁶Division of General Internal Medicine and Geriatrics, Indiana University School of Medicine, Indianapolis, IN, USA.

Malaz Boustani, M.D., MPH 

In addition to his role as a research scientist with the Indiana University Center for Aging Research at Regenstrief Institute, Malaz Boustani, M.D., MPH, is the founding director of the Center for Health Innovation and Implementation Science. He is a professor and the Richard M. Fairbanks Chair of Aging Research at Indiana University School of Medicine. Dr. Boustani is also director of care innovation at Eskenazi Health.

About Regenstrief Institute  

Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform clinical practice and improve the lives of patients around the globe. 

Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.

About IU School of Medicine

IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.