Overcoming stigma to start early conversations about cognitive decline

Regenstrief InstituteJan 30 2024

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. 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."

Dr. Malaz Boustani, senior author of the study

"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."