Patient-Provider Communication About Dementia Left Wanting

Social stigma is getting in the way of patient-provider communication about Alzheimer’s and other dementias, but there’s a way around that, according to researchers from the Regenstrief Institute.

In a literature review published in BMC Primary Care, the team found that there’s little discourse about the communication strategies primary care providers can use to discuss cognitive health and/or decline with patients. Opening up that discourse could lead to more patient-provider communication on the matter, which Regenstrief scientists said would be a good thing for outcomes.

“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,” Malaz Boustani, MD, MPH, a Regenstrief Institute and Indiana University School of Medicine research scientist, said in a statement. “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?”

Having discussions about cognitive health and, by extension, Alzheimer’s and other dementias should be commonplace, but in a literature review of 22 articles and 19 studies, the team found that both patients and providers are reticent to have these discussions. This is largely related to the social stigma tied to Alzheimer’s and related cognitive health issues, plus some time and reimbursement constraints on providers’ ends.

Discussing cognitive decline can be uncomfortable and scary for both patients and providers, Boustani said, in the same way that discussing other illnesses has been in the past.

“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,” according to Boustani, who is a 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.”

There are some patient-provider communication techniques and other interventions that can help circumvent these barriers, but Boustani and the team found that they are not often discussed and, therefore, hardly used.

Two such models give tips for how providers can initiate conversations about cognitive health with patients.

The Kickstart, Assess, Evaluate, and Refer (KAER) model from the Gerontological Society of America suggests providers start discussing cognitive health in initial patient visits, ask patients about their memory, and make these discussions routine.

Meanwhile, the BOLD Public Health Center for Excellence on Early Detection of Dementia (EDD) toolkit stresses the importance of patient trust, the use of positive framing to reduce stigmatization of cognitive health, and simple patient education that considers patient health literacy.

There are also ways healthcare organizations can make patients more comfortable starting conversations about cognitive health on their own, something the literature review indicated patients are reticent to do. Using the Agile Diffusion Process, organizations can begin with a nudge, like a poster in the waiting room about cognitive health.

The second half of the Agile Diffusion Process, the “market demand” means creating a need for a process or solution before rollout.

Finally, the Regenstrief researchers emphasized the importance of cultural competence while discussing cognitive health. One study included in the literature review showed that a nurse-led, faith-based group education program was effective within a predominantly Black community. Assessing other culturally tailored programming could help close the discussion gap, the researchers indicated.

“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,” Boustani concluded. “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.”