September 21 is World Alzheimer’s Day, an international campaign to raise awareness about the impact of this disease. It’s also an opportunity to explore how to overcome the cultural stigma about dementia that can prevent patients and families from seeking timely medical attention.

Anyone who’s ever loved someone with Alzheimer’s disease (AD) knows the heartache of watching them disappear into this disease. Currently around 50 million people are living with Alzheimer’s worldwide, 60% of whom live in low- and middle-income countries. And the number climbs daily, with 10 million new cases added every year.

It’s a global healthcare crisis that has yet to be abated. Despite decades of research, Alzheimer’s disease is a leading cause of death in the United States. Recent estimates indicate the disease has become the third most common cause of death among older Americans.

Although the FDA recently granted Accelerated Approval to ADUHELM™, the first disease-modifying therapy for AD earlier this year, the participants in pivotal trials for this and other potential interventions have not reflected the diversity of global AD patient populations.

Despite these setbacks, the Alzheimer’s disease research community is hopeful about the future, and eager to make progress. The confirmatory trials required by the FDA for ADUHELM™ will make special efforts to enhance diverse recruitment of participants. A crucial part of this journey requires that the industry tackle many of the cultural obstacles that prevent patients from getting diagnosed or considering participation in clinical trials.

Stigma and access

Health disparities among different racial groups impacted by AD add complexity to researching this disease. While the disease impacts all types of people, black Americans are twice as likely as non-Hispanic whites to develop Alzheimer’s; Latinos are 1.5 times as likely. Poor access to care and low health literacy within some communities of color contribute to low diagnosis rates, and cultural norms may prevent individuals or families to speak up about early signs of the disease.

For instance, among Asian groups, admission of dementia symptoms may cast suspicion on an elder’s children, who would face blame for neglecting their parents and thereby causing the dementia. This stigma can prevent families from pursuing a diagnosis or care, and it can isolate caregivers who shun support groups, education and services that might otherwise ease their burden.

It’s critical for researchers to understand the cultural and systemic dynamics contributing to these disparities. The same reasons that prevent patients from seeking diagnosis will prevent their participation in clinical trials. Without diverse participation, clinical trial results may not be generalizable to wider populations. Diversity goals for trial populations consistently go unmet in clinical research. Alzheimer’s disease trial recruitment typically misses matching representative minority recruitment in the US by 50% or more.

To overcome these barriers, Alzheimer’s disease researchers need to be more creative in their patient outreach efforts — starting sooner and customizing their methods and engagements to appeal to different communities.

Consider Karen Lincoln’s BrainWorks Project, a comparative effectiveness trial to test the impact of culturally tailored interventions on AD literacy among African Americans. The trial provided a culturally tailored, 60-minute talk show and provided standard printed educational materials on Alzheimer’s to all participants. Then one group received an additional month of culturally tailored, daily text-messages; a second group received daily text messages based on the printed educational materials that the general public would receive; and a third group received no additional outreach.

After one month, Lincoln’s team found participants who received culturally tailored text messages had the highest increase in AD literacy levels, and that they saw a significantly greater increase in AD literacy levels compared with those who attended the live event only. It demonstrates the power of culturally specific outreach, and custom communication through a nearly universally accessible medium to improve AD literacy.

Life sciences companies can also create ongoing partnerships with local influencers to provide disease education and share research opportunities, looking beyond traditional healthcare centers to find them. Engaging in these activities prior to recruiting can help pharma companies establish trust among the patients they want to attract, but they must be mutually beneficial. If pharma wants the support of these influencers, they need to demonstrate what benefits they deliver to the community, in terms of health literacy, financial support, and localized care.

While physicians continue to be the most trusted source of information about clinical research, life sciences companies can also leverage direct-to-patient outreach campaigns, that work with clergy, politicians, and local celebrities to craft tailored education and messaging that addresses the unique needs of the target patient population and their families. With Alzheimer’s disease, it’s likely that loved ones will be the first to detect a diagnosis and will play a key role in deciding whether to participate in clinical research. Acknowledging that role and providing education and support specific tailored to their needs can help eliminate barriers that might otherwise cause them to decline.

We cannot tackle this disease without strong collaboration among researchers and patient communities. Creating avenues for industry to listen to patients – especially communities of color who are disproportionately impacted by dementia – is an important step in taking a more holistic, partnered approach to patient recruitment and engagement. Those actions will help ensure that all communities benefit from opportunities to participate in clinical research, and that the treatments that ultimately emerge will have been validated for a diverse set of patients.