By Ana Martinez-Ortiz
Health equity needs to apply to every aspect of health. From the start of someone’s life to the end, everyone deserves the right to be healthy and live a healthy lifestyle. Eliminating health disparities is especially critical when pertaining to diseases such as cancer or dementia.
Earlier this week, the Alzheimer’s Association released its 2021 Alzheimer’s Disease Facts and Figures report. The report examines the latest statistics and information when it comes to disease prevalence, mortality rates, cost of care and more. This year, the association surveyed communities of color regarding their experience when it comes to Alzheimer’s and dementia care.
The findings were published in a special report called “Race, Ethnicity and Alzheimer’s in America” and were based on two nationwide surveys. The reported found that 50% of Black Americans have experienced health care discrimination with Native Americans, Asian Americans and Hispanic Americans reporting similar experiences.
Furthermore, it found that Native Americans, Blacks, Hispanics and Asian Americans say it is important, “for Alzheimer’s and dementia care providers to understand their ethnic or racial background and experiences,” but many lack the confidence in providers to be culturally competent.
The publication of this report shows that the Alzheimer’s Association is making an intentional effort to address disparities in care concerning Alzheimer’s and dementia.
“We already know that communities of color are disproportionately affected by not only Alzheimer’s but just by health disparities overall,” Gina Green-Harris said in an interview.
“It is our duty to address these disparities in an earnest and intentional way. And I think having the courage to put this report out is very inspiring because it means we want to do something about it. We’re not hiding behind the numbers anymore. We’re putting them out there for the purpose of change.”
Green-Harris is director of the University of Wisconsin Center for Community Engagement and Health Partnerships in Milwaukee, Wisconsin Alzheimer’s Institute, Regional Milwaukee Office and Alzheimer’s Association Wisconsin Chapter board member.
There are huge disparities in the types of care that people receive, Green-Harris said. Care providers themselves, the level of care provided, the consistency of good care, how communities of color are perceived and access to resources are some of the challenges that Black and brown communities face regarding health care.
When it comes to Alzheimer’s disease or dementia, every individual’s journey with the disease is going to be different, Green-Harris said. It’s not a cookie cutter disease, she said.
With that in mind, the association strives to meet families where they’re at.
“Their experience on this journey can be very different because the disease itself is different,” she said. “It impacts people as individuals not as this group cohort. And I think what’s important about meeting people where they are is that everyone comes into the door in a different time, in a different place.”
That’s relevant to know, because the association strives to get people the best possible care, support and resources, she said. It requires people such as Green-Harris to be flexible and nimble when it comes to encountering families dealing with disease. It also makes them well suited to be a front runner when it comes to addressing discrimination and health inequities.
The Alzheimer’s Association was well intended, Green-Harris said. It didn’t intentionally discriminate communities, but like many organizations it did the traditional work which didn’t focus on the need to do things differently when it comes to addressing the unique set of needs present in Black and brown communities.
“I would argue that right now the Alzheimer’s Association like so many other organizations has had a revelation and an understanding based on the data,” Green-Harris said.
“When we look at the data, the data don’t lie.”
The data shows that white people are being served on a more regular basis, she explained, and it’s a sign that it’s time to be intentional.
“We are moving toward more intentionality around making sure that we are being as inclusive as possible,” Green-Harris said.
These efforts require having the right team in place, new programming, new leadership and new intentionality to serve all of the community. Green-Harris
said one of the biggest challenges is the lack of genuine and collaborative efforts with communities of color.
She continued that it’s about meeting people where they are, taking the time to better understand historical trauma, apologizing where necessary, hiring competent staff that has cultural humility and hiring staff that looks like the people the association is trying to serve. Having a doctor that looks like the patient is important too, she said.
Diversity is needed on all levels of an organization or corporation, she said.
It’s equally important that the association recognize that it can’t do the work alone. It needs partners who are stakeholders in the community to help establish relationships and it needs other organizations to do the work.
While the challenges the association and organizations like it are no small feat, Green-Harris is hopeful.
People are having honest, transparent conversations about racism, actions are being taken to address systemic racism and dismantle it, groups are looking in the mirror and taking actionable steps to do better going forward, she said.
“If we don’t have hope, we can’t do the work,” she said. “Because hope gives us new ideas, hope gives us new perspectives, hope helps us look in the mirrors at ourselves and say, ‘Hey wait a minute we have to move the dime on this what do we need to do differently.’ That’s why hope is so critical to me.”