African Americans and Alzheimer’s: What You Need to Know
Did you know that African Americans are twice as likely to get diagnosed with Alzheimer’s as their non-Hispanic Caucasian counterparts?
This startling statistic is what drives the research work of Dr. Goldie Byrd, the Nathan F. Simms Endowed Professor of Biology at North Carolina A&T University and the Director of the Center for Outreach in Alzheimer’s Aging and Community Health. Dr. Byrd’s extensive research into Alzheimer’s disease has been recognized both nationally and internationally by the Alzheimer’s Association and by the National Black College Hall of Fame. Her cross-disciplinary research has generated over $37 million in external support at A&T.
In her work, Dr. Byrd particularly focuses on trying to better understand how Alzheimer’s affects the African American community. That’s why this month, for Black History Month, WAM has connected with Dr. Byrd to share her insights with you and provide further information about this important issue.
1. African Americans are twice as likely to get Alzheimer’s as their non-Hispanic Caucasian counterparts. Through your research, what are you learning about why this is the case?
While there are genetic differences in the way some genes are expressed, other factors are also important. Education, health conditions such as diabetes, hypertension, and cardiovascular disease, as well as prevalence of vascular disease are thought to be major contributors to differences in risk. In addition, differences in socioeconomic and environmental factors such as lower education, poverty, access to health care, nutrition, and adverse early life events, including discrimination, are thought to influence risk.
2. What do we know about the role that genetics play in this increased risk?
It has been established that Alzheimer’s disease, particularly early onset, runs in families. Persons who have first degree relatives with disease, have a higher risk for getting it. This lends credence to a major role for genetics, but the extent of that role is still being investigated in late onset Alzheimer’s disease. The Center for Outreach in Alzheimer’s, Aging and Community Health (COAACH), is part of a larger group of researchers involved in Alzheimer’s disease genetics research. We have found differences in the expression of several genes that are associated with increased prevalence of Alzheimer’s disease.
3. There seems to be a real lack of awareness of this important issue. What do you think has led to this disconnect, and what do you think we can do as a society to raise greater awareness of this issue?
Intentionality around raising awareness has not been enough of a priority. Lack of knowledge, the misconception that Alzheimer’s disease is a normal part of aging, and cultural differences in managing the disease have contributed to the disconnect. There remains a stigma attached to the disease, particularly in many minority communities, that prevents conversations from occurring. Education, advocacy, community outreach for the masses, such as the ones we offer at COAACH are examples of initiatives that can help to raise greater awareness. Increasing awareness and literacy around the disease, its management and care should be priority among health providers, researchers, and health educators. With regard to the genetics disconnect, I believe that including genetic concepts in Alzheimer’s education and awareness initiatives is a great strategy to begin to address the disconnect.
If you were talking about the genetic awareness disconnect: Many people are often leery of the word “genetics”, for obvious reasons, including its misuse to mischaracterize and label individuals, particularly people of color. Others might not have had a good learning experience with genetics and feel that understanding genetics is too difficult. All professionals who work with Alzheimer’s families should have opportunities to learn and educate others, at grade appropriate levels, about the role of genetics in increasing risks to Alzheimer’s disease. Conversations might begin at local organizations such as community town hall meetings, family reunions, or faith organizations, discussing family histories of disease or family trees. In addition, researchers and clinicians might also find ways to introduce genetics discussions or short modules in their clinics or on websites. What is very critical is that individuals are introduced to the topic in ways that they best understand.
4. To an African American who says “how can I help?” what would you say? Should they get involved in a clinical trial, or are there also other steps you’d recommend as well?
I would recommend that African Americans, as well as other underserved populations, become as knowledgeable about the disease as possible. Get involved, be an advocate at your local and state level, participate in walks, plan or attend community events, workshops, symposia or support groups to learn about AD. Since African Americans are so underrepresented in research studies and clinical trials, I would encourage them to seek opportunities to participate to assure that all populations benefit as new knowledge is generated and new therapies are found to mitigate this dreadful disease.
5. What gives you hope moving forward as an Alzheimer’s researcher?
Many things give me hope as an Alzheimer’s researcher. I am very excited about the monumental strides in research and interventions around the globe. The increased attention and funding for research and care management, from private organizations as well as public organizations in recent years, give me hope.
In addition, while there is much room for improvement, I am hopeful that research studies and clinical trials will improve opportunities for health access and health improvement for all people. I am equally excited that increasingly, there are serious national and international efforts to reduce stigma and improve literacy, access to care, and study involvement among diverse populations.
6. For anyone who wants to better understand this issue, where do you recommend they go to learn more?
To understand more about Alzheimer’s disease in general, one might begin with his/her primary care physician to find information. One might also begin conversations with the local health department, local chapter of the Alzheimer’s Association or Area Agency on Aging.
To learn more about clinical trials or research studies, the Alzheimer’s Association has a Trial Match program. Some states have Alzheimer’s and dementia registries. In addition, local universities and research or teaching hospitals have many research studies and clinical trials.
Participating in a study or trial is an important opportunity for all races and ethnicities. It is also very important that participants are made fully aware of benefits, expectations, limitations and rights associated with the study or trial.
More Stories from Our Caregiving Community
By Dave Singleton If you could use some reminders about the positive sides of this often-challenging role, consider these 10 rewarding (and sometimes surprising) aspects of caregiving. 1. Caregiving Gives You a Sense of Purpose When the veils are ripped back, we often...read more