Listening is Key in New Alzheimer’s Study
While we know Alzheimer's is a disease of aging, there are other factors that increase our risk for this condition. As the prevalence of Alzheimer's rises from an estimated 5.5 million people in the U.S. to as high as 16 million in 2050, researchers are looking at how the disease affects different populations.
For John Lucas, Ph.D., a neuropsychologist on Mayo Clinic's campus in Florida, the population he's most engaged with is the African-American community. African-Americans have twice the risk of whites for developing Alzheimer’s. They also tend to undergo evaluations for memory loss at a later stage in the disease process than other ethnic groups.
The delay means patients’ dementia may be significant by the time they and their care-partners seek help. Forgetfulness can also impinge on their attention to any other medical conditions, making their health worse overall.
To provide critical advances in patient care for African-Americans, Dr. Lucas is using funding awarded to Mayo Clinic from the Ed and Ethel Moore Alzheimer’s Disease Research Award to engage one local African-American community in addressing dementia.
“Our goal is to explore an innovative model for raising awareness and providing sustained education and support, both for patients and for those who are providing care for their loved ones with dementia,” he says.
The study represents an important step, not only in improving the unmet needs of Alzheimer’s patients in regard to medical care but also in bridge-building between African-Americans and the health care field.
“There’s an unfortunate history in the United States of unequal treatment in medical settings for African-Americans,” says Dr. Lucas. “People tend to be reluctant to go and be evaluated for dementia. Because of historical abuses in medical research, they may also be reluctant to participate in studies that might help find better ways of managing and treating the disease.”
The study will focus on New Town in Jacksonville, Florida. The early stages will involve creating focus groups comprised of patients and care-givers, community groups (such as faith groups and local businesses), and community members not affected by Alzheimer’s (such as neighbors or school groups). The focus groups will help identify the best aspects of Alzheimer’s education and support currently available in the neighborhood, as well as opportunities for improvement.
Mayo Clinic team members will then work together with neighborhood volunteers to plan, develop and implement Alzheimer’s outreach efforts chosen by the community.
“Our intent is not just to come in, ask questions, and go back to Mayo. We’ll stay and work with community members as partners, but our role is to listen to them about what they want and what they feel their community needs,” he says.
The second part of the study will evaluate the impact of this partnership on community Alzheimer’s awareness and quality of life of those directly affected by Alzheimer’s disease.
“Our hope is that this collaborative program, guided by community self-assessment and self-direction, will be more impactful and have a more sustained benefit than the traditional outreach model of raising Alzheimer’s awareness through community lectures and presentations,” says Dr. Lucas.
The study builds on Dr. Lucas’ previous research in health care disparities, which identified and corrected racial disparities in cognitive testing for dementia.
The following Mayo researchers also received funding from this year’s Ed and Ethel Moore Alzheimer’s Research Award:
---Melissa Murray, Ph.D., "Quantitative neuropathology and biochemistry of survival differences in Hispanic Americans with Alzheimer's disease"
---Chia-Chen Liu, Ph.D., "Impact of TREM2 variants on microglial function and Alzheimer's disease pathology"
---Heather Melrose, Ph.D., "Targeting Lrrk2 activity to modulate tau pathology"
---Mark Ebbert, Ph.D., "Identifying drug targets using long-read sequencing in Alzheimer's disease and control brain tissue"
To read more about Mayo Clinic’s efforts to address health disparities through research, visit the Office of Health Disparities Research blog.
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