For Dr. Stephanie Johnson, a black neuro-psychologist and founder of The International Dementia Research Foundation, her passion for helping African-American women cope with Alzheimer’s disease is personal. Johnson’s mother, who is 64, was diagnosed with Alzheimer’s in 2008, and Johnson’s 81-year-old grandmother also has dementia.

“Dementia is such a devastating disease for African-Americans and people of color, and it’s having a severe impact on our community,” Johnson, who is also a clinical researcher, told BlackAmericaWeb.com. “We need to have more discussions about dementia and educate the African-American community.”    

Johnson’s International Dementia Research Foundation (IDRF) is a private non-profit foundation based in Washington, D.C. and seeks to address issues of Alzheimer’s disease and related dementias in ethnic minorities and women by encouraging the development of culturally sensitive treatments.

Johnson said it’s critical that African-Americans get diagnosed early in order to get the necessary treatment to fight the disease because blacks have a much higher rate of dementia than whites. She said more and more individuals will face either having to care for someone with the disease or succumbing to it themselves in the years ahead.

Part of her calling, Johnson said, is to help African-American seniors get access to information about Alzheimer’s disease because many do not have access to computers and the Internet.

She is not alone. The federal government has also recognized the importance of education about Alzheimer's disease, and President Barack Obama proclaimed October as Alzheimer's Disease Awareness Month. 

"The physical and emotional demands of caring for a loved one with Alzheimer's can be overwhelming, but no one should face this disease alone," Obama said. "During National Alzheimer's Disease Awareness Month, we recognize all those living with Alzheimer's disease and honor the caregivers, including families and friends, who support them. We also renew our commitment to research that is improving treatments for this illness and may one day prevent it entirely."

Johnson, who opened her private practice in October, is both a clinical and research neuro-psychologist and is currently the director of the Office of Applied Psychological Science for the American Psychological Association.

She received extensive training in the area of differential diagnosis of Alzheimer’s disease and related dementias while completing a post-doctoral fellowship at the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center at Duke University Medical Center. 

As the first African-American to complete a post-doctoral fellowship at the center, Johnson spent her time conducting clinical research on the behavioral and genetic correlates of Alzheimer’s disease.

In addition to her clinical duties at Bryan ADRC, Johnson developed a unique research program, which explored the role of depression and environmental stress in African-Americans diagnosed with Alzheimer’s. The program was developed to improve clinical diagnosis and increase access to mental health care in elderly African-Americans. 

According to the Alzheimer’s Association:

- African-Americans may have a higher risk for diabetes, a disease with a strong connection to Alzheimer’s, vascular dementia and stroke.
 
- High blood pressure is more common among African-Americans. HBP is a risk factor for stroke, which can lead to a greater risk for developing Alzheimer’s.

- Having high cholesterol increases the risk for stroke, and may increase the risk for Alzheimer’s.

- African-Americans may have a higher rate of vascular (stroke-related) dementia.

The number of African-Americans entering the age of Alzheimer risk (age 65 or older) is expected to more than double to 6.9 million by 2030.

Johnson said she is one of only about 50 African-American doctors in the United States specializing in Alzheimer’s and other forms of dementia.

Today, medical experts say more than five million Americans suffer from dementia. An estimated 10 million African-Americans may have severe dementia by the year 2040.

“As a nation,” Johnson said, “we need to talk more about dementia like we talk about heart disease and other serious illnesses.”

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