Home Editorials For Black people memory loss costs more than memories

For Black people memory loss costs more than memories

by PRIDE Newsdesk

My mother, Miss Grace in her neighborhood, wanted to be a centenarian. She often talked about how she wanted to live to be 100 years old. Perhaps it was because as the oldest of nine children, only she and one sister lived past age sixty. Maybe it was because she knew how much her family and community needed her. As a mother figure to many, she was empowered by providing what others needed. Be it a hot meal, a place to rest, a prayer, counsel, a shared laugh, or a hug—people came to her when they were in need. Having lived 50 years in the same house, her parenting and her service extended far beyond the confines of her family.

At the age of 70, my mother had survived everything. She survived coming of age in the Mississippi Delta. She survived Jim Crow, raising a family in poverty, and periods of deep depression. She survived a major car accident at age 40, the loss of her husband at age 47. She survived the loss of a child at age 63 and a heart attack at age 66. All things considered, she arrived at 70 happy and healthy with a strong desire to live a very, very long life. I believed grit and desire alone would allow her to reach that wish for a 100th birthday, and then unexpectedly came Alzheimer’s disease.

Alzheimer’s disease is the most common form of dementia.    Dementia is a general termfor changes in memory, thinking and reasoning that get worse over time. African Americans make up only 13% of the United States population. We represent 20% of all individuals with Alzheimer’s. We are two times more likely to get the disease than Non-Hispanic Whites. While we have the personal loss of our loved ones, we also carry 33% of the nation’s cost for the disease. This cost is not just for healthcare. The cost also includes lost income, lost assets, and millions of dollars in unpaid care provided by family members.

Growing older does not have to mean the loss of passion and purpose. It can be a time when the summary of your life’s work and wisdom comes together, enriching your life and the life of others. Alzheimer’s disease is taking elders like my mother, just as they reach this important time in the human experience. Losing them is a huge loss, especially for Black communities. Our elders are the cornerstone of our families and our neighborhoods – they are the “keepers of the flame” for our unique, Black experience.

As a community we are misinformed that Alzheimer’s disease is a normal part of getting older. It is not. Racism in medical care puts us at risk of not getting the right evaluation for memory loss putting us at higher risk for a misdiagnosis or a late diagnosis. For Black folks, Alzheimer’s is a crisis. We need to learn more about our risks and advocate for quality, timely, and appropriate care for ourselves and our family members.

Over the past twenty years, knowledge gained through research has included less than 1% African American participation. That means that the very people most affected by Alzheimer’s disease are not represented in research findings and outcomes.

Some research is funded with federal dollars, these programs are required to include people of color in their studies. Today, research teams are more diverse. Researchers are better trained in working with diverse communities. Participants have more control of how they wish to participate. Participants also have greater protections.

To change our experience with Alzheimer’s we need all efforts. Researchers cannot know if new treatments or possible cures will work for us, without our input.

Our involvement in research and prevention is required to close this health gap. Our families must begin to have a conversation about the early signs and symptoms of memory loss. We must also do our best to reduce our risks throughout life. We can do so by:

  • Challenging our brains
  • Managing our heart health and blood pressure
  • Staying physically active
  • Staying socially engaged
  • Maintaining a healthy weight
  • Not smoking
  • Getting good quality sleep
  • Using alcohol only in moderation

The hour is upon us, and it calls for our response. We can stop Alzheimer’s from rewriting our stories.  We can fully live our lives sharing our wisdom and becoming all God has intended us to be. We must first find the motivation to raise our awareness. We must then do the things we need to do to protect ourselves. We can also step into the future and leave a legacy for our children and our children’s children. We can actively participate in finding treatments for Alzheimer’s disease that work for all people.

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