Black Family Caregiver continues to share her story to help other caregivers open up
Gloria Brown’s husband Arthur was diagnosed with Alzheimer’s in 2015. She cared for her husband for six years until he passed in 2021. She first shared her story with us in 2019. Since then, Gloria has become an advocate for people living with dementia. She uses her voice not only to help get funding for Alzheimer’s research and treatment but also for first responders to receive better training when it comes to people who are living with dementia.
Telling others about the diagnosis
According to Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report, African Americans are twice as likely to have Alzheimer’s or another dementia. Sixty-five percent of Black Americans say that they know somebody with Alzheimer’s or dementia.
When Arthur was diagnosed, Gloria new there would be a lot of changes. Gloria and her family focused on what they could do instead of what they couldn’t. She shares what their next steps were as a family and how important it is to share the diagnosis with others.
Choosing a physician
Eighty-nine percent of Black Americans say it is important for Alzheimer’s and dementia care
providers to understand their ethnic or racial background and experiences. Only 48% of Blacks report being confident they can access culturally competent care. While Arthur’s doctor was not Black, Gloria and Arthur felt their doctor understood their cultural needs throughout Arthur’s dementia journey.
Changes in behaviors
After Arthur’s diagnosis, many of their friends would talk with Arthur on the phone and to them, there didn’t seem to be any changes in his memory. It wasn’t until they spent time with him that they were able to see the signs.
Arthur was able to remember things from his past, like a song he used to sing when he was in a fraternity. However, he would forget that you need to pay for items in a grocery store and that it isn’t acceptable to take home the straws and cloth napkins from a restaurant.
Gloria highlights the usefulness of Alzheimer’s Association courtesy cards. These cards are the same size as a business card and note that their companion has dementia.
In 2017 Gloria was trying to get Arthur back into their home when a neighbor thought Arthur was abusing Gloria. The police were called, and despite the fact that Gloria told them Arthur has Alzheimer’s, they wouldn’t listen or didn’t understand how to treat a person living with the disease. Arthur was arrested and spent the night in jail.
It took Gloria over a year to get the arrest removed from Author’s record. Afterwards, she decided that this kind of treatment for people with special needs, especially for people of color, was unacceptable. She spoke with the police chief and together they worked on a resolution. Gloria had an influence on the development of Project Guardian to help first responders become better aware of who in their community has special needs, like Alzheimer’s, and how to respond differently.
Talking about stigma
For some people in the Black community a dementia diagnosis is seen as embarrassing or something to keep private. They worry it may affect their social or professional standing and don’t want to be connected to it.
Gloria sees the importance of bringing this disease to light, especially for Black Americans. She thinks it’s important to be open about Arthur’s diagnosis in hopes it will help other people feel more comfortable in sharing about their loved one living with the disease.
Gloria began volunteering as an advocate with the Alzheimer’s Association. She would go to legislative meetings and speak with congressmembers about the importance of getting funding and support for a disease that affects 6 million Americans.
After years of service for the Association, Gloria was invited to participate in an Association hosted event with volunteers from all over the country. She shares what it feels like when so many passionate people come together to share their stories and believe in a similar cause.
“Everyone’s story is different,” said Gloria, “You never know whose story will resonate with someone. It can help make a difference while going through this journey”.
Between Arthur’s diagnosis and COVID-19, Gloria felt like she’d been in a type of lockdown for six years. Now she is ready to move forward by traveling, visiting family, and doing all the things she has been unable to since the diagnosis.
Gloria knows that everyone’s journey with dementia is different. This is why it’s important to learn as much as you can about both the disease and how to provide the best care you can.
Gloria continues to be an advocate for the Alzheimer’s Association. “People say, ‘Continue to tell your story,’” said Gloria. “I’m going to keep telling it because people need to hear it. I try to be as honest as I can because I know it’s hard for people to open up. Maybe that’s why I’m here to tell the story, to help others.”
To learn more about resources for the Black community, visit alz.org/africanamerican.
California State advocacy day is coming on May 8, 2023. If you’re interested in becoming an Alzheimer’s Association advocate, like Gloria, visit act.alz.org/CAAdvocacyDay2023.