Ernest Gragg is “a little stubborn” about things and fiercely independent, said her daughter Priscilla Robinson.
You can see it in how she lives her life. Ms. Gragg worked until she was 83 years old. A history and English teacher, she retired from teaching and then went to work again fluctuating from full-time to part-time to full-time again. Even after retiring at 83, she went back to work as a contract employee.
Today at 86, Gragg is showing signs of memory loss. A long-distance caregiver, Robinson said she talks to her mother every day- sometimes multiple times a day.
“She admitted to me that she’s gotten turned around a few times driving,” Robinson said. Another concern: “She repeats herself over and over and over,” Robinson said. The family has voiced other concerns.
Robinson took her mother to the doctor to get checked for memory issues, but the doctor did not diagnose her with dementia and did not give any advice on how to handle the family’s concerns.
“They were a little cavalier in the way they handled my concerns,” Robinson said. “When you see her once every few months and I talk to her every day, I feel I know her better than the doctor knows her….If I went in and thought it was an ulcer, the doctor would tell you don’t eat this, do that. Why not for this issue?”
Karen D. Gorman Jones said when she first started noticing changes in her mother, her mother’s doctor would not even acknowledge her concerns. Her mother changed doctors and the geriatric doctor told Gorman Jones that nothing was wrong with her mom, Inez Gorman. Less than a year later, Gorman Jones said, the diagnosis came – her mother had Alzheimer’s disease.
African Americans are disproportionately impacted by Alzheimer’s disease. Older African Americans are almost twice as likely as whites to get the disease. But new research findings also show they bear the brunt of health care disparity and discrimination in getting Alzheimer’s and dementia care.
Findings from two national surveys appearing in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report reveal that half of African Americans (50%) report they have experienced health care discrimination. More than 2 in 5 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced discrimination when seeking health care.
In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient, with the top concern being that providers or staff do not listen to what they are saying because of their race, color or ethnicity.
“Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,” said Carl V. Hill, Ph.D., MPH, Chief Diversity, Equity and Inclusion Officer, Alzheimer’s Association.
Eric VanVlymen, Ohio Regional Leader of the Alzheimer’s Association, said in Ohio, the Association is conducting community forums to get more insight into Ohioans’ experience. “We consistently say go to the doctor if you are noticing memory issues, but it is imperative that once people are there that people are diagnosed as early as possible and get the medical care needed.”
Robinson said in her case, she doesn’t think she was being discriminated against. The doctor just did not want to deal with it.
“It was not pushed to the back of the stove, it was pushed off the stove,” Robinson said. “The doctor was not helpful in addressing these things. All of these things are disheartening. I just feel it’s going to be a struggle.”
She continued, “Right now I don’t have anybody to help. Where do I start, what do I do, all of these things are of a concern to me.”
People with immediate concerns can call the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900. The Alzheimer’s Association is helping to train primary care physicians to increase the accuracy and timeliness of diagnosis of people with Alzheimer’s and other dementia through an initiative called Project Echo®. Once enrolled, physicians can present cases and get coaching from a multidisciplinary clinical team of experts from around the country.
VanVlymen said current and future health care providers must be prepared to screen, diagnose and treat Alzheimer’s and dementia in racially and ethnically diverse older adults because by 2050, up to 39 percent of this older adult population will be non-White Americans.
“At the Association we are focused on working to understand how we achieve health equity in dementia because everyone deserves accurate and timely diagnosis and effective treatment,” VanVlymen said.
Tips on Getting an Alzheimer’s Diagnosis
- If you, your parent or spouse is having memory issues, go see a doctor
- If it is a parent or spouse, ask if you can attend the doctor’s appointment
- Make sure that your loved one has signed paperwork to allow the doctor to share information with you.
- Remember you are the best advocate for your loved one. If you are not satisfied with what the doctor is saying, keep asking questions or ask for a second opinion.
- Contact the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900. The Association can help educate you on the stages of the disease and do a care consultation for you and your loved one.