One in 9 people that are 65 and older are living with Alzheimer’s dementia, and Black people are about twice as likely to have the disease compared to white people, according to an Alzheimer’s Association survey that shows a large number of minorities are skeptical about being able to get good care.
The “Race, Ethnicity and Alzheimer’s in America,” survey from the Alzheimer’s Association examines perspectives and experiences of Asian, Black, Hispanic, Native and white Americans, in regards to Alzheimer’s and dementia care, and health care in general.
Two-thirds of Black Americans believe it’s harder for them to get excellent care for Alzheimer’s disease or other dementias according to the survey.
Loretta Veney of Clinton, Maryland, who is a Black woman, can attest to this challenge after seeking care for her 92-year-old mother who was diagnosed with dementia by a doctor that both women found to be disrespectful.
“He said she was in the beginning stages of dementia and my mother looked terrified,” Veney said.
Veney said the doctor never acknowledge his patient was upset, and instead insisted she accept a prescription for a medicine that Veney and her mom repeatedly stated she did not want to take.
“And then he says, ‘That’s what’s wrong with you people — you don’t want to listen to any guidance — you just want to complain,’” Veney recalled.
Adamant that her mother be treated with more respect, Veney eventually found another doctor for her mother. “And she was fabulous,” Veney said.
Focusing on health care experiences in general, the Alzheimer’s Association survey finds that half of Black Americans (50%) report experiencing health care discrimination. As do Native Americans (42%), Asian Americans (34%) and Hispanic Americans (33%).
The top concern expressed by nonwhite caregivers, according to the survey, is trying to navigate health care for loved ones with health care providers who don’t listen to what they are saying because of their race, color or ethnicity.
Veney agrees with this: “I am a fierce advocate for my mother,” she said.
She said that her mother’s previous doctor left them in the dark about the recommended medicine.
“He didn’t explain what the drug was or anything, just shoved it over there [saying] here, here, here — just take this stuff.”
Veney said the pair initially agreed that her mother would try the drug for 30 days, but stopped after six because the drug conflicted with other prescriptions and was causing serious adverse reactions.
“If he’d had a dialogue with us from the beginning instead of just shoving it over to us — we probably would not have had that issue,” Veney said.
Her advice to other caregivers is to go to appointments with multiple questions written down; don’t leave until all questions are answered; take copious notes and record the conversation on your cellphone.
“Usually when you do that — they pay so much more attention than they would if you were just writing it down. Because then you have every tone and inflection,” Veney said.