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“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 percent) report they have
experienced health care discrimination. More than two in
five Native Americans (42 percent) and one-third of Asian
Americans (34 percent) and Hispanic Americans (33 percent)
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.
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