Better Thinking
By Lindsay Walker, Executive Director for the Alzheimer’s Association Cleveland Area Chapter
Going to the doctor can be scary for some. A good doctor-patient relationship is built on honesty, trust, the ability to spot symptoms, ask questions, and then make a diagnosis.
So it goes with the diagnosis of Alzheimer’s or dementia. But what happens when families feel doctors aren’t listening to them? Gina Martinez-Villagomez remembers taking her mother Merida to the doctor. The family noticed increasing times when she didn’t recognize her husband, or she would say she had to get home before her parents got mad at her.
After tests, Martinez-Villagomez said the doctor told the family they found two spots on her mother’s brain and that she probably had a small stroke. She’s fine, Martinez-Villagomez said she remembers the doctor saying. “She’s not fine,” Martinez-Villagomez said in recounting the story. “That’s one thing that made me upset,” she said. “We know she has Alzheimer’s and you guys are not doing anything.”
Her mother died in 2019 with Alzheimer’s disease.
There’s a schism in the doctor-patient relationship that must be fixed if we are going to achieve the Alzheimer’s Association’s goal of getting people with mild cognitive impairment (MCI) or dementia diagnosed earlier in the process. Last year, the Alzheimer’s Association did a survey of primary care physicians that found:
- Nearly 2 in 5 (39%) report that they are “never” or only “sometimes comfortable” making a diagnosis of Alzheimer’s or other dementias.
- Nearly one-third (27%) report they are “never” or only “sometimes comfortable” answering patient questions about Alzheimer’s or other dementias.
Fast forward to this year. The Alzheimer’s Association, in its annual Facts and Figures report, surveyed communities of color about their experience with doctors and the health care system.
- 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.
- Among non-White caregivers, half or more say they have faced 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.
Getting good medical care and early diagnosis of dementia is so important because health disparities exist in the African American and Hispanic communities. Older African Americans are almost twice as likely as whites to get Alzheimer’s or another dementia. Hispanics are 1.5 more times likely.
The results also suggest there is a problem on the patient and physician side of the relationship. Here’s what the Alzheimer’s Association is doing, and we will talk about some other potential solutions. Lastly, I will suggest some tips for you when you go to the doctor or take a loved one to the doctor because of cognitive issues.
The Alzheimer’s Association’s Project Echo® Increases Training for Doctors
To dramatically increase the accurate and timely diagnosis of people with Alzheimer’s and other dementia, the Alzheimer’s Association has a program where it is pairing dementia experts with physician practices to raise their level of knowledge. Through Project Echo®, physicians can present cases and get coaching from a multidisciplinary clinical team from around the country. The goal is to significantly increase the number of people who receive affordable, high quality care and support.
It’s a five-month interactive learning experience and Lake Health, here in Northeast Ohio, has had several rounds of physicians participating. Those physicians see more than 15,000 patients aged 65 and older.
We know that 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 so that disparities are not perpetuated. By 2050, up to 39 percent of this older adult population will be non-White Americans.
Some of the needs identified include health care providers needing culturally diverse staff members who reflect the population served. They need bilingual staff or interpreters and patient materials and office signage that are translated and sensitive to cultural norms. At the Alzheimer’s Association we are also looking for diverse volunteers and culturally diverse organizations we can partner with to reach more people. If you want to help, please reach out to me.
Here’s What You Can Do to Assist in Getting a Diagnosis
Now here are some tips for you:
If you, your parent or your spouse is exhibiting cognitive issues, go to the doctor.
If it’s a loved one, ask if you can attend the doctor’s appointment and 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 Cleveland Area Chapter at (216) 342-5607. We can help educate you on the stages of the disease and do a care consultation for you and your loved one.
It’s going to take all of us to make sure our loved ones get the care and support they need.
Lindsay Walker is Executive Director for the Alzheimer’s Association Cleveland Area Chapter. You can reach her at [email protected].
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Visit alz.org or call 800-272-3900.
