Black doctors and family caregivers are embracing an online toolkit designed to help with early detection of dementia or long-term memory loss.
While memory loss is the hallmark symptom of dementia, as the disease progresses, patients also experience confusion, have difficulty completing familiar tasks, have problems with words and writing, and often take to wandering or becoming agitated.
The Gerontological Society of America’s (GSA) recently unveiled a new model to improve health-related outcomes and well-being for older adults diagnosed with dementia and their families.
The new program, developed by experts in GSA’s Workgroup on Cognitive Impairment Detection and Earlier Diagnosis, is much needed in the Black community because Black elders are living longer and are less likely to use nursing homes, according to Black doctors and caregivers.
The GSA Workgroup’s KAER Model identifies four steps: 1) Kickstart the cognition conversation; 2) Assess for cognitive impairment; 3) Evaluate for dementia; and 4) Refer for community resources.
“The steps that they are recommending are excellent,” said Dr. Khadijah Lang, president, Golden State Medical Association, the California chapter of the National Medical Association.
“You’ve got to first get people to be willing to be involved in the conversation,” she said.
Lang stated in some instances family members may not recognize or may be in denial when an older relative is in the early or questionable stages of dementia. Because family members may not recognize changes because they’re seeing them everyday in very small, incremental losses, the new GSA toolkit offers physicians a way to open up the conversation.
“We are not all psychiatrists. Many primary care providers may not be quite comfortable with bringing that up, especially if they don’t have an established relationship with the patient and/or family,” Lang said.
To help with those concerns, the KAER approach recommends primary and family-care providers:
– Listen for and acknowledge any questions or concerns about cognition expressed by their older patients or family members, as well as use clinical judgment and observational skills to identify signs and symptoms of cognitive impairment.
– Use brief cognitive tests and other structured assessment tools to detect cognitive impairment. Conduct diagnostic evaluations for dementia, after explaining status test results with patients and family members.
– And then provide references to community-based agencies and individuals to assist.
Not only do those suffering with dementia and their families want to know what’s going on, they want to know what kinds of support they may receive, stated Richard Fortinsky, PhD, professor, University of Connecticut School of Medicine.
He explained KAER to ethnic media during the July 2017 World Congress of Gerontology and Geriatrics in San Francisco, where the toolkit was made public.
“About 5.2 million or so Americans are living today with Alzheimer’s disease, and by mid-century, that number is supposed to almost triple to about 14 million,” Fortinsky stated.
Physicians may kickstart the conversation, even for older adults who are not symptomatic, showing no memory or other cognition-related concerns, he said. For instance, when a patient is just visiting for a diabetes issue, that’s the time to start the discussion.
“In the end what’s most important is desired outcomes …, but the bottom line is that without detection, without diagnosis, the referrals really won’t happen and the early medical care will not be provided, and the desired outcomes really will not be achieved,” Fortinsky added.
GSA first introduced the free online toolkit in a 2015 report, which alerted that cognitive impairment in older adults is severely under-detected in the United States.
As a result, older adults are unlikely to receive a diagnostic evaluation to determine their cause; those who have dementia are unlikely to receive a diagnosis. Likewise, without a diagnostic evaluation, those with treatable conditions are unlikely to receive treatments, the GSA Workgroup reported.
Early detection for Black elders would mean curbing health care disparities in her community, said Jurline Redeaux, a social worker with the Department of Children and Family Services, who also volunteers with the Alzheimer’s Los Angeles. [www.alzgla.org]
“I really don’t believe that we are being screened or talked to about some of these cognitive things that might be showing up early on and can be treated,” Redeaux said.
She feels that physicians should be trained specifically on how to interact with people of color, especially around critical areas in their lives and the prevalence of Alzheimer’s.
Lang said having a toolkit empowers physicians to have those conversations, where they otherwise may not feel they can pose delicate questions in non-offensive ways in efforts to avoid pushing patients away from care.
For instance, one primary care doctor may be comfortable with managing a patient’s diabetes, cholesterol levels, blood pressure or heart disease to a basic level, but may not be comfortable dealing with a mental health issue, due to a lack of training or expertise in that area, she said.
“We have to remember that in our country, and pretty much all cultures across the board, and particularly in the African American culture, there is a large stigma attached to mental health. And so, if you’re dealing with African American patients and their families and start bringing up questions that are questioning a patient’s mental health status and ability, it’s reasonable to expect that people might be offended,” Lang said.
Marie Vernon, program director of All Hours Adult Care, [www.allhoursadultcare.com/] a free senior placement and referral service for all California counties, believes KAER is valuable and can be useful, if disseminated and made available to the Black community on a regular and consistent basis.
“I think that in order for it to be effective, there needs to be people of like culture, so in the African American, the Hispanic communities, their social workers, their adult protective workers, case workers, those are the individuals that need to give this information and be aware of its benefits to be able to explain it to their clients,” Vernon said.
The benefits she’s seen with early detection in her own service has included families trained on how to help and redirect their loved ones, to guide them slowly and effectively into medical treatment, Vernon said.
Charlene Muhammad wrote this article for the Los Angeles Sentinel Newspaper with the support of a journalism fellowship from New America Media, the Gerontological Society of America, and AARP.
