Culture / Race Impact Research and Treatment of Alzheimer's

Docs on Frontline Miss Diagnosis 40% of Time

lgbt Seniors
Culturally and racially diverse senior populations with dementia, including Alzheimer's face challeges when it comes to diagnosis and treatment. Primary care physicians often mis-diagnos the disease and have little safety net to which they can refer patients. Getty Images

Primary physicians are on the front lines for identifying dementia and Alzheimer's yet many are unprepared for their role and miss the diagnosis 40 percent of the time. Add racial and diversity issues on top and it is easy to see why research, cures, and treatment are lagging. The Health Affairs briefing on “The Long Arm of Alzheimer’s Disease" featured three panelists exploring ways to identify potential Alzheimer’s patients well before they have the disease.

There is obviously an acute need to find pre-symptomatic patients for the study, concluded Laurie Ryan, Program Director, Alzheimer’s Disease Clinical Trials, National Institute of Aging, National Institutes of Health . The challenge is asking people who are not sick to participate in trials that may actually have invasive components. Ouch! You can see the challenge there.

That is why there is a need for primary care providers to assess cognition and refer patients. Doctor – patient trust would be the determining factor. If a patient trusts their doctor, they may want to pursue further screening if they are potentially at risk. Statistics shows that PCP’s miss diagnosing cognition problems 40% of the time. And cognition screening gives them one more thing to do that is not reimbursed. But a truly patient-centered medical home should easily see how it fits into their model of care.

Ryan said there is a need to partner with primary care physicians as their recommendation might positively sway participation.

Registries might also be effective in identifying more people as well.

Roy Twyman, M.D., Vice President, Alzheimer’s Disease Research, Janssen Research and Development described Alzheimer's disease as a “demon.” Of course identifying people who are in the early stages or even asymptomatic would be ideal as Ryan alluded.

Once identified there are challenges on how to study the populations once identified. Because studies are expensive. It can take two years and $100 million dollars to test one drug. Better tools are needed to circumvent this cost and timeline. He called for a full-court press for sophisticated tools to identify Alzheimer’s Disease.

Lisa Barnes, Professor, Departments of Neurological Sciences and Behavioral Sciences, Rush Alzheimer’s Disease Center, Rush University Medical Center said that by 2050, older Americans will be a much more ethnically diverse population. And according to Barnes, the disparities that followed minorities through life will follow them into old age. She estimates that at every age category, African Americans are more prone to the disease.

To help people better prepare for a disease they may or may not end up manifesting is certainly a hard sell. And it is downright scary. But unless more people can be tested earlier, it will be hard to make advances in both finding a cure as well as well as helping people to prepare for living with the disease.

Cultural Diversity

As the number of ethnic and minority populations age and as the lesbian, gay, bisexual, transgender (LGBT) community ages as well, being culturally aware will become more important in aging services. And serving these populations with respect and dignity will be a driving force behind true culture change.

Alleged incidents of abuse, neglect, and mistreatment among different races, classes and religious groups in long-term care facilities has been reported. Being aware of cultural differences and knowing that they can impact care delivery is important. And the development of culturally sensitive programs can help bridge differences, positively impact care and lead to increased resident, family, and employee satisfaction.

Cultural sensitivity training should discuss overall organizational cultural competence as well as focus on the specific population groups and/or health issues that are relevant to the community. A well-rounded program also should help clinicians with diagnostic issues, such as identifying health conditions specific to certain ethnic patient populations or conducting skin assessments for patients with skin of color. To provide cultural competence training organizations can use an existing training program, hire a consultant, create an in-house training program, or a combination.

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