Why does Alzheimer’s Affect Latino Families So Severely?

Diagnoses of Alzheimer’s disease are rising in tandem with the aging population in the United States, but the disease isn’t spreading evenly across racial and ethnic groups, according to a collaborative report from the USC Edward R. Roybal Institute on Aging, the USC Suzanne Dworak-Peck School of Social Work, and UsAgainstAlzheimer’s.

In fact, Latinos are 50 percent more likely to develop Alzheimer’s than non-Latino whites, but are less likely to pursue treatment for the disease. Instead, they rely on informal care from family and community members, which can lead to poor health outcomes because of low awareness and limited access to medical resources.

Maria Aranda, executive director and associate professor at the USC Edward R. Roybal Institute, said when she was a medical social worker, she noticed that Latino families affected by dementia were providing hours of informal care with very little knowledge of the disease.

Aranda and the research team at the Roybal Institute found that Latino families are less able to access formal treatment from medical providers and social workers, which leads to more severe cases of dementia as conditions progress. The graphic below illustrates the barriers to care, and how this disparity can cost Latino families significantly more in the long run.

View the text-only version of this graphic.

Like many vulnerable minority populations, Latino families are disproportionately affected by social determinants of health — environmental factors that influence one’s quality of life — like income level, English language proficiency, health insurance, access to education and transportation.

By 2050, the total of direct and indirect costs of Alzheimer’s disease in the Latino community is expected to be $105.5 billion, according to the report by the Roybal Institute.

The report also found that direct costs for formal health care, like insurance, copays, nursing homes and hospice pose a greater burden for Latino families in low-income communities. These same families are therefore more likely to seek out more affordable, long-term assistance from unpaid family members, who in turn accumulate indirect costs that go unacknowledged.

Indirect stressors — time away from work, fees for medical equipment like wheelchairs, home improvements for accessibility — can increase the toll of caregiving for Latino families, in addition to the physical and emotional cost of support for family members supporting the patient, Aranda said.

This perception of a discriminatory system can yield one-way communication, instead of a shared dialogue between patient and provider.

The current political and social culture that stigmatizes Latino communities and undocumented populations poses a unique barrier for families who fear provider discrimination, according to Aranda.

“Many Latino families have never understood they have the right to ask questions, or the right to certain health benefits,” she said. “There’s a fear of being labeled as a problematic patient, or of having their benefits taken away.”

This perception of a discriminatory system can yield one-way communication, instead of a shared dialogue between patient and provider, Aranda continued.

All of these determinants contribute to the resulting health disparities where Latino families are impacted more harshly by the rise of Alzheimer’s in the United States. The Roybal Institute’s report projects the price of indirect costs alone for Latinos will increase tenfold, “from $3.9 billion in 2012 to $39.8 billion (in 2012 dollars) in 2060.”

Health literacy is the ability to obtain and implement health information and resources, and is critical to navigating social determinants. Without proficient health literacy, families are less likely to recognize signs of early onset dementia, meaning cognitive abilities may decline more severely. According to the Alzheimer’s Association, early signs of Alzheimer’s can include:

However, indicators of Alzheimer’s can often be mistaken for symptoms of co-occurring conditions, or assumed to be signs of aging in general. When early symptoms go unaddressed, an aging patient’s quality of life is threatened, including a greater risk of isolation, depression and worsening mental state, according to Dr. Kathleen Becker, assistant professor at the USC Suzanne Dworak-Peck School of Social Work Department of Nursing.

“Underserved communities need people who will show up for them,” said Becker, who conducts home health visits for patients living with dementia in Baltimore, Maryland.

Becker emphasized the importance of educating a patient’s family caregivers, and using their presence during a medical visit as an opportunity to include them in decision-making, and to gain a deeper understanding of nuances around the patient’s condition.

Many patients are treated by an interdisciplinary team, which typically includes a nurse practitioner and social worker. Depending on the patient’s needs, sometimes the team is made up of occupational therapists, psychiatrists and dieticians.

“The system is chaotic when a patient has 10 specialists and as many conditions,” Becker said.

During discharge, communication among providers about treatment is critical, Aranda said. If not done properly, it could result in a readmission to the hospital. And with so many members working together, it’s necessary to outline what ideal communication looks like.

“It has to be a continual loop,” Becker said. “That means following up with patients and other specialists about medication management or home repairs” in person, or, more often, over the phone or by email.

Despite the complexity of priorities for any given care team, it’s essential that providers continually put the patient first.

“Providers are always burdened by time,” Aranda said. “But we have to consider that these families are heavily burdened too.”

Please note this article is for informational purposes only. Individuals should consult their health care provider before following any of the information provided. To find out more, visit the National Institute on Aging’s page, “Helping Family and Friends Understand Alzheimer’s Disease,” which is also accessible in Spanish.

Citation for this content: Nursing@USC, the online FNP program from the University of Southern California