The New York City Chapter of the Alzheimer’s Association had been trying for years to reach out to the local Latino community to provide information and support for people with Alzheimer’s disease and their families. The group translated educational literature about the disease into Spanish and held mini workshops at its Midtown Manhattan headquarters on a regular basis. But despite these efforts, people just weren’t responding.
The problem, says Isabel Guzman, BSN, RN, who has focused her practice on dementia care since 1990, is that the chapter wasn’t able to culturally connect with Hispanics until it partnered with the Latino Alzheimer’s Coalition of New York (LAC-NY), an organization Guzman co-founded in 1998.
“When you want to do health education in the Hispanic community, you have to put a Hispanic face on the presenter, because there’s a trust that’s automatically present [when you do],” explains Guzman, who works as a home health nurse and serves on a volunteer basis as assistant vice president of LAC-NY.
Another barrier to participation, she continues, was that many Hispanic elders living with Alzheimer’s disease were intimidated, even terrified, by the prospect of getting on a subway or bus to travel to an unfamiliar part of Midtown Manhattan. Some of them couldn’t even travel by themselves. Therefore, getting the message to the Hispanic community would mean that someone would have to travel into the neighborhoods where Hispanics lived.
That’s where the Latino Alzheimer’s Coalition and volunteers like Guzman were able to help. Armed with outreach materials provided by the Alzheimer’s Association, and a bilingual, bicultural program Guzman created in 1995, she and others made their way to Hispanic churches and senior centers, where they talked to people about memory problems, different types of dementias, Alzheimer’s research, diagnosis and treatment.
“In that way, we helped make a dent in the problem,” she says.
This is just one example of how nurses of color can play a crucial role in providing culturally and linguistically competent care, education and support to minority Alzheimer’s patients, family caregivers and communities. Whether they work in hospitals, nursing homes, home health care, public health or academic research centers, their contributions are urgently needed, because Americans of color bear a disproportionately high burden of Alzheimer’s disease and begin to show symptoms of this devastating illness much earlier than their Caucasian counterparts.
Research by the Alzheimer’s Association has found that Alzheimer’s disease, the most common form of dementia, is more prevalent in African Americans than among white Americans, with estimates ranging from 14% higher to almost 100% higher. According to the association’s report African Americans: The Silent Epidemic of Alzheimer’s Disease, black Americans also have a greater familial risk of the disease.
Several recent studies have shown that Hispanics, too, have a higher rate of Alzheimer’s than non-Hispanic whites, and that the problem is increasing at an alarming rate. The Alzheimer’s Association estimates that the number of Hispanic elders suffering from Alzheimer’s and related dementias could increase more than sixfold by the year 2050, from fewer than 200,000 today to as many as 1.3 million.
Why the disparities? Cardiovascular disease, which is more prevalent in the African American community, may be an important risk factor in that population. People with a history of high blood pressure or high cholesterol levels are twice as likely to develop Alzheimer’s disease, and those with both risk factors are four times as likely to suffer from some form of dementia.
Hispanics also have a high incidence of chronic conditions, including vascular disease and diabetes, that may be risk factors for Alzheimer’s disease and stroke-related dementia. The prevalence of diabetes is 64% higher in Hispanics than in non-Hispanic white Americans, the Alzheimer’s Association reports, and 43% of Hispanics with dementia had diabetes, stroke or both.
In response to this growing health crisis, organizations across the country—from Alzheimer’s Association chapters, medical schools and state departments of elder affairs to federal agencies like the National Institute on Aging—are developing innovative programs and initiatives aimed at closing the gap of racial and ethnic Alzheimer’s disparities. Programs such as El Portal, developed by the Alzheimer’s Association’s California Southland Chapter, have become recognized as national models of culturally and linguistically sensitive outreach projects.
El Portal, which means “Gateway” in Spanish, is a partnership of more than 100 community organizations and service providers that offer “dementia-friendly services” to the Hispanic community in South Central and East Los Angeles. These services include adult day care, in-home respite, support groups for families and caregivers, case management, education, training, legal assistance, transportation, home safety intervention and a Spanish-language helpline.
Initially, El Portal began with a network of five adult day care centers, two legal clinics and seven support groups, and grew from there. The project’s success eventually led the chapter to create a sister program, the West Central Dementia Care Network, to serve the needs of the local African American community.
“[Both programs] are designed to create services for an underserved population,” says Debra Cherry, PhD, the chapter’s executive vice president. “We share knowledge, teach people about dementia and [help community organizations develop and deliver] services to serve that community.”
While large-scale community outreach efforts are important, Cherry believes minority nurses can perhaps make their biggest contributions on a more personal level—by providing one-on-one care to Alzheimer’s patients of color and helping their families learn to understand and cope with the disease.
“So many people get a diagnosis [of Alzheimer’s] and then get nothing, so there’s clearly a role for the nurse,” she says. “[Dementia] is often viewed as a normal part of aging, so we need to raise people’s awareness that it is actually a disease and not just part of the human condition.”
For many Alzheimer’s patients, simple day-to-day activities such as eating, bathing, dressing and communicating with others can be a source of confusion, fear and anxiety. Gloria Rodriguez Adams, RN, MSG, a clinical manager at the Sports Concussion Institute’s Memory Disorders Clinic in Los Angeles, says nurses of color are often in a better position to help minority dementia patients cope with a world they no longer understand, because they share a common culture.
“Having nurses who can relate to [the patient’s culture], whether it’s music or food or a saying or places, just allows the anxiety level to decrease,” she explains. “If we’re able to relate to things that are familiar, I think we can help the patient relax more and decrease the medicine administration for behaviors that are difficult.”
For example, music is an important tool nurses can use to help calm anxious Alzheimer’s patients, says Rodriguez Adams. Often, the only memories these patients have are from their childhood days, and playing music from those days can bring them solace. For African American patients, that might mean spirituals or church music, while Hispanic patients born outside the United States often benefit from hearing music from their native country.
“You start putting on some regional music from their country and you now have a person who is happy instead of agitated,” Rodriguez Adams says.
She remembers one African American patient who would sometimes scream at the top of her lungs, partly because of dementia and partly because of metabolic changes brought on by diabetes. “But then I found that if I would bring her to the nurses’ station, just her and I, and we would start to sing ‘Swing Low, Sweet Chariot’ or ‘Amazing Grace,’ it would help bring her down to a level of calm.”
Nurses who share cultural connections with their patients are also likely to be more attuned to the role religion and spirituality play in a minority Alzheimer’s patient’s life. For example, says Guzman, many Hispanics believe in leaving things up to God. Therefore, they may be reluctant to seek treatment or take advantage of available support services.
“They believe very strongly that the Lord will provide and they’re very reluctant to go beyond that,” she explains. “They feel, ‘This is the Lord’s way, this is what the Lord has brought and I believe the Lord will take care of it.’”
Being familiar with this cultural tradition can help a nurse communicate the importance of treatment, Guzman continues, because the nurse can couch it in language that doesn’t conflict with the family’s or patient’s beliefs. He or she can say, for example, that God is strong but that certain medications can help, too.
Because Alzheimer’s disease can have a devastating effect not only on patients but also on their family caregivers, another key aspect of culturally competent dementia care is being sensitive to traditional family roles. Guzman says it’s important to understand the family hierarchy in the Hispanic culture, and that this hierarchy cannot be ignored or undermined. That applies to both the parents with Alzheimer’s and the children who are caring for them.
“No matter how incapacitated [the parents] are, they still have to feel that they are in control of their lives,” she says. “Even though they’re totally dependent on your care, there’s still the parental hierarchy that you have to really, really be careful with when you take care of them, because you cannot take that pride and respect away from them.”
According to the Alzheimer’s Association, large numbers of Hispanic elders are first-generation immigrants with little or no formal education and limited English-language proficiency. In addition, says Guzman, they are generally less well-informed about health issues than the Caucasian population and they don’t have as strong a support system of family members who are informed. “Their education level is usually much lower and they’re not as assimilated into this country as their Caucasian counterparts,” she notes.
The Caucasian population has been bombarded with information about Alzheimer’s disease for years, and yet information targeted to the Hispanic population didn’t even exist until 1993, she maintains. Furthermore, many immigrant and low-income Hispanic families are so busy just trying to support themselves and survive that they don’t have time to read or watch television or surf the Internet for information.
These family dynamics also make it harder to recruit patients of color into Alzheimer’s disease research studies, Rodriguez Adams believes. Many caregivers in minority families are children rather than spouses, and they tend to bear a disproportionate burden of dementia care responsibilities compared to the majority population. Asking an Alzheimer’s patient to participate in a study requires participation from the caregiver, she says. “They have the demands of their own life and they say: ‘And now you want me to go to how many visits to UCLA to do what?’”
Another reason why racial and ethnic minority elders are so underrepresented in Alzheimer’s disease research is their lack of trust in the medical system, Guzman says. Here, too, culturally and linguistically competent minority nurses can make a difference in breaking down barriers to participation and replacing them with bridges.
“Once you establish that trust [with Hispanic patients], then recruiting them into research is much easier,” she says. “Unless you have the ability to teach them, the ability to diagnose them, the ability to treat them in their language and establish that trust, you’ll never get them into research.”
Increasing the participation of black Americans in memory disorders research is the focus of the African American Community Outreach Program (AACOP) at Duke University Medical Center’s Bryan Alzheimer’s Disease Research Center in North Carolina. The outreach program was created in 1995, a decade after the Bryan center was established, because African Americans were underrepresented in the center’s research, says the Rev. Henry Edmonds, MEd, program coordinator for the AACOP.
“Our major objectives are to make people more aware of Alzheimer’s disease and that African Americans contract the disease at almost twice the rate of the general population, and also to get more African Americans involved in our research protocols,” he states.
Many elderly blacks who grew up during the era of racial segregation and Jim Crow still harbor fear and mistrust of medical research, Edmonds continues. “[In those days], African Americans weren’t even permitted to go into an institution [like this],” he explains. “The population that we serve, the older population, still remembers the Tuskegee Experiment where African Americans with syphilis were left untreated [for 40 years].”
Still another reason for the low participation of African Americans in Alzheimer’s research is that black Americans have historically had shorter life expectancies than whites—although this gap has begun to narrow in recent years. Age is a predominant risk factor for dementia “and in many cases African American didn’t live long enough to get Alzheimer’s disease,” says Edmonds. “Also, when African Americans are diagnosed with Alzheimer’s, they are often in the very later stages of the disease when the treatments that are available can’t do much good.”
Prior to accepting her current position, Rodriguez Adams spent several years working with African American Alzheimer’s disease patients at Centinela Freeman Regional Medical Center, one of the providers in the West Central Dementia Care Network. She was able to form close bonds with many of her patients despite their cognitive impairment. Although she is Hispanic, Rodriguez Adams says she had no trouble building relationships with these patients.
“When I first started working with the African American population, I thought: ‘Will they be willing to accept me even though I’m Latina?’” she recalls. “[It was wonderful to see] how the African American community has embraced the Latino staff for all these years.”
Rodriguez Adams believes minority nurses can help raise awareness of the importance of providing culturally sensitive dementia care by making sure they pass their specialized cultural knowledge on to their majority colleagues, including administrators and other nurses.
“It is important for minority nurses to communicate with those who can effect change,” she says, adding that she often leaves notes for administrators about patients’ cultural needs after working a weekend shift at a nursing home for Alzheimer’s patients. “I also think it’s important for minority nurses in supervisory positions to really connect with their [support] staff. [We need to] pass along that passion and pull them up so they will become the ones who will go on to further their education and become the next group of minority nurses.”