Newswise — Liliana Oakes, M.D., grew up in Colombia. Her grandfather was a man of service, both to his family and the community, she remembers, and this inspired her to serve others. He also taught her, in the last stages of his life, what it is like for families who care for elders with Alzheimer’s disease. He was one of those elders.
Today, Dr. Oakes is an associate professor in the School of Medicine at The University of Texas Health Science Center at San Antonio, where she is actively involved in caring for patients and families coping with Alzheimer’s. She answered a few questions for this report.
Q: Dr. Oakes, how do Hispanic families tend to respond to Alzheimer’s disease?
A: They think it is a normal part of aging. They say, ‘Well, abuelito cannot drive, it is not a problem. He is getting old, we will drive for him.’ Then they say, ‘Well, abuelito, he is getting lost in his house. He is getting old.’ They compensate. Only when he starts screaming at night, do they say he is crazy. They believe dementia is a word for crazy. Dementia is a type of locura, a craziness. The person went crazy. The stigma is around the disease, and culturally it is not like saying you have a kidney problem or a heart attack. They only come in when the family member develops behavioral problems.
Q: What are other barriers to seeking help?
A: Forty percent of Latino elders born outside the U.S. don’t speak English. There is a trust issue. When you hear the doctor speaking English and not Spanish, it is a hard situation. And remember that people with early Alzheimer’s may be able to fake competence so well that family members often don’t know they have cognitive problems.
In addition, one-fourth of Hispanic elders are uninsured. If that is the case, and the family is struggling to make a living, and a member needs to quit working to be the main caregiver 24/7 of a demented elder who is shadowing them everywhere they go, screaming, leaving the house, agitated — you are looking at a horrible picture of poverty, complicated by increased depression, anxiety and risk of institutionalization.
Q: Do Hispanic families feel guilty about placing a member into care?
A. Oh yes, they do. In our culture, that is not something you do to your mom. How could you put mama into a nursing home? It is a much less accepted model of care among Hispanics. In the Latino community, the decision making is much more a family issue than an individual issue. Regardless, when an elder doesn’t get diagnosed, it leads to an increased burden for his caregiver and society. Alzheimer’s can be a very painful and long journey for a family — even as long as 20 years.
Q. Are Hispanics at greater risk for Alzheimer’s than other populations?
A. There is a lot of evidence that Hispanics/Latinos are at higher risk. Age, we know, is the single greatest risk factor for Alzheimer’s. At age 80, half of elders in all ethnic groups are at risk for the disease. Every time you meet an octogenarian, 1 out of 2 is going to have the disease. Considering that Latinos are the fastest growing minority population in the country — 13 percent at the last Census — we will have the fastest growing elderly population by 2050 with the largest number of elders with Alzheimer’s. Plus, our elders are living longer because of access to health care, medications and surgeries and management of diseases that once killed at a younger age.
The next issue is education. It seems to have a protective effect against development of Alzheimer’s, but Hispanics have the lowest educational levels among minority groups. One in 10 Hispanic elders has no formal education. We try to break the trust and language barriers by educating more Hispanic primary care doctors to care for these elders.
The biggest issue is that Latinos have more cardiovascular disease risk factors, including diabetes (around 64 percent higher than non-Hispanic white Americans), hypertension and stroke. Those risk factors, such as midlife hypertension in a person’s 30s and 40s, can get the brain into trouble later in life.
Q. What about detection tools for Alzheimer’s? Is there a culturally relevant and sensitive tool available?
A. There are a lot of cultural biases in the tools we use. Inadequate translation skews the tools. And how many bilingual neuropsychologists do we have who are qualified to do testing? You can count them on your fingers. When you have an 80-year-old with a fourth-grade education who speaks only Spanish, you need tools to match the understanding and language skills.
In general, we do not have enough bilingual health professionals to provide good assessments. Further, the major centers that have culturally appropriate tools are the academic centers, but the bulk of elders seek care in community centers. The Texas Alzheimer’s Research Consortium, of which the UT Health Science Center at San Antonio is the newest member, will look into this. We need to put culturally appropriate tools in the hands of primary care doctors.
At the School of Medicine in San Antonio, we are training residents to be critical thinkers, to provide culturally appropriate services and tools, to put together the picture for families, and to be creative in coming to a diagnosis. We are also stressing to residents that they need to know when to refer the patient to another physician who speaks the Spanish language.
Q. Is the scope of Alzheimer’s in the Hispanic population too broad for health care providers and systems to handle alone?
A. Yes. When it is 104 degrees in San Antonio or Phoenix, and there is an elder who has only one window air conditioner in a bedroom, and won’t turn it on because she doesn’t know it is hot, and gets admitted to the hospital, this is a community issue. The complexity of the disease in the Latino elder, and the caregiver burden, requires a team approach. It is a community and societal problem. We work with home health, adult protective services, area governments and the Alzheimer’s Services Association.
In fact, we are working with the Alzheimer’s association in California to pilot a culturally appropriate Latino educational program, and we have 286 caregivers participating. Preliminary evaluation indicates this is very successful. They receive eight hours of teaching and sharing and learning from each other as caregivers on what to do for their loved ones. They ask each other: What is your journey? Who do you care for, and why are you here? Sixty percent of caregivers are females, but 40 percent are male spouses and children of elders. They say the pilot program is the first time they have ever shared anything with others about this difficult assignment.
The same program was done in San Antonio with 70 caregivers, and a group in Puerto Rico wants to pilot it. We need more funding. There is certainly more to be done for these precious people — our elders and our caregivers.
About the UT Health Science Center at San Antonio:
The University of Texas Health Science Center at San Antonio is the leading research institution in South Texas and one of the major health sciences universities in the world. With an operating budget of $668 million, the Health Science Center is the chief catalyst for the $16.3 billion biosciences and health care sector in San Antonio’s economy. The Health Science Center has had an estimated $36 billion impact on the region since inception and has expanded to six campuses in San Antonio, Laredo, Harlingen and Edinburg. More than 26,400 graduates (physicians, dentists, nurses, scientists and other health professionals) serve in their fields, including many in Texas. Health Science Center faculty are international leaders in cancer, cardiovascular disease, diabetes, aging, stroke prevention, kidney disease, orthopaedics, research imaging, transplant surgery, psychiatry and clinical neurosciences, pain management, genetics, nursing, dentistry and many other fields. For more information, visit www.uthscsa.edu.