Implementing CARE for Latino Older Adults
Family caregivers of hospitalized patients will get much needed support and guidance in the 39 U.S. states and territories that have enacted versions of the Caregiver Advise, Record, Enable (CARE) Act (see box).
The CARE Act is a step forward in addressing the health of vulnerable older adults and the needs of caregivers who contribute $470 billion annually of unpaid care across states and generations. To achieve the intended public health outcomes, however, the needs of diverse communities, such as Latinos, immigrants, and other marginalized groups, must be considered as these policies are implemented.
Latinos face a growing caregiver burden. For example, the number of Latinos living with Alzheimer’s Disease is expected to grow from 379,000 in 2012 to 3.5 million in 2060. Of the estimated 8.1 million Latino caregivers in U.S., 23% are providing care for someone with Alzheimer’s Disease, dementia, or other cognitive health condition. Latino families are less likely to use formal services to provide care for someone with Alzheimer’s Disease and other dementias, and instead rely more on unpaid intensive and informal care compared to non-Latino whites. The CARE Act has the potential to make a positive impact in the lives of Latino older adults, especially those living with Alzheimer’s Disease and other dementias, by helping their caregivers manage the transitions from hospital to home.
Developed in 2014 by AARP, the CARE Act was informed by a study that found that many family caregivers perform critical and complex medical/nursing tasks without adequate instruction. In fact, a 2016 AARP report found that caregivers, on average, are spending nearly 20% of their income on caregiving activities. Among Latinos, studies have shown that while most caregivers maintain a full-time job, in addition to balancing their caregiver role, roughly 40% might take a leave of absence, change jobs, decrease work hours, or stop working entirely to fulfill the caregiver role. Latino caregivers, similar to other adult caregivers, may also experience job pressure or biases for providing care to older parents and family members.
The CARE Act has received bipartisan support in many states, but some states with the highest Latino populations, such as Arizona and Florida, have yet to enact it. According to the Long-Term Services & Supports State Scorecard, Arizona ranks 23rd and Florida ranks 46th in terms of support to unpaid family caregivers.
States that have enacted the CARE Act must overcome several barriers to implementation in our complex health care system, some of which have a distinctive impact on older Latinos. In general, barriers include insufficient time, lack of staff knowledge and confidence, as well as limited education tools for patients and families. In Latino communities, challenges include cultural and language issues, lack of health insurance coverage, low literacy, and immigration status barriers. There is a persistent shortage of bilingual and bicultural nurses in the workforce that will ultimately implement this policy in care transitions. Latino-serving health care providers, who may not be Latino themselves and are not bilingual, need preparation and support on issues related to cultural awareness, avoiding stereotypes, and care planning and coordination for Latino families.
Older Latinos and the CARE Act
Strategies to implement the CARE Act should be tailored to the needs and desires of diverse caregiver communities. In an article in the Journal of Gerontological Nursing, Billy Caceres and I recommend the following steps to implement each CARE Act provision in Latino communities:
- Recording the name of the family caregiver into the electronic health record when an older adult is admitted to a hospital or rehabilitation facility;
- To identify the family caregiver, we must get to know Latino families. Although most studies indicate that older children, often daughters, may serve as primary caregivers, this role might be shared or might include extended family. Defining the “cuidador primario” is the first step.
- Notifying the family caregiver of discharge plans to another facility or back home;
- Since the majority of Latino caregivers balance a full-time job with caregiving responsibilities, planning for discharge should be initiated upon admission through a respectful approach that includes educating and guiding family caregivers about the process. These efforts might help caregivers avoid needlessly losing time at work.
- Providing instruction of the medical/nursing tasks that the family caregiver will perform at home.
- Bilingual materials and instruction are an obvious need and should ideally be reinforced through health care team communication. Latinos trust and report (81%) turning to health care professionals, including physicians, nurses, social workers, and pharmacists, more than any other sources. Including more than one family caregiver in the discharge teaching session might be well received, as 66% of Latinos report turning to family and friends for help. This strategy can also offer reinforcement post discharge.
- About one half of family caregivers turn to government sources for information; therefore, multi-level strategies for follow-up explanation and instruction may be necessary, including resources such as bilingual helplines and consumer referrals. Alliance partnership support can promote effective health care transitions in the local community. For example, many of the family caregiver instructional videos are already available in Spanish. AARP and other Home Alone Alliance members should continue to work and expand collaboration with Latino national organizations that can market and disseminate materials widely.
Latino health professional organizations, such as the National Association of Hispanic Nurses, the National Hispanic Medical Association, and Latino Medical Student Association, can and should be partners in these efforts. Also important are other organizations that work to address the economic and education needs of Latinos and those in consumer advocacy, such as the National Hispanic Council on Aging, LatinosAgainstAlzheimer’s, UnidosUS, and League of United Latin American Citizens. Partnerships with faith-based organizations may also provide opportunities to raise awareness and to promote advocacy initiatives.
Including Latinos in Policy Research
Further research is necessary to analyze the effects of the CARE Act, and more generally, to design, test and evaluate care transitions throughout the health care continuum among older Latinos and their caregivers. These efforts are critical and may provide a blueprint for providing high quality and cost-effective care for other vulnerable and immigrant populations. However, recruiting Latino individuals for research remains a challenge. Latinos remain underrepresented in Alzheimer’s disease and caregiver research; they currently represent only 1% of clinical trial participants.
Ensuring that policy is evidence-based, and one that includes and reflects the growing, multicultural population in the United States, should be an important public health priority and is essential to eliminating health disparities.