Caregiving and the Increased Risk of Alzheimer’s in Latinos

Addressing Cost, Family Caregivers, Resources, Risks, and Prevention

Latino Family Caregivers for Dementia
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Latinos are significantly more likely to develop Alzheimer's disease, with research placing that risk at one and a half times to more than twice that of non-Latino whites. Unless the trend is reversed, the number of Latinos with Alzheimer's is projected to increase dramatically, ranging from less than 400,000 currently to over one million by 2030. These numbers significantly affect the Latino population, and the cost and challenge of caregiving (often within families instead of at a facility) is high.

Historically, Latinos have been less likely to use formal care systems such as nursing homes or assisted living centers. Instead, multi-generational caring for one's older family members is more typical. This is by choice for many Latinos, but for others, it represents a lack of access to care options, resources, and services that are available to support those with Alzheimer's and their caregivers.

Why Is the Risk of Dementia Rising for Latinos?

Researchers believe that one factor behind the increased numbers of Latinos with Alzheimer's disease is an increase in Latinos with diabetes. Type 2 diabetes is on the rise in Latinos; from 1997 to 2010, there was a 60 percent increase.

Diabetes has been strongly tied to an increased risk of Alzheimer's disease, so much so that some researchers have called it type 3 diabetes. The rate of diabetes for Latinos is approximately twice that of non-Latino whites, according to the American Diabetes Association.

Another factor related to dementia risk is cardiovascular health, which refers to the health and functioning of the heart and blood vessels. Latinos have a higher prevalence of heart and blood pressure problems, both of which have been associated with a higher risk of Alzheimer's disease and other kinds of dementia, including vascular dementia.

Life expectancy is also increasing for Latinos. While increased life expectancy is a positive indicator of general health, it also increases the likelihood of dementia since risk increases with age.

Challenges for Latinos With Dementia

Latinos face several challenges in coping with Alzheimer's. They include the following:

Clinical Trial Representation

Latinos are underrepresented in clinical trials for new medications and treatment approaches. Participating in clinical trials is important because the research needs to be applicable to multiple groups of people, including Latinos who have a higher risk of dementia.

Screening & Diagnosis

Latinos and other ethnic minorities are less likely to be screened and diagnosed early enough in the disease to benefit from most treatment options.

Physicians & Medical Professionals

Research has shown that nonwhite physicians and medical professionals are underrepresented, particularly in the fields of gerontology and research. This may make Latinos less likely to seek medical evaluation or participate in research studies.

Access to Preventative Healthcare

As with other ethnic minorities who experience a higher risk for Alzheimer's disease, access to preventative resources and awareness about the disease may be limited.

Some Latinos (along with other groups) lack adequate health insurance, which often leads to more of a reactive approach (responding when problems develop) rather than a proactive approach (working to prevent those problems).

Financial Resources

Financially, those living with Alzheimer's disease and their caregivers are often affected negatively—due to high costs of care and lost income related to time away from work or from medical bills. Some Latinos lack retirement savings or social security benefits as well, compounding the problem.

Language

Limited English proficiency hinders some Latinos from learning about Alzheimer's and accessing resources and services that are available in their community.

While there are many community resources for Alzheimer's and other types of dementia, researchers have found that many Latinos are not aware of their presence and do not know how to access them.

The Role of Family Caregivers

Latino family caregivers, when compared to non-Latino groups, spend more hours each week in providing care to their loved one, and that caregiving often consists of more challenging, intense tasks.

Many Latino caregivers live with their loved one for whom they are caring. Seventy percent of Latinos feel it would be shameful to their families if they did not provide this care.

While Latino caregivers vary, the average Latino caregiver is a female in her 40s who spends more than 30 hours a week providing help with activities of daily living (ADLs) and independent activities of daily living (IADLs). She also tends to work a job outside of her home for more than 30 hours a week. Her income tends to be below the national average.

When compared to non-Latino whites, Latinos typically report a high obligation to care for family members, as do Asian-Americans and African Americans. Researchers noted that the expectation of this role is very strong, so much so that, for some families, not fulfilling this role of caregiver would risk fracturing the family relationship.

Family Caregivers vs. Facility Care

While there is not much formal research available, informal anecdotal evidence suggests that some Latino millennials (those born between 1977 and 1995) may struggle with the expectation of being the family caregiver, and instead prefer to use community services and facilities. This may be related to an increased awareness of the services available for their loved one, as well as their changing expectations of their role in their family.

These changing expectations can cause potential conflict in Latino families, as one side believes that the family member is clearly the best caregiver and has the assumption that they will provide that care, and the other side believes there are professional services and resources that might better meet their loved one's needs.

Talking About Care Choices

As with anyone who needs care, the challenge lies in discussing these needs with your loved one and your family, both of whom may be resisting this discussion. It's normal to try to avoid things that make you uncomfortable, but facing these challenges with love, gentleness, and truth can help sort through these decisions.

There is no "one size fits all" for the format of this discussion, but coming prepared with a list of options and services available, as well as with an idea of how much help each family member is able and willing to provide, can help. Repeatedly emphasizing that everyone has the same goal, which is the quality of life and care of the one who needs help, can lower defenses.

Finally, remember that if a clear consensus is not reached, you can try something for a specific amount of time and set a date on the calendar to re-evaluate it. Often, a compromise between options can be reached.

Proactive Next Steps

The knowledge of an increased risk for Latinos and other ethnic minorities should trigger more cognitive impairment screenings, education about risk reduction strategies including physical activity, a healthy diet, and mental activity, and the inclusion of strategies that address this health disparity in federal and state disease action plans, like:

  • Bilingual Staff: Alzheimer's advocacy groups should seek bilingual or Spanish-speaking staff to assist in disseminating information and connecting with the Latino population.
  • Clinical Trial Recruitment: Researchers conducting clinical trials should continue to work on recruiting cultural minority members, including Latinos and African-Americans.
  • Translation of Educational Resources: Translating resources into Spanish should be a priority, ensuring that the wording chosen and the images used are culturally competent. Be sure that the resources are available both online and in paper format, as the older generation might not seek information online.
  • Increased Awareness: Physicians, other care providers, those making governmental policy, and researchers should become informed about the increased risk of Alzheimer's and other types of dementia for Latinos and other minority groups.

A Word From Verywell

Alzheimer's and other dementias affect people from every background, but the increase of Latinos with Alzheimer's has been called a "tsunami" due to the projected health care needs and financial costs associated with this development.

Calling it a "tsunami" implies that it may be devastating for both Latinos and those around them, and that it could—in essence—catch us unprepared if we're not paying attention. Thus, responding with the appropriate next steps to advocate for Latinos with Alzheimer's is simultaneously compassionate, medically appropriate, morally right, and financially necessary.

Sources:

Alzheimer's Association. Latinos and Alzheimer's. http://www.alz.org/espanol/about/latinos_and_alzheimers.asp

Gallegos, M. Alzheimer’s Outreach Best Practices Guide for the Latino Community

International Scholarly Research Notices. Culture, Caregiving, and Health: Exploring the Influence of Culture on Family Caregiver Experiences. 26 March 2014.

National Alliance for Caregiving & AARP. Caregiver Profile: The Hispanic/Latino Caregiver.

National Hispanic Council on Aging. Executive Summary: Attitudes, Level of Stigma, and Level of Knowledge About Alzheimer’s Disease Among Hispanic Elderly Adults and Caregivers, and Alzheimer’s-Related Challenges for Caregivers.

Wu, S., Vega, W., Resendez, J. & Haomiao, J. Latinos and Alzheimer's Disease: New Numbers Behind the Crisis.

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