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Family Caregivers: an Often Overlooked Subgroup

By Dr. Yanira Cruz, President and CEO of the National Hispanic Council on Aging

In 2015 an estimated 34.2 million Americans provided unpaid care for an adult aged 50 or older. The Caregiving in the U.S. 2015 Report, conducted by AARP and the National Alliance for Caregiving (NAC), found that the prevalence of caregiving was higher in Hispanics when compared to other racial/ethnic groups. Also, the results of the report show that Hispanic caregivers spend almost 32 hours per week caring for a loved one. This commitment stems from the importance that is placed on family in the Latino culture.

The report also found that the health and wellbeing of these family caregivers are often compromised because of the high demands of their roles. Caregivers who worked higher hours were more likely to describe their health as fair or poor compared to their lower-hour counterparts. Many times, these higher-hour caregivers find it difficult to balance employment, and other household responsibilities such as children, when they are the sole caregivers in the home. Family caregivers often experience depression and isolation, as well as conflicts in their jobs, financial problems and other issues that affect their mental and physical wellbeing.

Family caregivers who care for individuals with certain illnesses such as Alzheimer’s or different types of cancer often find it to be much more emotionally stressful than other types of caregiving. A report, from the National Alliance for Caregiving in partnership with the National Cancer Institute and the Cancer Support Community found that 50% of cancer caregivers feel “highly stressed, and four in ten report that they need help managing emotional and physical stress. This could be a consequence of the numerous hours of care these caregivers provide. Cancer caregivers, on average spend more than 32 hours a week providing care and one-third of them provide care for 40 hours or more a week. For these caregivers, the responsibilities are much more intense, as many of them find themselves conducting medical tasks for their loved ones. The report found that more than four in ten of cancer caregivers provide help with medical and nursing tasks without any prior training.

November is celebrated as National Family Caregivers Month. It is a time to recognize the hard work that day in and day out these individuals do to fulfill their vital roles in the lives of their loved ones. The National Hispanic Council on Aging would like to recognize those individuals and thank them for everything that they do to ensure that older adults in our communities are well taken care of.

The National Hispanic Council on Aging found in its annual report State of Hispanic Older Adults: Insights from the Field, that Hispanic informal caregivers often struggle to find the information and support that they need to assist them in their caregiving roles, which often contributes to their levels of stress and poor health. In an effort to find lasting solutions that can help these caregivers receive the support they so desperately need, NHCOA is working on new initiatives with the support of AARP, which will create resources for those who find themselves without answers.

Below you can find some resources both in English and Spanish developed by AARP that can help family caregivers prepare a care plan:

Prepare to Care: A Planning Guide for families

Cuidando a los Nuestros: Una Guía de Planificación para la Familia


New Resource Guide from WHCoA: Federal Resources for Caregivers

One of the most important and rewarding jobs a person could have is to be a caregiver. Yet, caregivers often feel alone and overwhelmed, especially those who take care of their parents, grandparents, spouses or siblings.

This is why the White House Conference on Aging has compiled a list of federal resources for caregivers from the following agencies:

  • Administration for Community Living (ACL)
  • Centers for Medicare & Medicaid Services (CMS)
  • Centers for Disease Control and Prevention (CDC)
  • Substance Abuse and Mental Health Services Administration (SAMHSA)
  • National Institutes of Health (NIH)
  • HHS Office of Women’s Health (OWH)
  • HHS Office of Disease Prevention and Health Promotion
  • U.S. Department of Housing and Urban Development (HUD)
  • U.S. Department of Labor (DOL)
  • Office of Personnel Management (OPM)
  • Social Security Administration
  • U.S. Department of Vetarns Affairs (VA)

Check out this comprehensive list of resources here.

5 Common Challenges to Conducting Medicare Fraud Outreach Among Hispanic Older Adults

In order to get Hispanic older adults to report Medicare fraud, we must first be able to reach them effectively. Detection is the best way for seniors to protect themselves from scams and fraud. This is why breaking away at, and tearing down barriers, that prevent them from receiving reliable, trustworthy information regarding Medicare fraud is key.

Here is a look at 5 common challenges or barriers to conducting effective Medicare fraud outreach among Hispanic older adults and tips to address each one. 

Language barriers

Most Hispanic older adults speak more Spanish than English. They rely on their children, grandchildren, or friends to understand documents or other information they may encounter on a daily basis. The inability to fully understand causes many to feel frustrated and give up. While Latino seniors may be more comfortable speaking Spanish, they may encounter difficulties reading and writing. This is due to low levels of education and the reliance on jargon, slang and “Spanglish” (the combined usage of Spanish and English words to communicate). Therefore, even if the information is written in Spanish, many might have a hard time understanding certain wording and phrases they are not familiar with.

Reaching Hispanic older adults through a variety of culturally and linguistically appropriate communication channels is critical to eliminate the language barrier (i.e., local Spanish language radio PSAs, local Spanish language TV interviews). 


The propagation of myths within the community is frequent and wide-scaled, ranging from old wives tales to urban legends. Older adults, who are mostly homebound and have little contact with the outside world, are especially susceptible to blending facts and information with myths and taboos. And, even if they receive correct information, it can be difficult and confusing to retain. As we age, being introduced to new concepts and facts can be overwhelming, especially topics such as Medicare, which is complex in nature.

Constant reinforcement is key to fighting misinformation and is best achieved through one-on-one and group discussions in culturally and linguistically appropriate settings (i.e., community centers and places of worship).

Difficulty Navigating the Medicare System

These days technology plays a big role in our  healthcare system, especially the enrollment process. For an older adult who is used to handwritten paperwork and face-to-face interaction, it is difficult — and seemingly impossible to them— to use the internet and virtual assistance to process an application, enroll or report fraud. While online services are great and helpful to many, Latino seniors are a generation behind in terms of technology and access.

For Hispanic older adults to use the Internet to access and manage their Medicare accounts, in-person bilingual assistance is critical. 


Seniors may not always go to a senior center or community center. In fact, if they do not have caregivers or family to take them, or go with them. They may not leave their home at all. As they reach their golden years, most of them stop driving and cannot walk, bike, or take public transportation as easily as when they were younger. This causes isolation and for the most part prevents them from receiving valuable information about Medicare and Medicare fraud. Even when they attend a senior center or community center, most times the seniors do not have the opportunity to attend informative events or fairs due to lack of transportation.

Sending culturally sensitive bilingual volunteers to make home visits or go to places Hispanic older adults frequent (places of worship, grocery stores, etc) can help bridge the isolation gap many Latino seniors experience as they age. 


The National Hispanic SMP (NHSMP), an off-shoot of the Senior Medicare Patrol (SMP) initiative, is the only Medicare fraud prevention program that uses culturally and linguistically appropriate tools and resources to close the gap in Medicare fraud education among Hispanic older adults, their families, and caregivers. The NHSMP program was launched in Rio Grande Valley, Texas in 2005 and expanded into southern Florida in mid-2011. NHSMP also provides technical assistance to organizations working with older adult populations, so they can more effectively expand their reach to Hispanic seniors, while meeting the demands of our increasingly diverse older adult population. 

Connecting the Dots: Equal Pay, Caregiving and Paid Sick Leave

98 days. A little over 3 months. That is how many additional days it takes for women to earn the same as men in the previous year. For African American women and Latinas, it would take even longer.

National Equal Pay Day Graphic

One might wonder why in 2014 we continue to experience such a noticeable wage gap among genders. The answer is quite simple: women are not just workers. They are also primary caregivers. In fact, about two-thirds of Hispanic caregivers are Latinas.

Whenever a women needs to take time off to give birth or care for a sick child, an elderly loved one, or herself, her ability to remain employed, get promoted, and create a name for herself in her field is compromised, especially if her state doesn’t have paid sick leave laws.

This is particularly true among Hispanic women, who are often the heart of their households. In a cultural context, Latinas grow up being cared for by women, and grow to fulfill that role with younger generations of family members, whether they are children, nieces and nephews, brothers and sisters, or grandchildren.

As we commemorate National Equal Pay Day, it is crucial that we work toward sound, common sense public policy solutions that will reduce, and eventually close, the gender wage gap, such as the Paycheck Fairness Act (H.R. 377/S. 84).

We also need legislation that helps all working Americans successfully balance and maintain their work and home lives, such as:

  • Paid family and medical leave insurance modeled on successful state programs in California and New Jersey;
  • Expanded access to the Family Medical Leave Act (FMLA) for more workers for more reasons; and





7 Medicare Fraud Red Flags to Avoid

Data shows that the populations most vulnerable to fraud are those that face multiple barriers, such as poverty, low levels of education, little or no English skills, and a lack of access to culturally and linguistically competent resources. These factors apply to Hispanic older adults and result in them being less likely to become aware of, or not know what to do, if they are targeted for health care fraud. Everyone — Medicare beneficiary or not — should care about this because at the individual level, health care fraud can cause people to receive lower quality care.

On a larger scale fraud, waste, and abuse in Medicare and other forms of health insurance is a drain on health care consumers: billions of dollars are lost each year due to health care fraud. This drives up the cost health care and health insurance for everyone. If you are a caregiver or live with your parents or grandparents, here are 7 red flags that you should look out for:

Be aware of door-to-door sales persons or telemarketers. RED FLAG: Being insistently and repeatedly offered services or products your loved one doesn’t need. (Scammers tend to target people with arthritis, diabetes or sleeping problems.)

Be aware of the services and products Medicare covers. RED FLAG: Providers that charge co-pays on clinical lab tests or Medicare-covered preventive services such as PAP smears, health screenings, or flu shots. (Medicare covers certain preventive and screening services.)

Be aware of high-priced services or diagnostic tests. RED FLAG: Pressure and scare tactics from a service provider. (If you don’t take this test, you will lose your benefits.)

Medicare doesn’t sell anything. Period. RED FLAG: A “Medicare sales person” who calls your house, sends an e-mail, or knocks on your door.

Medicare never contacts its beneficiaries to confirm or verify their information. RED FLAG: Receiving a call, house visit, or e-mail asking to confirm or verify Medicare information. (Medicare cards should be treated the same way as a credit card or Social Security number.)

Be aware of “free” products or services — nothing is free. (This includes meals and transportation.) RED FLAG: Sales persons offering a “free” product or service in exchange for your loved one’s Medicare number.

Be aware of anyone other than a physician or medical professional asking to review your loved ones’ medical records or recommend services. RED FLAG: Only your loved one’s doctor should have access to and review his or her records and make medical recommendations.

And, the golden rule:

Always review your loved one’s billing Medicare Summary Notice (MSN) and Part D Explanation of Benefits for incorrect charges. This could mean being charged for a service or product that wasn’t received; being billed twice for the same service or product; being charged for services or products that were not ordered by the beneficiary’s doctor.

If you suspect your loved one is a victim of Medicare fraud, contact the National Hispanic SMP for free assistance in Spanish: 1-866-488-7379.

Leaves That Pay and the State of the Union

By Jason Coates, Public Policy Associate

In this year’s State of the Union Address, social media commentators were abuzz when President Obama said, “A mother deserves a day off to care for a sick child or a sick parent without running into hardship.  And you know what, a father does too.”  The National Hispanic Council on Aging (NHCOA) agrees with the President because we believe all workers should have the ability to take paid time off to recover from an illness, care for a loved one or bond with a newborn baby.

The fact is people across the country need leaves that pay because everyone gets sick at some point.  However, millions of workers (39% according to the Bureau of Labor Statistics) aren’t able to take a single paid day off to care for their health. For NHCOA, this is alarming because the number of working family caregivers (people who take care of an elderly family member) is increasing. Just like any worker, these caregivers would benefit from paid sick days and paid family leave insurance.

Leaves that pay also provide economic security. According to the Employee Benefit Research Institute, 19% of retirees entered retirement earlier than planned to care for a family member or spouse. If he or she was Hispanic, early retirement represents less time to be able to save money as Latinos earn lower than average incomes and experience higher rates of poverty. For people with low incomes and without leaves that pay, illness forces them to choose between their family and their economic security.

Businesses also benefit from leaves that pay because they increase loyalty among workers and decrease turnover.  Decreased turnover means that businesses face fewer of the costs associated with replacing experienced employees with new workers.  The health benefits that workers receive from leaves that pay extend to employers as well; when people are able to take time off to care for their health, they are more likely to treat minor health issues before they become expensive conditions.

NHCOA is working to tell the stories of people that are in particular need of leaves that pay.  One of the people that NHCOA serves, Carlos, lost his job after taking his wife to the emergency room during his scheduled work shift.  When asked why he chose to care for his wife rather than go to work, he said he did it because he “wanted to be a good husband and father.” Should we have to sacrifice our ability to care for our own to make a paycheck? Should we have to choose between our families and our job?

Congress is currently considering bills on paid sick days and family and medical leave insurance.  The bills, the Healthy Families Act (paid sick days) and the FAMILY Act (paid family and medical leave insurance), would help eliminate the choice people face between their health and family and their economic security.  NHCOA fully supports these initiatives because being a good worker should not come at the expense of caring for one’s family and health.

NHCOA Hosts Capitol Hill Briefing to Announce the Results of a New Study on Alzheimer’s Disease in the Hispanic Community

Washington, DC — The National Hispanic Council on Aging (NHCOA) – the leading national organization working to improve the lives of Hispanic older adults, their families, and caregivers – hosted a Capitol Hill briefing on Tuesday, May 7, to release the findings of its new study that assesses Latino older adults’ and Latino caregivers’ attitudes and knowledge about Alzheimer’s disease.

The briefing provided an opportunity to hear from various experts on the impact Alzheimer’s disease has on the lives of patients and caregivers. Congressman Raul Ruiz (D-CA) opened his remarks by sharing the health care disparities he observed while working as a doctor in underserved communities. While emphasizing the importance of taking care of one’s older family members, he highlighted the need to create more programs and facilities that are tailored to Latinos dealing with Alzheimer’s. In addition, he mentioned the need to provide more geriatric physicians to serve the underserved communities and establish more home care options, as well as nurse care options, in which Latino older adults can live with their families.

“I applaud the National Hispanic Council on Aging for their leadership to improve the lives of our Latino seniors, their families, and caregivers,” said Rep. Ruiz. “As an Emergency Room physician and the only Latino doctor in Congress, I understand the unique challenges facing the aging Latino population and the critical need to provide high-quality services to this community. That includes adequate research funding for diseases like Alzheimer’s, and I’m proud of the National Hispanic Council on Aging for their outstanding work to highlight the importance of this issue.”

Dr. Donald Moulds from the U.S. Department of Health and Human Services, spoke about the National Plan to Address Alzheimer’s Disease. He stressed that the effects of Alzheimer’s can be devastating for older adults and their families and there is room for improvement in how we treat people in this country suffering with dementia. “We need educational outreach that targets caregivers so they can better help individuals with Alzheimer’s,” stated Dr. Moulds.

“We have a National Plan to Address Alzheimer’s Disease because the Obama administration is committed to confronting Alzheimer’s and addressing every aspect of what it is to confront Alzheimer’s, from research to improving quality of care, to expanding support for people with Alzheimers and caregivers, to increasing public awareness. We’ve also set an ambitious goal to prevent and effectively treat Alzheimer’s disease by 2025, and not long ago, the fight against Alzheimer’s lacked a high-level national focus and  a consistent, coordinated partnership with the nation’s Alzheimer’s community. We’ve made an historic investment of funds, a commitment to  prevention and treatment, and we’re building partnerships among government, researchers, advocates, providers and the public that will fully bring Alzheimer’s into the national conscience,” added Dr. Moulds.

Mr. Mark Bayer, Chief of Staff to Congressman Edward Markey (D-MA), spoke about their work on the Congressional Task Force on Alzheimer’s Disease. By 2050 it is expected that the number of people afflicted with Alzheimer’s will triple, and by this time we will spend more on this disease than on national defense if we don’t find a cure, stated Mr. Bayer.

“As co-chair of the Congressional Alzheimer’s Task Force and someone whose family has been touched by this devastating disease, I commend NHCOA for highlighting the challenges facing Alzheimer’s patients and caregivers in the Hispanic community. It is critical that families dealing with this disease have access to culturally and linguistically appropriate resources, and I look forward to partnering with NHCOA as we work to better the lives of the 5 million Alzheimer’s patients nationwide,” said Congressman Ed Markey, co-chair of the Congressional Bi-Partisan Alzheimer’s Task Force.

The study found that although Latino older adults may be willing to be screened for Alzheimer’s, their decision was affected by factors, such as poverty, fear, and language barriers. Lack of health insurance, knowledge, and access to healthcare also  affect their decision.  Furthermore, the study confirmed a severe lack of knowledge in the Hispanic community about Alzheimer’s. Most participants  attributed the the early symptoms of Alzheimer’s to the aging process and often confused Alzheimer’s with other unrelated diseases. As a result of the study’s findings, NHCOA determined that there is a need to expand research on Alzheimer’s in Hispanics and develop of a campaign to increase knowledge and provide resources to caregivers.

Alzheimer’s disease is a particularly serious problem for Hispanic older adults and caregivers. Latinos are 1.5 times more likely to develop Alzheimer’s disease than non-Hispanic whites; however, they are less likely to be diagnosed (Alzheimer’s Association). As a result, data from the Alzheimer’s Association estimates that between 200,000 – 365,000 Hispanic older adults have Alzheimer’s disease or another form of dementia. Hispanics also have an increased risk for Alzheimer’s due to a higher rate of cardiovascular risk factors, such as diabetes high blood pressure, and high cholesterol.

Although Hispanics are disproportionately affected by Alzheimer’s disease, health care providers interviewed for the study were almost unanimous in their assertion that there are no culturally and linguistically relevant materials on Alzheimer’s for Latinos. Caregivers confirmed this during their testimonies by sharing their personal experiences with caring for Hispanic older adults with Alzheimer’s.

“The NHCOA study brings attention to a growing public health challenge facing our society. Our study findings underscore the importance of developing culturally and linguistically appropriate strategies to increase the knowledge about Alzheimer’s disease among Hispanics and connect caregivers to resources that help them cope with their caregiver role as they care for their loved ones with Alzheimer’s,” said Dr. Yanira Cruz, President and CEO of NHCOA, who highlighted the findings of the study and the appropriate tools that need to be developed to serve Hispanics with the disease.

Margarita Navas, a caregiver, recalled that her mother’s Alzheimer’s screening had to be conducted through her because her mother did not speak English and the doctor did not have access to diagnostic tools in Spanish.

“Caring for my Mother with Alzheimer’s has changed my life dramatically. It has helped me to appreciate her and be more sensitive to older adults and their needs. While I have had to make many sacrifices to take care of her, I am comforted knowing that I am caring for the person who took care of me. Also Alzheimer’s changes the roles in families. Children become parents in every way. I became my mother’s mom since late 2006,” stated Ms. Navas.

Maria Teresa Vasquez, a registered nurse and caregiver, echoed similar difficulties in caring for her mother with Alzheimer’s. “I needed resources to help care for my mother,” said Ms. Vasquez. “As I was searching, it hit me: nothing talked about faith, familia (family), and my culture.”

Other testimonies included Astrid Casoni, a caregiver provider from Mary’s Center.

To view the Executive Summary of 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, please click here.

For information on the National Plan to Address Alzheimer’s Disease, click here.

For information about the Congressional Task Force on Alzheimer’s Disease, click here.


Make 2013 a year for ensuring workers and caregivers have paid family leave

Another of NHCOA’s resolutions in 2013 is ensuring that caregivers and workers have paid family leave because no one should have to choose between their job and their family.

The ability to take paid time off of work to recover from an illness or care for a loved one is one important way to stop the spread of diseases. However, those who need paid time off the most don’t necessarily get this benefit from their employer.
Continue reading “Make 2013 a year for ensuring workers and caregivers have paid family leave”

Paid Family Leave: When Getting the Flu Equals Losing Wages

By Jason Coates, Public Policy Associate

As flu season approaches, policies that protect the public health are more important than ever. The ability to take paid time off of work to recover from an illness or care for a loved one is one important way to stop the spread of disease during flu season. However, those who need paid time off the most don’t necessarily get this benefit from their employer. That is why NHCOA works on a paid family leave efforts to support healthy communities and economic security.

Retail and restaurant workers are more likely to not have paid leave, and this puts the public at risk. Flu season, combined with crowded stores and restaurants, means that workers have contact with large crowds, increasing the chance of transmitting any illness they may have. Although most employers will allow workers to take time off to recover from illness, a large number of employers do not pay workers during this period. This means  many workers simply cannot afford to take time off even when they are ill.

Attending work while sick is a widespread problem. Office supply chain store Staples Inc. conducted a national survey of workers which found that nearly 80% of employees come to work sick. Moreover, over 40% of private-sector workers do not have any access to paid sick days. Although they may be able to take time off to recover from an illness, they will not be able to recover lost wages during their illness. Therefore, workers without paid family leave are faced with choosing between their health and their income.

The bottom line is that while there are many U.S. workers who do have paid family leave, there are other who don’t. At first glance, this may not seem to matter. However, ensuring all workers have leaves that pay benefits can potentially improve public health and reduce health care spending. When workers, especially those in close contact with the public, are able to stay home to recover from their illness, the spread of infection is limited. Containing the spread of illnesses and quickly treating them helps the health care system avoid large costs in the long run. Further, paid leave laws also allow workers to take charge of their health by managing minor health problems before they become serious or chronic.

That is why NHCOA is working to connect segments of the Hispanic communities with other stakeholders to advocate for paid family leave policies at the state and local level. Leaves that pay laws are good for all parties involved: workers, the health care system, and the public in general.

Hispanic Workers are Less Likely to Know About Paid Family Leaves Laws Despite Needing them the Most

Washington, DC— The National Hispanic Council on Aging (NHCOA)— the leading national organization working to improve the lives of Hispanic older adults, their families, and caregivers—  has been working across states to raise awareness and empower Latino workers and older adults to advocate for paid family leave laws at the local and state level. Paid family leave policies are the best way to ensure that workers don’t have to choose between their family and their job. Job security and steady wages are crucial for the Hispanic community as many workers are also caregivers and heads of households.

Continue reading “Hispanic Workers are Less Likely to Know About Paid Family Leaves Laws Despite Needing them the Most”