New Tool: Clinical Trial Tool
We’ve been tracking recent articles, reports and statistics relevant to caregiving. We hope you find these useful.
Here’s a great article by elder lawyers Lamson & Cutner. “Six major risks arising from the growing crises in dementia care.” It is especially relevant to New York residents who need to learn more about Medicaid Community Care vs. Medicaid Nursing Home care.
The National Alzheimer’s Association has just released the 2017 Alzheimer’s Disease Facts and Figures which includes a special report on the next frontier of Alzheimer’s research.
To access the full report, click on the following link: http://www.alz.org/facts/overview.asp?type=alzchptfooter
To access the one page fact sheet, click on the following link: http://www.alz.org/documents_custom/2017-facts2017_infographic.pdf
To access the one page NYS statistics fact sheet, click on the following link: http://www.alz.org/documents_custom/facts_2017/statesheet_newyork.pdf?type=interior_map&facts=undefined&facts=facts
2016 Centers for Disease Control 2016 Alzheimer’s At a Glance: http://www.cdc.gov/chronicdisease/resources/publications/aag/healthy-aging.ht
If someone in my family has had #Alzheimers, will I have it, too? Click the link to download a pdf Understanding Alzheimer’s Genes: Know Your Family History
An article in the March 9th 2016 New York Times reports that a 2013 survey of nearly 500 caregivers by the Manhattan borough president’s office and the New York City chapter of the Alzheimer’s Association found a “’desperate’ need for services like home care and respite programs to relieve those giving unpaid care”. PSS is proud to be at the forefront of those serving this growing need, offering support to NYC’s caregivers for over a decade.
The first ever AgingCare.com State of Caregiving report uses the results of an online survey of more than 3,300 family caregivers to dive deep into the demographics, financial circumstances, living situations and support systems used by people caring for an aging loved one. This analysis offers unprecedented information about this vitally important group of men and women. “As Americans’ average life expectancy creeps ever upward, the need for family members to step in and take care of their aging loved ones will only increase. Currently, 36 percent of U.S. adults provide some kind of caregiving assistance for an older relative, according to the Pew Research Center.” AgingCare.com’s State of Caregiving 2015 report supports PSS’ position that one of the most important services we can provide is support to those who care for an elderly adult. Our Circle of Care has grown and continue to grow to fill these vital needs.
The NYC Department for the Aging’s website is a vital resource for New York City caregivers.
The Family Caregivers Alliance Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers, in both English and Spanish. Check out their Fact Sheets, especially their new Caregiving 101: On Being a Caregivers.
E-book from AgingCare.com Family Caring for Family — Navigating the landscape of caring for your elderly loved one; and thriving along the way.
SharetheCaregiving’s blog Share the Care provides resources for caregivers that will help prevent burnout, stress, isolation, depression and economic hardship.
A Place for Mom’s Blog is a great source of information on caregiving, Medicare, and dementia, among other issues.
Together in This covers general caregiver topics and emphasizes solutions for Alzheimer’s disease.
Integrity Senior Services provide in-home mental health counseling to older adults and caregivers throughout the 5 boroughs. Visit their website to conduct a referral.
National Council on Hispanic Aging 2015 report http://www.nhcoa.org/wp-content/uploads/2015/11/NHCOA-Status-of-HOA-Final-10-27-15.pdf
- HIGHLIGHTS OF REPORT FINDINGS The findings of this report and the status of Hispanic older adults are critically important to the overall U.S. population. With the baby boomer population entering retirement, the U.S. population is quickly aging. Hispanics are the fastest-growing segment of this aging population. In 2013, the Hispanic older adult population (those 60 years and older) numbered 3.6 million and comprised 8 percent of the U.S. population 60 and older. By 2050, the older Hispanic population is projected to account for 19.8 percent of the older U.S. population, and to number more than 17 million. By 2019, the Hispanic population aged 65 and older is projected to be the largest ethnically diverse community in this age group in the U.S. Over the next 40 years, the number of Hispanics aged 65 and older is expected to double, while the number of those aged 85 and older is expected to triple. Following are highlights of the report as well as the recommendations.
- Overall themes There are a number of themes that emerged from NHCOA’s research. These include the gap between service providers and the nation’s Hispanic older adults, the determination of older adults to continue working, and their vulnerability.
- The Disconnect Between Service Providers and Hispanic Older Adults and Lack of Access to Benefits and Programs A theme that emerged repeatedly, across all research methods and all NHCOA forums was Hispanic older adults’ lack of access to federal, state, and local programs. This is a critical issue because these programs can address some of the most difficult challenges Hispanic older adults face, including access to retirement planning; access to long-term services and supports, such as healthcare and nutrition programs; access to necessary healthcare and medication benefits; and access to information that would protect them from financial abuse and fraud. There are a number of underlying factors that prevent access to programs. At times, there is simply a lack of available services, such as subsidized housing stock. Generally, however, the underlying factors are a combination of wide cultural, linguistic, and age-related gaps between Hispanic older adults and frontline service providers and counselors. Hispanic older adults are often unaware of programs that could help them. They feel socially isolated and forgotten. When they do try to access programs, they are often unsuccessful. They are unable to bridge knowledge, cultural, and linguistic gaps even when service providers speak Spanish, and they do not know how to access programs and find answers to their questions online. Many program applications are migrating to online enrollment, which is challenging for Hispanic older adults, especially for those who have never used online systems and do not have Internet access at home. In addition, U.S. business culture, which relies on efficiency, often unknowingly communicates a lack of respect for Hispanic older adults. Often, service providers are unaware that Hispanic older adults 8 NHCOA Status of Hispanic Older Adults 2015 with low levels of formal education do not understand basic concepts of U.S. systems, (for example, regarding healthcare enrollment, Hispanic older adults often do not understand concepts such as premiums or deductibles.) Finally, older adults require more repetition and more time to learn new concepts, which service providers must accommodate. One Los Angeles forum participant described the disconnect as follows, “Service providers don’t understand our beliefs and traditions. Understanding our culture is the only way they can approach us and know how to help us.”
- Desire to Re-Enter the Workforce to Achieve Economic Security A remarkable theme that consistently surfaced from the community is the request for job training. Hispanic older adults hope to return to work or start small businesses to fill in what they lack in retirement income. This request highlights the Hispanic community’s work ethic. Among NHCOA survey participants, 25 percent said they were seeking to work fulltime, even though their median age was 73.
- Desire for Younger Generations to Be Better Prepared Financially for Retirement and Healthier. Another theme that consistently emerged was older adults’ concern for the younger generation to learn how to plan for retirement. They insisted that children and working adults should have access to information and training that would help them to save for retirement, manage their budget, and make healthy choices. For example, a Miami forum participant shared the following about the importance of readying younger generations for retirement security, “Hispanic families don’t have favorable conditions to save money as many of them can barely afford their basic needs… For more than 10 years, we have been listening to politicians say that we are in the middle of an economic crisis. Therefore, we need to create programs that address the limited job market and offer opportunities of upward mobility for new generations, so they can save money for retirement and live better lives.”
- Extreme Vulnerability to Financial Exploitation, Abuse and Neglect Extreme vulnerability to financial exploitation, abuse, and neglect emerged as an important theme. Hispanic older adults have low levels of formal education, combined with social isolation and low levels of English proficiency. These factors make them easy targets for unscrupulous individuals attempting to deceive them. They are vulnerable in other ways as well. Living month to month on low fixed incomes, Hispanic older adults are especially vulnerable to any change in their physical or financial status. A health challenge or the need to change their housing situation can spell disaster for their finances. For example, a brief hospitalization that is only 80 percent covered by Medicare can cause a Hispanic older adult who is just getting by financially to plummet into desperate straits, such that they could face hunger. A participant from Los Angeles forum described his vulnerability as follows: “My Social Security check is gone after two days when I pay rent, utilities, and some of my medicines.”
- Findings Aligning with the 2015 White House Conference on Aging Themes
- Retirement Security There are three major underlying factors feeding into the severe retirement insecurity among Hispanic older adults. The first is lack of retirement savings. Hispanic older adults are the leas tprepared group in the nation in terms of saving for retirement. This is partly because during their working years, Hispanics are often employed in jobs with low wages and low benefits, making access to pensions rare and saving for retirement difficult. It is also because Hispanics do not know or understand how to save for retirement. In fact, an ING report released in 2012 found that the most important reason that Hispanics do not have retirement savings is that they do not have knowledge about retirement savings options. Hispanic older adults are overwhelmingly dependent on Social Security, from which they receive, on average, lower benefits than non Hispanic whites. In effect, if they did not receive Social Security, the poverty rate for Hispanic older adults would be over 50 percent. During NHCOA’s community forums, participants consistently requested training and information about savings options. These calls for community education about retirement savings were especially revealing of the character of the Hispanic community, because Hispanic older adults were requesting these services for working adults, young adults, and even teenagers. They recognized that they themselves had missed the opportunity to save for their retirement, but were adamant that younger generations should be informed about available opportunities and effective strategies. The second factor causing retirement insecurity is the lack of access to affordable, quality housing. There is simply a lack of quality affordable housing stock in the U.S., especially in large metropolitan areas where the majority of Hispanic households live. Rental housing stock is in especially short supply. This results in Hispanic older adults living in substandard housing that takes up a high percentage of low fixed incomes, leaving little for health expenses, food, or clothing. In addition, Hispanic older adults often live in housing that lacks basic amenities necessary for older adults, such as elevators. Community feedback on housing was full of dire examples. According to community members, many Hispanic older adults live in vermin-filled apartments, or are homeless. Rents are too high, and the Hispanic community suffered more than any other population from the housing crash of 2008. Housing is a key factor in economic insecurity among Hispanic older adults. One participant from the Los Angeles forum described her housing situation as follows: “Three years ago, I applied to Section 8. At the moment, they told me that the waiting time was 12 years. I live in deplorable conditions and my house doesn’t have an air conditioner. During the hot season, I am forced to leave my house and stay at some friends’ houses. I’m 72 and I cannot wait 12 years for an affordable residence.” The third factor is lack of access to available programs that alleviate economic insecurity. For example, one of the most severe consequences of economic insecurity among Hispanic older adults is food insecurity. Nationwide almost one in four Hispanic households faces food insecurity, and yet among all seniors only 35 percent of those eligible benefit from the Supplemental Nutrition Assistance Program (SNAP). Hispanic seniors suffer from the highest levels of poverty of any U.S. older adult population, and high levels of food insecurity, yet they are not accessing programs that could help them live in greater security. Twenty-five percent of NHCOA survey participants were committed to working full-time to alleviate their financial insecurity, even though their median age was 73. Community forum participants described desperate situations of hunger and homelessness among Hispanic older adults. Moreover, they described difficulties in accessing social programs. These difficulties included experiencing long waits for service, a lack of knowledge about the availability of programs, and feeling lost and overwhelmed when trying to enroll in needed programs. Community forum participants recommended community-based outreach and education on available programs and individual assistance with enrollment. Even community programs providing food were sometimes inaccessible to older adults because these programs request monetary donations, which they cannot afford. Participants cited that even small payments sometimes requested at senior or community centers for meals were too much for their limited budgets.
- Long-Term Services and Supports Data show that the country lacks meaningful access to long-term services and supports for older adults who do not have sufficient savings to pay for them. Hispanic older adults, who generally do not have retirement savings, are dependent on informal family caregivers for longterm care. Although Hispanics have access to the Ombudsman Program, this has only limited practical application to their daily needs. Moreover, Hispanics have higher incidence of chronic disease, such as type 2 diabetes and Alzheimer’s disease, and live an average of two to three years longer than the larger population, necessitating longer-term services and supports. Survey findings showed that Hispanic older adults were often caught between living with family and family pressures that force them into other long-term care situations such as nursing homes. Community forum participants asked for more information about long-term services and supports that are available, and requested centralized hubs for this information in their communities. They also mentioned incidences of abuse and over-medication by caregivers in which Hispanic older adults were victims. Presumably, caregivers themselves have little support or knowledge about how to care for older adults and are overstressed, leading to some of these abuses. In short, long-term services and supports for older adults are desperately needed in the Hispanic community. One Miami forum participant described the need for long-term services and supports among seniors, “We live in the most powerful economically, politically, and military country in the world, so I don’t understand why we cannot have health insurance for life-time, from birth to death. Why we cannot eat three times per day?” She continued sharing her frustration about the difficulties older adults face including fraud and abandonment, “I came from a senior community where older adults go every day to hospitals and doctor’s appointments without feeling better. Seniors are not getting what they need. Seniors are marginalized and abandoned by their families. We need love and social activities… Depression is a big issue among Hispanic older adults in Miami. They are more vulnerable to compulsive behaviors, such as gambling or eating junk food. We feed our soul and fight physical illnesses when we go out to dance and talk to people.” c. Healthy Aging Hispanic older adults are living longer, but are not healthier. Hispanics live two to three years longer than the larger U.S. population, but they are more likely to suffer from chronic diseases. Foremost among the chronic diseases that they face disproportionately to the larger population are type 2 diabetes and Alzheimer’s disease. In addition, Hispanics are less likely to have health insurance and older adults are more likely to be entirely reliant on Medicare. Hispanic older adults are less likely to access preventive programs and services, which are necessary to promote good health and manage chronic disease. They often do not know how to navigate the U.S. medical system. This includes enrolling in Medicare, Medicare Part D, and Medicaid if they are eligible. In addition, Hispanics often face difficulties in communicating with their physicians or other healthcare providers. A surprising 9 percent of NHCOA survey participants had no health insurance at all. One volunteer at the Dallas Community Forum described the lack of knowledge among Hispanic seniors as follows: “We need to get seniors the right information. Unfortunately, a lot of Hispanic seniors don’t know about the existence of many health programs. We need to encourage them to look for the right information. I work for a non-profit organization and only 6 percent of our clients are Latinos. We need to start from there. We need to offer older adults clear and reliable information, so they can access available services.” Participants stressed the importance of promoting healthy behavior among younger generations to avoid chronic disease. They also discussed the financial burdens they faced in making Medicare co-payments. Community members recommended that younger members of their community take steps to preserve their health. d. Financial Exploitation, Abuse, and Neglect Although financial exploitation, abuse, and neglect are difficult to quantify, it is certain that Hispanic older adults are especially vulnerable. This is because Hispanic older adults typically have low levels of formal education and English literacy, and are often socially isolated. They are easy prey for scammers. One particular area in which Hispanic older adults fall victim is Medicare fraud, which bilks U.S. taxpayers out of tens of billions of dollars each year and often saddles individual victims with high healthcare bills. According to the survey results, Hispanic older adults who are victims of Medicare fraud are unlikely to report it. Community forum participants stressed that Hispanic older adults often do not recognize fraud, and when they do, they are afraid to report it, believing that they will face some sort of repercussions from healthcare providers, those perpetrating the fraud, or the federal government. Education about financial exploitation, abuse, and neglect is needed in the Hispanic community. One especially horrific story of neglect was shared by one of the Dallas forum participants, “I volunteer and serve seniors in my community. One day, I met a senior citizen who was missing a leg and needed prosthesis. He was desperate looking for help as he was suffering and in pain. He was told at the social agency that he was not eligible to receive the prosthesis because he was not working at the time. As a consequence, he tried to commit suicide several times throwing himself out of the wheelchair. Therefore, we propose the creation of a call center that offers personalized assistance and follows up on the reports of elder abuse and their needs.”
- SUMMARY AND RECOMMENDATIONS The findings of the following report are both inspiring and troubling. They are inspiring because they document the resilience of a highly vulnerable population. This population faces difficult circumstances but is determined to rise above them, if not for themselves, then for future generations. Older Hispanic adults consistently recommended greater education for working adults and young adults about retirement security, health, and financial abuse. When they are able, they are determined to work, and when they are not able to work, they are still determined to let their voices be heard. The findings are troubling because they represent significant human suffering and the breakdown of American values when it comes to the lives of U.S. seniors. Hispanic older adults have spent their lives contributing to their families and America’s success through labor and dedication to community. They have earned their enjoyment of their golden years, in security and health, guaranteed to long-term care, and free from financial victimization. Instead, they are facing severe retirement insecurity, hunger, and poor housing conditions. Their only opportunities to receive long-term care come at the expense of sacrifices on behalf of their family members. They suffer from poor health, including multiple chronic conditions, and they are vulnerable to financial exploitation and fraud. Improving the lives of our elders is a commitment all Americans embrace. Accordingly, NHCOA provides the following recommendations, based on the literature review, community input through the Community Forums, and the survey findings.
- Ensure that programs and benefits address the needs of the growing diverse aging population. Programs and benefits should be accessible to older adults with low levels of English proficiency and cultural and formal education gaps, with the goal of reducing the disparity of access to benefits for Hispanic older adults. This entails: a) Enforcing CLAS (Culturally and Linguistically Appropriate Services) Standards. Personnel must go beyond being simply bilingual to being linguistically and culturally appropriate. b) Bridging the digital divide. Enrollment methods must take into account low levels of computer literacy and the need for personalized and culturally and linguistically appropriate service. c) Promoting age sensitivity. Outreach and education strategies should seek out Hispanic older adults where they live and gather in a culturally, linguistically, and age-appropriate manner. d) Providing real access to information and assistance for Hispanic older adults who may have difficulties in accessing transportation. This includes the creation of a senior call center that diverse seniors could contact for information in their native language; the creation of a volunteer education program in which bilingual and bicultural volunteers help seniors access services and programs in their own communities; the creation of radio and TV programs to inform seniors about available programs and their eligibility or rights, in a culturally and linguistically appropriate manner; and the establishment of more community-based organizations and centers providing assistance in local communities.
- Bridge the information gaps between social programs (Social Security, Medicare, Pension Programs, etc.) and those approaching the age of eligibility by developing an early notification system, so diverse older adults will be more aware of the options available to them and learn how to navigate U.S. systems.
- Preserve and where possible expand Medicare and Medicaid benefits to seniors, as well as the Social Security benefit.
- Provide training on savings and retirement planning to youth and working adults in the Hispanic community to stave off retirement insecurity in the future.
- Take immediate steps to increase available quality rental housing that is subsidized or otherwise affordable, especially housing stock that is structurally suitable for seniors.
- Provide job training to Hispanic seniors able and willing to go back to the workforce.
- Provide financial literacy training to Hispanic seniors, their families and caregivers, including training on recognizing and addressing financial abuse.
- Create culturally and age sensitive volunteer networks that work with community-based organizations and provide seniors with information about social programs and how to access them.
- Ensure senior accessibility to SNAP and other cultural and age sensitive meal programs, or otherwise provide access to good-quality, nutritious food. No older adult should go hungry in the U.S.
- Ensure access to paid family leave, allowing families to have long-term care and services and provide programs that support family informal caregivers through education, and moral support.
- Establish a pipeline for Hispanic students to enter medical fields, with incentives to enter fields that serve the nation’s older adults, so that healthcare facilities can provide healthcare in a culturally, linguistically, and age appropriate manner.
- Aggressively combat financial exploitation, abuse, and neglect in all its forms, by funding programs to educate older adults and caregivers on financial literacy, Medicare fraud, and elder abuse prevention. The following report not only documents the barriers facing the nation’s Hispanic older adults, it also reflects their voices, which speak messages of hope for themselves, their families and communities. Community forum input from Hispanic older adults includes recommendations ranging from job training so that they can contribute to their retirement security to training on retirement saving and healthy living for working and young adults. Even through their difficulties, they are able to clearly envision paths to security and health. This report calls on the nation to support their vision.