When it comes to HIV prevention and treatment, there is a growing population that is being overlooked — older adults — and implicit ageism is partially responsible for this neglect, according to a presentation at the 125th Annual Convention of the American Psychological Association.
“The lack of perceived HIV risk in late adulthood among older people themselves, as well as providers and society in general, inhibits investment in education, testing and programmatic responses to address HIV in an aging population,” said presenter Mark Brennan-Ing, PhD, director for research and evaluation at ACRIA, a non-profit HIV/AIDS research organization in New York City. “Ageism perpetuates the invisibility of older adults, which renders current medical and social service systems unprepared to respond to the needs of people aging with HIV infection.”
There is an enduring misconception that HIV is a disease of the young, and in particular young gay and bisexual men, according to Brennan-Ing, but it is estimated that in developed countries with well-developed health care systems, almost half of all people living with HIV are 50 or older. In some countries, that number is expected to increase to 70 percent by 2020. People 50 and older account for 17 percent of new HIV infections, and are more likely than younger adults to be diagnosed with AIDS at the same time as they discover their HIV status.
Previous research has suggested as many as two-thirds of all older Americans with HIV have experienced stigma due not only to the disease, but to their age. This phenomenon may be even more pronounced among gay and bisexual men, because of an increased obsession with age and internalized ageism within the gay community.
Despite a median age of 58, older Americans with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s, said Brennan-Ing. The combination of stigma due to age, sexual orientation, race/ethnicity, gender identity and expression, and HIV can lead to a number of negative outcomes specific to this population.
“Stigma results in social isolation, either through rejection by social network members or self-protective withdrawal, leading to loneliness and, ultimately, depression,” he said. “Stigma also makes people reluctant to disclose their HIV status, which could affect their health care treatment or prevent them taking precautions to reduce transmission.”
Older individuals who believe in the negative stereotypes associated with aging can also have poor health outcomes. Negative expectations about aging have been associated with poor cognitive test performance in older individuals and can increase stress, resulting in physical health issues, such as heart disease. More important, if an individual believes that aging leads to inevitable health problems and decline, that person may stop engaging in healthy behaviors, creating a self-fulfilling prophecy.
“These mechanisms may be responsible for empirical findings that internalized ageism is related to both chronic disease and longevity,” he said.
While it may not be possible to reduce ageism at the societal level, there are opportunities at the community level for providers of health and human services to buffer or reduce the impact of ageism for those who are infected or at risk for HIV, he said.
Specifically, Brennan-Ing recommended:
• Training health providers in HIV screening, early diagnosis and initiation of antiretroviral therapy in older populations and integration of key services.
• Prevention, education and outreach targeting older adults.
• Treatment guidelines for older individuals with HIV.
• Funding in line with the aging of the epidemic.
• Engagement of communities, community-based organizations and social service providers in outreach, mental health and social support.
• Addressing the needs of special populations.
“With the demographic shift toward older adults in the HIV population globally, and the elusiveness of a cure, addressing the care needs of this aging population are paramount,” said Brennan-Ing. “The aging of the HIV epidemic will be very challenging, but provides the opportunity to mount a global response that will address the needs of this population across regions and settings.”
Social Workers Can Now Learn Medicare Online and Earn Continuing Education Hours
Social workers can now earn continuing education hours while they learn Medicare at their own pace, anytime and anywhere with Medicare Interactive (MI) Pro, an online Medicare curriculum powered by the Medicare Rights Center.
MI Pro provides the information that social workers and health professionals need to become “Medicare smart,” so they can help their clients navigate the Medicare maze. The online curriculum contains information on the rules and regulations regarding Medicare—from Medicare coverage options and coordination of benefits to the appeals process and assistance programs for clients with low incomes.
“For over 25 years, social workers have been turning to Medicare Rights’ helpline counselors for clear and concise information on how to help their clients access the affordable health care that they need,” said Joe Baker, president of the Medicare Rights Center. “Now social workers can enroll in MI Pro and learn—or enhance—their Medicare knowledge at their convenience while fulfilling their continuing education requirements.”
The Medicare Rights Center, a national nonprofit consumer service organization, is the largest and most reliable independent source of Medicare information and assistance in the United States.
Licensed Master Social Workers and Licensed Clinical Social Workers can earn continuing education hours when they successfully complete any of the four MI Pro programs: Medicare Basics; Medicare Coverage Rules; Medicare Appeals and Penalties; and Medicare, Other Insurance, and Assistance Programs. Each MI Pro program is comprised of four to five course modules.
All MI Pro programs are active for one year following registration.
MI Pro courses are nominally priced. Additionally, social workers who purchase all four programs at once will receive an automatic 20 percent discount.
Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives.
Available only through the Medicare Rights Center, Medicare Interactive (MI) is a free and independent online reference tool that provides easy-to-understand answers to questions posed by people with Medicare, their families and caregivers, and the professionals serving them. Find your Medicare answers at www.medicareinteractive.org.
The Critical Role of Caregivers, and What they Need from Us
Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.
For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.
Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.
Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.
Respite is Essential, but lacking
The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?
Changes in the workplace
More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.
As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.
Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.
The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.
Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.
The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.
AARP Applauds Unanimous Senate Passage of RAISE Family Caregivers Act
AARP applauds the unanimous passage in the U.S. Senate of the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1028).
The legislation, introduced by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), calls for the development of a strategy to support the nation’s 40 million family caregivers. It would bring together stakeholders from the private and public sectors to recommend actions that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.
It would bring together stakeholders from the private and public sectors to recommend actions that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.
Every day, millions of Americans are caring for parents, spouses, children and adults with disabilities and other loved ones so they can live independently in their homes and communities for as long as possible. They take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. The unpaid care family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.
“Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources and take a break so they can rest and recharge,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “Thanks to the efforts of long-time champions of the bill Senators Susan Collins and Tammy Baldwin, we are one step closer to helping address the challenges family caregivers face.” AARP is working to bolster bipartisan support for the RAISE Family Caregivers Act in the U.S. House of Representatives.
The bill (H.R. 3759) was introduced by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL), along with original cosponsors Representatives Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY). The RAISE Family Caregivers Act has the support of about 60 national organizations.
For more information and to track this bill visit Congress.gov.
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