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.”
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.
Child Welfare System Increasingly Relying on Relatives to Raise Children Exposed to Trauma
According to a new report by Generations United, grandparents and other relatives who step in to care for children, play an important role in mitigating trauma, which children in the child welfare system experience at starkly higher rates than the general population.
Thirty percent (127,819) of children in foster care are being raised by grandparents or other relatives, a six percent increase since 2008. In the wake of the opioid epidemic, that number is even more dramatic in the states hardest hit by the opioid epidemic like Ohio, which saw a 62 percent increase in the number of children placed with relatives in foster care since 2010. For each child in foster care with a relative, there are 20 children outside of the system with a relative.
More than half of the children in the child welfare system have endured four or more adverse childhood experiences (ACEs), leaving them 12 times more likely to have negative health outcomes – substance use disorders, mental health problems, and engaging in aggressive or risky behaviors – than the general child population.
“Growing up with a childhood full of trauma and abuse, there were very few moments where I felt safe and very few people with whom I felt protected. Being put into my uncle’s care was the best decision that could have ever been made for me,” explained Kindra, whose last name is withheld to protect her privacy. “It wasn’t an easy road by any means, but I have no doubt in that it completely saved my life.”
Compared to those in care with non-relatives, children in foster care with relatives have more stable and safe childhoods and a greater likelihood of having a permanent home. The have better mental and behavioral health, and are more likely to report always feeling loved.
“These relatives are the loving and protective arms for babies, children and youth who’ve experience trauma,” said Donna Butts, executive director of Generations United. “They are caring for children with multiple high-level needs and they should get the support required for the families to thrive.”
Unlike parents or foster parents who plan for months or years to care for a child, grandparents or other relative caregivers usually step into their roles unexpectedly. At a moment’s notice, they are forced to navigate complex systems to help meet the physical and cognitive health challenges of the children who come into their care. Grandfamilies are less likely than foster families to have access to specialized training and support from professionals that have expertise in helping children, who have experienced trauma, heal.
“One thing I know to be true: you can’t love away the effects of trauma from neglect and abuse,” said Jan Wagner, grandparent caregiver, Michigan. “Our children need the same amount of intensive therapy and services as a traditional foster placement and we, as their caregiver desperately need the same to help them heal.”
Among the report’s recommendations:
- Reform federal child welfare financing to provide more trauma-informed support to prevent children from entering or re-entering foster care
- Increase availability of and access to trauma training and supports designed for grandfamilies
- Address barriers to licensing relatives as foster parents
- Ensure grandfamilies not licensed as foster parents can access financial assistance to meet children’s needs
Generations United will release The 2017 State of Grandfamilies in America report Sept. 13 at a reception, from 5:00pm to 7:00pm, in room G-11 of the Dirksen Senate Office Building on Capitol Hill in Washington, DC.
Generations United will honor Senator Susan Collins (Maine) and Senator Bob Casey (Pennsylvania)with its 2017 Grandfamilies Champion Awards at the event.
Stressed Out Caregivers Are Using ER Visits for Respite, Study Finds
Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.
It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.
In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.
The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.
Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.
Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.
The cost of unpaid help
“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”
Ankuda, who led the study during her time at in the Robert Wood Johnson Clinical Scholars program at U-M’s Institute for Healthcare Policy and Innovation, is now training in palliative care at the Icahn School of Medicine at Mount Sinai.
“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M.
“We need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.” Deborah Levine, M.D., M.P.H.
Long-term data gives key insights
The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.
The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.
Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.
Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.
More research & services needed
Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.
Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.
“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”
Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.
Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.
Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.
One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.
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