New York-The Radical Age Movement held its first public event last evening at the New York Ethical Culture Society. One hundred people came out in the freezing cold to hear about what it takes to “leverage the power of age”.
The evening began with a welcome from Dr. Phyllis Harrison-Ross, Chairperson of the Social Service Board of the New York Ethical Culture Society.
Alice Fisher, founder of The Radical Age Movement, then talked about the need for people who don’t like the way that old people are portrayed and regarded in what she described as the “youth oriented culture of the United States” need to speak up. Alice told of her deep interest in longevity and its multiple effects on society and how this led her to the founding of The Radical Age Movement.
“I came to the realization that the extra years many of us will be living are not tacked on to the end of our lives. Rather, a whole new stage of life has opened up along the life span, and those are people between approximately 60 and 80 years of age who are still a vital and relevant part of our society.” “We”, said Fisher who is 69 years old, “are not ready to throw in the towel.” After being asked, “how do you change an entire culture”, her response was “with a movement. It’s the only way we’ve ever done it.” Right then and there the seed for The Radical Age Movement was planted.
After working for over a year with a small 10 person steering committee and launching a website a few months ago, The Radical Age Movement was ready to come out. “When people leave their career positions, whether by choice or not by choice, they walk into a void”, she said. “There is no role for us in society, unless we want to accept the description of old just because we are collecting social security.” People of this age, although older, are not ready to be consigned to the rocking chair. “Nobody even knows what to call us. Sometimes we’re the old boomers or the young seniors. We don’t even know what to call ourselves”, said Fisher.
The original agenda for last evening’s event included a participatory demo of what it is like to be part of an age-oriented consciousness raising group. Not expecting such a large turnout and without enough facilitators to guide the number of groups that would be necessary to run this part of the program as planned, Radical Age decided to let the program run with interactive discussion. After a presentation about ageism by Joanna Leefer, 65, a care-giving consultant, three people gave personal testimony about their own confrontation with ageism, while two others testified to the effect that participating in consciousness raising around the topic of age has had on the way they are experiencing ageing.
Corinne Kirchner, 79, who is a sociology professor at Columbia University and who experienced two strokes in her 70’s, talked about the way that people constantly try to give her too much help. She described Thanksgiving dinner where a nurse who was a guest at the dinner followed her around, prepared to catch Corinne should she fall. Understanding that the nurse was trying to be kind, Corinne was very polite but “inside I was so angry that this person was treating me like a child learning to walk.”
Hope Reiner, 70, the founder of “Hope Cares”, a companion service that provides one-on-one stimulation, socialization and engagement to older adults, talked about her abrupt dismissal from the consumer magazine publishing world where she worked for over 33 years. “Despite the magazines’ high ratings and high revenue and my standing as the #1 salesperson for much of that time”, she told the audience, “my career ended. I can only assume my dismissal was based on my age.”
Next it was Rodger Parsons’ turn to talk about his personal experience with ageism. Roger, 68 years old, does voiceovers for Radio, TV, Cable commercials as well as author voiceovers for other venues. He spoke about how ageism is especially relevant in the Voice Over world and ways of dealing with it. “It is especially important to confront situations as directly as possible to get outcomes that make it clear that access to work should be based on the talent of the performer not the performer’s age.”
After each of these testimonies, lively discussions from the audience ensued. People shared their own experiences or commented on the testimony they had just heard.
Alice then took the podium and gave a brief description of the consciousness raising process that The Radical Age steering committee has been using. “The one advantage to participating in this process”, she said, is providing participants the space and time to examine our own ageist tendencies”. “After all”, said Fisher, “we did grow up in this youth oriented society.” The Radical Age Movement is developing a guide for people who want to start their own consciousness raising group around the topic of age. This guide will be posted to The Radical Age Movement’s website, www.theradicalagemovment.com, in the coming weeks and be distributed at their next event on February 21st.
Barbara Harmon, 72, a speech language pathologist, and Jon Fisher, 70, artist and real estate broker, then testified to the changes that participating in the consciousness raising process has made for each of them.
Barbara spoke of how she came to accept the graciousness of those who offer her seats on crowded subways after coming to the realization that her own ageist attitude was getting in the way of her being able to accept aid when offered. “Accepting a seat acknowledges the fact that my age is recognized; but because of the discussion and support of my peers, I now feel comfortable with the recognition”.
Jon talked about his career in the ad business where everything had to be new and fresh, including the people. “I had the mindset that I had to look, act, and feel young; and I carried that with me into my personal life. When I was invited to join the consciousness raising group, I really didn’t think that my ideas about ageing would ever change. Now, I also feel more comfortable in my age. The consciousness raising process has made a major imprint on who I am and who I am becoming”.
Remarks and conversation continued until it was time to leave. Alice asked everyone to take a save-the-date for The Radical Age Movements next event on February 21st. This will be a 4 hour workshop entitled “The Age Café.” Through this process, those who attend will have the opportunity to help plan Radical Age’s agenda going forward.
Reacting to Alice’s expression of disappointment at not being able to proceed as planned, one attendee said that the evening was one huge gestalt consciousness raising session. Another comment by a member of the steering committee was, “I think we have the start of a real movement here.” That expression was echoed by many who attended the event.
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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