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A caregiving star p. 7 | A day in the life of family caregiver Susie Morrell.
Welcome aboard! p. 16 | West Health’s Amy Herr joins the ASA Board of Directors.
Covering advances in research, practice and policy nationwide www.asaging.org
MARCH–APRIL 2020 volume xli number 2
the bimonthly newspaper of the American Society on Aging t i t l f t i i t i
I see caregivers … when will I see policymakers?
In this issue
FORUM The eldercare industrial complex; and boomers must step up! page 3 AARP THOUGHT LEADERSHIP The economic potential of aging populations page 5 IN FOCUS On caregiving: personal impacts, promising policies pages 7–11 Innovation in California promotes pathways out of nursing home life page 12 The “elderly” prisoner: incarceration and old age page 13
By Donna Benton
M y lens for viewing filmand tele- vision shifted in 2004 while watching an episode of “Sex and the City” in which Miranda sits on the edge of a tub, bathing her mother-in- law, Mary. Mary had suffered a stroke, had memory loss and could no longer live independently. Miranda, who has a young son, a husband, a job and a new home, is now a family caregiver to an older adult. Usually, I would have ignored this sto- ryline because that is not why I—or any- one else—watched “Sex and the City.” However, from that day on, like the boy from “The Sixth Sense,” I see a prolifera- tion of special beings—not “dead people,” but very-much-alive family caregivers. And soon, so will everyone else. According to a joint national survey conducted by the National Alliance for Caregiving and AARP ( tinyurl.com/ yat3378n ), about 34.2 million Americans are providing unpaid care to adults ages
50 or older, which makes up almost 10 percent of the U.S. population. In the United States, some family caregivers are more visible than others. These caregiv- ers are called parents. As of 2016, there were 73.6 million people younger than age 18, compared to 49.2 million people older than age 65. However, in as few as 14 years, there will be a significantly greater number of older
But before discussing the future visible caregivers and needed public policy to ad- dress the population, I will review why caregiving for adults has not been a signif- icant focus for public policy. Why Are Family Caregivers Invisible? An article by Lynn Friss Feinberg and Carol Levine ( tinyurl.com/yx2c4jlj ) high- lighted two significant trends that influ- enced changes in caregiving in the past 60 years. The authors argue that the shift in people living longer with chronic illness- es has fundamentally changed the nature of caregiving and the tasks family care- givers face.
Parents are more visible than other caregivers.
adults than children (77.0 versus 76 mil- lion) ( tinyurl.com/yywwdfwc ). Of course, not everyone older than age 65 will need a caregiver. Still, even if the need for family caregivers to older adults remains static, by 2040 people will be spending more time in eldercare than they do in childcare.
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Applause, please! ASA announces its 2020 award winners A SA annually recognizes deserv- ing individuals for their leader- ship and contributions to ASA and to the field of aging via its leadership awards program, which includes the ASA Hall of Fame Award, the ASA Award, the Gloria Cavanaugh Award for Excellence in Training and Education, the Mental Health and Aging Award, the Award for Excellence inMulticultural Aging and the Graduate Student Research Award. The 2020 winners, listed below, will receive their awards during the opening General Session at 5 p.m. on Tuesday, March 24, at the 2020 Aging in America Conference, and will be profiled in future issues of Aging Today . The ASA Award is presented to an in- dividual who has made outstanding con- tributions to aging-related research, administration or advocacy. The 2020 ASA Award goes to Louis Colbert , who has spent four decades as a leader and mentor in the aging network, including serving a term as Chair of the ASA Board of Directors. Colbert is currently Vice President of Operations for the Philadel-
phia Corporation on Aging (PCA), and served previously (from 2001–13) as Di- rector of the Delaware County Office of Services for the Aging. At PCA, which is the nation’s fourth largest area agency on aging, Colbert ad- ministers more than 70 percent of PCA’s workforce and budget and is lauded for his record in change management, pro- cess improvement, consumer and provid- er relations and fiscal and program compliance. At Delaware County, he over- saw multi-million dollar budgets allocat- ed from federal and state offices. Colbert, influenced by his personal role as a co-caregiver (with his siblings) for his
Aisha Adkins with her mother.
Hope’s Heroes: real-life stories from Millennial caregivers T his past New Year’s Day, The SCAN Foundation honored family caregivers with a float in the 2020 Rose Parade in Pasadena, Calif., called “Hope’s Heroes: Honoring Caregivers of All Generations.” Central to the float were a castle and two knights. Eight caregivers rode on the float, ranging in age from 14 to
88, and embodying the span of caregiving situations. By participating and building the float, The SCAN Foundation aimed to draw particular positive attention to the Mil- lennial generation of caregivers. As The SCAN Foundation President and CEO Dr. Bruce Chernof has said, “Millennials of- ten get tagged as that ‘selfie generation’— very focused on getting their own needs met. That simply is not true. … they play a much bigger role caregiving in the lives of older adults than probably any generation
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Aging Today March–April 2020
ter care for older adults living in rural areas; sending a letter to the Administration for Community Living (ACL) expressing con- cerns about the agency’s reorganization; submitting comments to the ACL related to future activities of the Elder Justice Coor- dinating Council; and signing onto 28 let- ters from the Leadership Council of Aging Organizations urging public policy change on behalf of older adults. To helpmembers advocate more easily, the PPC created an advocacy and policy resource page on the ASAwebsite tomake advocating even easier for our members; asaging.org/advocacy . ASAMembers and 2020 Presidential Candidates Weigh In This past Fall, the PPC surveyedmembers’ opinions on public policy priorities (see the article on page 11 by Menne et al. about survey outcomes). The top five policy is- sues of the 300 survey respondents re- mained the same from 2017 through 2019: their main concerns were long-term ser- vices and supports (LTSS), Medicare and Medicaid, poverty and economic security, healthy aging/chronic disease manage- ment and caregiver supports and services. One statistic from the survey that stood out was the fact that 64 percent of survey respondents want to build skills around monitoring and-or analyzing leg- islation, which means ASA’s public policy push not only is making members more aware of the need to advocate, but also is instilling in them a desire to become more active advocates. To help ASA members make the most educated choices on behalf of older adults in the upcoming presidential election, the PPC sent out a “Presidential Scorecard” list of questions to all of the major presidential campaign organizations, asking them to weigh in on eight topic areas—LTSS; Medi- care; Medicaid; poverty and economic se- curity; healthy aging chronic disease management; caregiver supports and ser- vices; Social Security and retirement secu- rity; and housing and transportation. Candidates’ responses (compiled in late January 2020) will be shared during the Town Hall session at AiA 2020 in At- lanta. Attendees will have a chance to then grade candidates in real-time via the Conference app. Looking ahead to the remainder of 2020, those same eight topic areas (listed above) will form the PPC’s key priority areas. If you are new to advocacy, or would like to know more about PPC activities, please visit www.asaging.org/forums/ education-forums/policy-and-advocacy. I amverymuch looking forward to see- ing you all at AiA 2020, March 24–27, in Atlanta! If you haven’t yet registered, go to www.asaging.org/aging-in-america . n WRITE TO US We welcome your responses both to Aging Today articles and to guest commentar- ies, which present the opinions of their authors and not necessarily those of the American Society on Aging. Letters should be no more than 350 words long. We also welcome ideas for articles you would like to see in future issues of Aging Today . mail Aging Today, “Letters” 575 Market St., Suite 2100 San Francisco, CA 94105-2869 fax (415) 974-0300 e-mail firstname.lastname@example.org
American Society on Aging www.asaging.org Aging Today (issn 1067-8379) is published bimonthly by the American Society on Aging. Articles may be reproduced by those obtaining written permission. Postmaster: Send address changes to Aging Today, ASA, 575 Market Street, Suite 2100, San Fran- cisco, CA 94105-2869. Phones: editorial (415) 974-9619; advertising (415) 974-9600; or visit www.asaging.org/publications . For membership or other information about ASA, call (415) 974-9600, fax (415) 974-0300 or visit www.asaging.org . Subscription Price: individual non- members: $74.00/year (included with annual membership); nonmember institu- tions/libraries: $110.00/year. Subscription
A 2019 advocacy push— the ASA Public Policy Committee going strong
advocacy and the second an overview of the PPC’s priorities. The PPC also devel- oped its committeemission, priorities and guiding principles, going forward.
By Karyne Jones
N ever before has advocacy on be- half of older adults felt more critical than it does in this elec- tion year. ASA’s Public Policy Committee (PPC) has been working espe- cially hard all year to en-
PPC Drives Direct Advocacy in a Challenging Year
In August 2019, ASA and SAGE submit- ted joint comments supporting LGBT- inclusive implementation of Section 1557 of the Affordable Care Act, which prohib- its discrimination on the basis of race, col- or, national origin, sex, age or disability in certain health programs or activities. This provision builds upon long-standing and familiar federal civil rights laws such as Title VI of 1964, Title IX of the Educa- tion Amendments of 1972, Section 504 of the Rehabilitation Act of 1973 and the Age Discrimination Act of 1975. Across the year, the PPC created and sent ASA “Advocacy Alerts” on low- income housing tax credits, Older Amer- icans Act reauthorization and erosion of healthcare rights pertinent to the ACA’s Section 1557; these alerts went to 30,000 people in the ASA universe. The PPC also sent out a statement regarding the proposed citizenship question on the 2020 Census. Other 2019PPCactions included the fol- lowing: submitting comments to theHouse Ways andMeans Committee related to bet-
agency rate (institutional rate only): $94.00/year.
Aging Today is indexed in the Cumula- tive Index to Nursing and Allied Health Literature and the Areco Quarterly Index to Periodical Literature on Aging. Printed in the U.S.A. © 2018 American Society on Aging. All rights reserved. The American Society on Aging (ASA) is the essential resource to cultivate leadership, advance knowledge and strengthen the skills of those who work with, and on behalf of, older adults.
sure ASAmembers’ voices would be heard on the national stage. That’s why I am dedicating this column—whichwill be my last prior to handing over leadership of the ASA Board of Directors to Michael Adams—to the PPC’s 2019 efforts and its priorities into the future. One of the PPC’s early and public suc- cesses was the inaugural Town Hall ses- sion at the 2019 Aging in America Conference (AiA), with 900 people in at- tendance. During the event, which high- lighted ASA’s public policy agenda, members were polled live on their advo- cacy priorities; these included elder homelessness, elder justice and legislation to foster it, ageism, discrimination and elder advocacy. Following that success, the PPC con- vened two webinars—one a “how-to” on
ASA Board Chair: Karyne Jones
ASA Interim CEO: Cynthia D. Banks
Editor: Alison Hood
Senior Editor: Alison Biggar
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EDITORIAL ADVISORY COMMITTEE
Chair, Robert Espinoza, Vice President of Policy, PHI, Bronx, New York Immediate Past Chair: Robyn L. Golden, Director of Health and Aging, Rush University Medical Center, Chicago, Illinois Donna Benton, Director, USC FCSC/ LACRCA, Los Angeles, California Diane Brown, Executive Director, Medicare Strategy & Operations, Kaiser Permanente Northern California, Oakland, California Paul Greenwood, Elder Abuse Expert Witness and Teacher/Consultant, San Diego, California Kristi Mellion, Director of Programs, Alzheimer’s Services of the Capital Area, Baton Rouge, Louisiana Anne Montgomery, Deputy Director, Center for Elder Care & Advanced Illness, Altarum, Washington, D.C. Kathy Sykes, Retired, Senior Advisor for Aging and Environmental Health, U.S. EPA, Washington, D.C. Laura Trejo, General Manager, Los Angeles Department of Aging, Los Angeles, California Sandra von Doetinchem , Program Specialist, Outreach College Professional Programs, University of Hawaii at Manoa, Honolulu, Hawaii
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Aging Today March–April 2020
The eldercare industrial complex: favoring corporations over care
thousands of nursing homes across the country that were acquired by Wall Street investment companies such as the Carlyle Group, whose other assets include fast-food chains and electronics retailers. Unsurpris- ingly, standards of care did not improve under Dunkin’ Donuts’ ownership. According to the Times article, resi- dents at those nursing homes subject to mergers and acquisitions by private equi- ty were worse off (according to various regulatory metrics) than they had been under the previous owners. The facilities at the center of this ruthless enterprise saw costs slashed and profits raised, be- fore being quickly sold at significant markups to other cabals of faceless inves- tors. Rinse, repeat. ‘Residents at those nursing homes subject to mergers and acquisitions by private equity were worse off.’ Treating the acquisition of nursing fa- cilities like real estate flipping has had dire consequences for residents who have been passed from corporation to corpora- tion. And, as Times reporter Charles Duhigg pointed out, the decline in care is mirrored by a stark lack of accountability and transparency: “The Byzantine struc- tures established at homes owned by pri- vate investment firms …make it harder for regulators to know if one company is re- sponsible for multiple centers. And the structures help managers bypass rules that require them to report when they, in effect, pay themselves from programs like Medicare and Medicaid. “By contrast, publicly owned nursing home chains are essentially required to dis- close who controls their facilities in securi- tiesfilingsandotherregulatorydocuments.”
By Ed Dudensing T he increasing corporatization of skilled nursing facilities is a root cause of the hidden national scan- dal of elder abuse. Who owns nursing homes? The an- swer often depends upon who is asking. If a family caregiver is being shown around a leafy facility with the intention of shell- ing out thousands of dollars each month for their older loved one to reside there, corporate owners spare no expense in flaunting untrammeled devotion to their residents’ comfort, health and well-being. If, like me, you’re an elder abuse attorney with questions about a fatal abdication of care, the red carpet is rolled back up, the owners recede into the shadows and the facility claims to be barely keeping its head above water. Eldercare facilities being gobbled up by private equity is nothing new. Proprietary chains have been owning and operating nursing homes since at least the 1960s, and the corporatized model of eldercare has been dominant for 40 years. A 1986 paper ( tinyurl.com/qklzfaw ) showed that more than 75 percent of nursing homes nation- wide were owned by for-profit interests, a trend that has continued unabated. But big money and remote manage- ment have not translated into greater ac- countability or higher standards of care. Quite the opposite. Nursing Homes and the Hazards of Corporatization In 2007, The New York Times ran an inves- tigative piece about the way private equity firms divided ownership of nursing home chains into multiple companies, shielding themselves from lawsuits and regulatory oversight ( tinyurl.com/sszmvc3 ). The inves- tigation gathered government data on
then hide behind a web of corporate ob- fuscation when challenged about fatal lapses in care.
Public outrage over the Times article led to congressional hearings in the pursuit of more accountability and transparency legislation, slated for implementation un- der the Affordable Care Act (ACA); howev- er, the ACA’s rules and regulations ( tinyurl. com/t2amajz ) from 2011 merely kicked the can down the road, announcing that “the proposed provisions regarding the owner- ship disclosure requirements … will be fi- nalized at a later date,” while requesting comments from the public. Toothless regulation has only encour- aged more private equity firms to hitch their investments to the gravy train. Real Estate Investment Trusts (REITs) are gleefully snapping up dozens of skilled nursing facilities at a time. In 2018, the ominously named Locust Point Capital announced a $312million fund for the sole purpose of acquiring senior care facilities. A month later, Fundamental Advisors LP set their sights on acquiring a billion dol- lars worth of assets ( tinyurl.com/rkmkezl ) as part of a joint venture with Senior Care Development (SCD). SCD’s website proudly states that “there is a natural progression from de- veloping the full continuum of senior care facilities to acquiring and investing in them. SCD has done so selectively and successfully—often against prevailing industry opinion—while maintaining vigilance toward turnaround opportuni- ties. We know how to interpret the un- derlying issues, jump on before the bandwagon rolls, and step off before it pulls up short.” Without stopping even to pay basic lip service to the notion of resident care, they go on to list ( tinyurl.com/tj64zao ) some of the facilities brazenly described as “band- wagons,” including 175 nursing homes in 19 states, purchased “under the financial pres- sure of an overheated insurance liability environment … at depressed values” and sold a few years later for $1.4 billion—dou- ble what SCD paid. The coup de grâce, they cheerfully boast, was the separation of “ownershipof the real estate fromthe oper- ating company,” which allowed them to “contain patient liability and restore profit- ability—creating nothing less than a para- digm shift in the nursing home industry.” They’re right about one thing. There has been a paradigm shift in the nursing home industry—the well-being of resi- dents is now completely irrelevant to those responsible for providing it. Owners brag about raking in millions of dollars,
Tighter Regulation—Can It Drive Better Care?
Little has changed in the decade since The New York Times published its investiga- tion. A 2016 study ( tinyurl.com/t2pq77e ) from Harvard Medical School showed that nursing homes frequently bought and sold by corporate chains tend to provide a lower standard of care. The transparency and accountability pledges laid out in the ACA have been shelved, and elder abuse is on the rise. Labyrinthine corporate struc- Toothless regulation has only encouraged private equity firms to buy more nursing homes. tures are not just shielding those respon- sible for criminal negligence, they are actively rewarding them for it. Until regulations are tightened to en- sure nursing facilities are run more like care centers and less like fast-food chains, the only recourse for victims of abuse and neglect is to pursue justice through litiga- tion—an option not financially feasible for everyone. It is the duty of public policy makers to transform the industry by en- suring that federal and state certifications are awarded only to management compa- nies that provide high standards of care to their residents. The eldercare industrial complex can- not be allowed free reign to maximize profits by dint of a callous disregard for the dignity and well-being of our most vulnerable citizens. n Ed Dudensing is a former deputy district attorney for California’s Sacramento Coun- ty and a champion for elder rights. He rep- resents victims of elder abuse in nursing homes and in assisted living facilities; dudensinglaw.com/ . Resources The Changing Structure of the Nurs- ing Home Industry and the Impact of Ownership on Quality, Cost, and Access; tinyurl.com/qklzfaw 2011, Federal Register: Rules and Regulations (on payments and ownership disclosure); tinyurl.com/ t2amajz
Baby boomers need to step up— and step back By Kate Hoepke B y now, most have heard about the OK Boomer story ( tinyurl.com/ y6zxh8em ), which appeared in The New York Times this past Fall. Members
of Generation Z are angry and frustrated with the perilous state of the world they will inherit from baby boomers. The plan- et could become uninhabitable in their lifetimes, economic inequality threatens their ability to succeed and U.S. democra- cy is under siege. These young people are upset and scared, and why wouldn’t they be? I am, too. As a woman in my mid-60s, the OK Boomer meme alerted me to feelings I
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Aging Today March–April 2020
Baby boomers must step up › continued from page 3
‘Fear will not seed change at this scale.’ what are we contributing to the greater good that will endure after we’re gone? But the world we’re now living in no longer affords us that option. We must wake up to the future and the support role that older adults must play. We need to make new choices. Erik Erikson’s eight stages of psy chosocial development ( tinyurl.com/ y8u84rx2 ) provide a framework for un- derstanding what drives generational choices. Each stage is characterized by a crisis of two conflicting forces (e.g., from trust versus mistrust at birth up to 18 months; to ego integrity versus despair for ages 65 and older); successful resolu- tion of these results in the acquisition of basic virtues. For baby boomers, the tension is be- tween generativity and stagnation, which leads to thevirtueof caring. Inotherwords, Of Power, Purpose and Leverage This question of baby boomers’ contribu- tions to the greater good came into sharp relief recently while I attended a program at my Oakland church. The program in- cluded students from the Martin Luther King Jr. Freedom Center ( mlkfreedomcen ter.org ), which brings together individuals and organizations of diverse ages, races and socioeconomic backgrounds, to work side-by-side for a healthy democracy. Its director, Dr. Roy Wilson, reframed Erik- son’s theories, urging us elders in the au- dience to ask ourselves: What am I doing
to prepare the next generation versus how am I pleasing myself? The discussion that followedmovedme into a new state of awareness, especially as I heard from 17-year-olds who are com- mitting themselves to the responsibilities of leadership development. They spoke, with a wisdom that belied their age, about love, non-violence and power, which one young woman defined as “achieving a pur- pose.” It’s that simple, she said. Seeing power this way makes it lot more difficult to disclaim. So, I’m asking myself new questions about the choices that will guide me in the coming decades: What is my purpose in light of our new social reality? What do I have to offer this new generation of leaders? How can I leverage my experi- ence, networks and resources to advance their agenda? I amamiddle-classwhitewoman, ababy boomer privileged to have come of age in an era defined by choice—choices that previ- ous generations couldn’t fathom: whether or not to go to war, or to have a baby, or to stay married or to love a same-sex partner. Making choices is part of my generation’s ethos and for me, another definition of per- sonal power. What will I do with that pow- er? What will you dowith yours? As a community-builder and leader in the Village Movement, I am choosing to speak out and use my powers of persua- sion to mobilize intergenerational ac- tion to address the perils knocking at the door. I’m coordinating face-to-face dialogues among diverse groups of A DecisionMade and Challenges to Face
‘What do I have to offer this new generation of leaders?’ identities that has come to light in the last decade. Members also heard from repre- sentatives of Vote16 ( vote16usa.org ), a na- tional campaign to extend voting rights to 16- and 17-year-olds at the local level. Moving forward, we’ll be seeking new partners to help us discover an expanded sense of interconnection. I invite you to do the same in your community. As we baby boomers approach the final decades of our lives, Erikson tells us that our developmental task will be to navigate the tension between integrity and despair. We’ll be challenged to weave together the threads of our lives—the choices we’ve made, the love we’ve created, the limita- tions we’ve overcome—into a narrative that makes us feel whole and proud of what we’re leaving to succeeding genera- tions. The alternative is to experience the burdens of regret and unfulfilled purpose, and a longing to know our place in the larger human story. n younger and older adults to learn about our different worldviews, to discover common priorities and to co-create an action agenda. Earlier this year, a group of LGBTQ Millennials met with older Village mem- bers to discuss the spectrum of gender Kate Hoepke is executive director of San Francisco Village, chair of Village Movement California and an Encore Public Voices fellow with the Op-Ed Proj- ect. She can be contacted at kate@sf village.org.
which they adopt new technology and use existing technology, never mind the “pain” (!) they experience watching as older people try to navigate tech. All that angst and energy is being put to good use in a startup in New Mexico called Teeniors ( teeniors.com ), which pays teenagers to coach older adults on how to best make use of technology. Through group classes and individual tutoring, the company connects teens who need paying work with older adults who need help get- ting the most out of their smartphones, computers, laptops and tablets. As mentioned in a late-January pro- file of the company on NPR ( tinyurl.com/ thct6sl ), the owner, Trish Lopez, got the idea from her mother, who was constant- ly losing passwords and wasting time re- doing work. Lopez wished she could send a trustworthy person to her moth- er’s house to help. Enter Teeniors, which provides teens with jobs and as a side benefit, the teens form connections with older adults. “I think that’s why we’ve been so suc- cessful,” Lopez said in the profile. “The intergenerational learning experience is really remarkable and that’s why I always say the main service we provide is not tech support. It is human connection.” Lopez also mentioned the way the work, even for only a fewhours permonth, has helped teens overcome depression, But fear will not seed change at this scale. Change will emerge out of hope and a just vision for the future, guided by younger generations. They have more at stake. And real change will require humility from those of us who have achieved a certain measure of power and position, and our willingness to le- verage that power to advance an agenda equal to the threats we all face. Baby boomers need to step up and step back at the same time. This can be challenging. A 20th- century view of retirement suggests that by a certain age we deserve leisure. We’ve worked hard, raised families, paid taxes and now we can relax and make pleasure a priority. My dad played golf and pursued leisure activities for 30 years after retiring. had long been avoiding: despair about the corruption of our democratic ideals; outrage with our collective denial of the climate crisis; and shame that mass shootings are commonplace, that chil- dren live in cages at our southern border and that my Oakland neighbors live in tent cities under the freeway. I’m now facing the painful reality that this is the world my unborn grandchil- dren will inherit if nothing is done to change course. I fear that we’re too late to reverse the effects of climate change, too politically complacent to fight for our democracy and too numbed by media to know what the truth is anymore. Real Change Requires Humility— and NewChoices
The tech connection: teens and elders bond via technology coaching A nyone who has interacted with high school students lately is quite familiar with the speed at
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anxiety and relationship issues. For the el- ders served, it’s an equal boon. Teenior Tess Reynolds, 17, helped Camilla Dorcey, 76, to download Whats App, and now Dorcey can chat with fam- ily and friends in Africa and Europe, free of charge. Reynolds related to Dorsey’s earlier frustrations with being rushed and overwhelmed, as Reynolds has a learning disability and often was pushed to hurry her schoolwork along. “I know how it feels to be rushed,” Reynolds said. “I want to make sure that doesn’t happen.” The successful Teeniors startup has attracted notice from Comcast and Face- book, which have given grants to a new nonprofit arm of the company to serve el- ders who cannot pay for services. So far, the group has served 3,000 older adults in NewMexico. n
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Aging Today March–April 2020
Aging of our nation’s population represents economic opportunity for all generations AARP THOUGHT LEADERSHIP
employment. This age cohort’s contribu- tion to federal, state and local government budgets totaled nearly $2.1 trillion in 2018—a figure that will quadruple by 2050, asmore generations, includingMillennials and Generation Z, turn age 50 by 2031 and 2047. This tax revenue includes amounts paid directly by people ages 50 and older in federal income taxes, as well as the ripple effects of their economic activities. Beyond economic contributions, peo- ple ages 50 and older give back to society in other vitally important ways. They play a central role in supporting families and communities through caregiving, volunteering and charitable donations. In 2018, adults ages 50 and older donated $97 billion to charitable organizations. Meanwhile, people ages 50 and older con- tributed $745 billion in value for unpaid activities including volunteering and family caregiving. Taken together, the overall contributions of this age cohort represent more than $9 trillion. Maximizing the Longevity Dividend Yet, even with the economic and societal contributions of people ages 50 and older, they are significantly mis- and under- represented in the rollout of new prod- ucts, services and marketing campaigns. An AARP study found that less than 5 per cent of marketing and media images showed an older person using technology, compared with 30 percent that portrayed younger people ( tinyurl.com/y3m9ddub ). And despite overall gains in life expec- tancy, significant gaps persist for some de- mographic segments that do not enjoy those gains, resulting in large part from unequal access to the resources every per- son needs to live longer, healthier lives. Efforts to promote the contributions of people ages 50 and older also should take into account these disparities. To create opportunity for all and max- imize the longevity dividend going for- ward, we must take action now, and that action must come from all sectors. Gov- ernments at all levels, for example, can start by enacting and enforcing strong anti-discrimination laws that protect old- er workers, as well as developing creative housing and community solutions for all generations. The business sector canmake age a part of their diversity and inclusion policies; it can design and innovate prod- ucts and services tailored to older adults; and it also can recognize and support its employees who are family caregivers. Fi- nally, nonprofit organizations (in addition to embracing an age-diverse workforce) can embrace older individuals’ talents and passion as volunteers and funders. And each of us has a personal role and respon- sibility within this strategic process. A Societal Shift Is Necessary Of course, underpinning all such action must be a cultural shift. Attitudes must evolve, driven in part by small intention- al changes at so many levels, such as in the human images that marketers
The growth of America’s older population is a key driver of economic expansion and innovation. The way humans age is changing, mostly for the better. More than ever be- fore, people are living longer and, in many cases, healthier lives. People have oppor- tunities for continued productivity and By Debra Whitman , Jean Accius and Joo Yeoun Suh T he United States is aging. At a time when people are having fewer children, life expectancy has in the past century increased by more than 30 years ( tinyurl.com/rhmngu7 ) and, for the first time in U.S. history, older adults are projected to outnumber children ( tinyurl.com/y3bqavwx ). growth that their parents and preceding generations never had. People’s ability to live longer, healthier and more produc- tive lives is one of humankind’s greatest accomplishments. The bad news is that society doesn’t see it that way ( tinyurl.com/rvtphjq ). Atti- tudes and stereotypes about aging have not changed. And many ideas and ap- proaches to managing the aging process, as expressed in the media, in marketing and in product and services design are out of date. Far from being a drain on society, the growth of the older population is a key driver of economic expansion and innova- tion. This growthalso is creating enhanced value in the consumer marketplace, trans- forming markets and sparking innovation across every sector of the U.S. economy. As people extend their work lives, they fuel economic growth, contributing (and likely spending more) past the tradi- tional retirement age. Importantly, the economic gains of this demographic flow to all generations, in part because people ages 50 and older provide resources to their parents, their children and their grandchildren. AgeismBegone! Longevity Can Drive a Healthy Economy No question, their economic contribu- tion flows in all directions, taking many forms. AARP’s report titled, “The Lon- gevity Economy Outlook: How People Ages 50 and Older Are Fueling Economic Growth, Stimulating Jobs, and Creating Opportunities for All” ( tinyurl.com/se q5uhm ), shows that in 2018, the economic activity of people ages 50 and older was estimated at $8.3 trillion and is driving the U.S. economy—and this trend is accel- erating. By 2050, the economic contribu- tions of the population ages 50 and older will more than triple to $28.2 trillion. The impact of this age demographic on overall employment is substantial, in 2018 supporting 88.6 million jobs for all genera- tions, which is about 44 percent of total
‘Advertising must authentically represent the full spectrum of living—and aging.’ choose. AARP’s Longevity Economy Outlook provides insights for industry leaders across sectors to create a new vi- sion for aging—complete with new sto- ries, new innovations and new solutions. Private-sector leaders and product de- velopers must think past stereotypes when creating solutions. Advertising must authentically represent the full national plan recommends de-prescribing T his past January, the Lown Insti- tute released a new plan to stem the rise in medication overpre- scribing among older adults. Called “Eliminating Medication Overload: A Na- tional Action Plan,” it was developed by 22 experts, including patient advocates, phy- sicians, nurses, pharmacists and research- ers ( www.lowninstitute.org/pills ). More than 40 percent of Americans take five or more prescription drugs, and almost 20 percent take more than 10. If over-the-counter meds are included, the number of older adults taking five or more medications rises to two-thirds. With each additional drug, the chance of hav- ing an adverse reaction increases seven to 10 percent. To combat such adverse reactions and drug overloading, the Lown Institute plan recommends the following actions: • Implement prescription checkups, wherein doctors review all of their pa- tients’ medications and potentially de- prescribe some as needed; • Raise awareness of the issue with cli- nicians, policymakers and the public; • Improve information at the point of care by ensuring healthcare practitioners have up-to-date and accurate information on harms and benefits of medications when prescribing them; • Educate and train health profession- als to reduce medication overload; and • Reduce the influence of the pharma- ceutical industry. “Clinicians have access to easy-to-use, point-of-care guidance about how to pre- scribe medications. We should aim for similarly accessible and easy-to-use tools for de-prescribing,” says Michael Stein- Medication overload: a new
spectrum of living—and aging. As we humans live out our extended lives, we all must work together to test and deve lop new approaches to living, learning, earning—and connecting. n Debra Whitman, Ph.D., is executive vice president and chief public policy officer at AARP, in Washington, D.C. Jean Accius is senior vice president, Global Thought Lead- ership, at AARP. Joo Yeoun Suh, Ph.D., is director, Thought Leadership–Longevity Economy, at AARP. To find out more about AARP research, collaborations and con- venings around longevity, go to thought email@example.com.
man, professor of medicine at University of California, San Francisco, member of the Medication Overload Advisory Board and co-director of the U.S. Deprescribing Research Network. The plan is backed by more than 15 na- tional and international organizations, including the American Geriatrics Soci- ety, Community Catalyst, Institute for Healthcare Improvement, Bruyère Re- search Institute, The John A. Hartford Foundation, Kaiser Permanente, Nurses Improving Care for Healthsystem Elders, Canadian Deprescribing Network, and Partnerships for Enhanced Engagement in Research. “It is incumbent upon all stakeholders to come together to address the serious harm that can result from poorly man- aged medications,” says Terry Fulmer, president of the John A. Hartford Founda- tion. “As our Age-Friendly Health Sys- tems initiative emphasizes, medication should not interfere with what matters to an older person, with their cognitive abili- ties, or their mobility. Prescription check- ups, as recommended in the Lown report, are an excellent tool for reviewing the ef- ficacy of medications and de-prescribing as needed.” n
Aging Today March–April 2020
Monthly Solutions FOR THE SENIOR CARE PROFESSIONAL
Par t of the Family Caregiver Suppor t Series, sponsored by Home Instead Senior Care. ®
Attend these webinars and earn free continuing education (CE) credits.The CEs are offered in cooperation with the American Society on Aging. CEs are available for 60 days following the live event. For more information and to compete the required pre-registration, go to: CaregiverStress.com/ProfessionalEducation
Lakelyn Hogan, MA, MBA serves as Gerontologist and Caregiver Advocate at the Global Headquarters of Home Instead Senior Care ® . Lakelyn began her career at the local franchise working one-on-one with seniors and CAREGivers. Today at the Global Headquarters, Lakelyn works to educate professionals, families and communities on Home Instead’s services and how to navigate the unique challenges older adults face. Lakelyn is a doctoral candidate at the University of Nebraska – Omaha where she is studying Social Gerontology. She has a Master of Arts in Social Gerontology and Master’s in Business Administration from UNO. Lakelyn has professional experience in the private and public sectors of senior care services. She also values giving back to her community. Currently, serving as Vice President of the Board of Directors for the Dreamweaver Foundation and is active in the Alzheimer’s Association’s Walk to End Alzheimer’s. Lakelyn has a passion for helping others, especially aging adults and their families.
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Aging Today March–April 2020
Looking through the caregiving lens, from the personal to the policy push This In Focus offers a current look at caregiving in America, with articles that straddle the line between personal and policy issues. Donna Benton, in her Page 1 article, posits reasons for the past dearth of policy around family caregiving (as caregivers tend to be women and-or minorities) and what advocacy we might expect in the future; Elizabeth Miller brings family caregiving into clear focus through a day in the life of her sister, who cares for their mother and adult brother; Robert Espinoza details the state of pol- icy around direct care workers and what new immigration rulings might mean; Josephine Kalipeni describes new policy efforts—ones that reflect a positive trend—to help family caregivers; and Carol
Marak explains the aging alone scenario and how solo agers can plan for caregiving needs. To comment on caregiving and-or care- giving policy, email the Aging Today editor at firstname.lastname@example.org .
A day in the life of a caregiver By Elizabeth Miller S usie, age 59, has been the primary caregiver for our mom, Carole, age 83, for almost four years. Susie chose
offer extra helping hands. Our brother Tim also comes up regularly, specifically to help with opening and closing the Michigan cottages. Susie also calls upon three private paid family caregivers to help with mom so she can go to church, play Bingo with Tom, at- tend local art and community events, take Tom to a doctor appointment or enjoy an occasional massage. Susie looks forward to a few getaways a year, including going to Penn State games with her children, at- tending the National Caregiving Confer- ence withme and heading to the beach for Sister Weekend. Securing coverage for 24 hours over multiple days is difficult, but Susie realizes how much these breaks recharge her. A Day in Susie’s Life How the Day Starts: “Hi, Mom,” Susie says from her bed as she answers the FaceTime call on her iPad. Susie is thank-
Susie also is acting guardian for our brother, Tom, age 56, who has a develop- mental and behavioral disability. For the past two years, the three of them have lived in Northern Michigan at what was once our parents’ summer home. While caring for Tom certainly presents unique caregiving and health worries, Susie is grateful to have him in Michigan. For more than a year, mom has been 100 percent bedridden due to the progres- sion of her COPD and mobility issues. Mom also has diabetes, depression, ede- ma, sleep apnea, heart disease and hear- ing loss. Since summer 2018, Mom has received home hospice care. Though not diagnosed with dementia, mom frequently has “adventures,” during which she believes she has spoken with dead relatives, taken a trip or had her life threatened. more complicated in ethnic communities, and especially for women of color. Finally, the work of caregivers, formal and informal, often is not valued enough to be reimbursed financially. For example, the Social Security program enacted in 1935 originally covered only workers reg- ularly employed in commerce and indus- try. Domestic workers were excluded. This historical policy decision contributes to a paucity of data on the economic con- tribution of family caregivers. Without data, policymakers can ignore an issue or make incorrect decisions about how to ad- dress it. Thus, family caregivers are invis- ible because of who they are (women, minorities), where they provide care (at home), how the work is valued (with no to low compensation) and how they are described (lack of data). What Will Make Caregivers Visible? Ironically, the same historical factors that make caregivers invisible will be the ones that soon make them visible. First, the nature of caregiving contin- ues to change rapidly. A recent AARP re- port demonstrates that caregivers now are responsible for providing intense and complex care ( tinyurl.com/y5qy36nh ), in- cluding pain management, with minimal support from healthcare systems. Howev- er, more health systems and policymakers are recognizing the need to integrate care-
to be mom’s primary caregiver after our family tried having our mom stay in assist- ed living facilities in the Atlanta area for al- most two years. But mom required more care and companionship than an assisted living facility could provide, and a nursing home seemed premature at the time. Susie is divorced and is the oldest daughter in a family of six children—three boys and three girls. My family and two of my brothers live outside Atlanta, Ga. Our other sister lives outside Washington, D.C. Most of Susie’s four young adult chil- dren live in Pennsylvania.
SusieMorrell, left, with her sister, the author.
Mom’s only living sister and her fam- ily have a cabin across the lake and visit, providing meals when they are “up north.” My little sister and I come up three to four times a year, separately, to givers into care planning. This is partly evidenced by the passage of bills like the CARE Act (in 42 states), which outlines requirements for the identification of fam- ily caregivers in hospital records and their inclusion in discharge planning. Policymakers are more attuned to re- search, showing that caregiver support is
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I see caregivers › continued from page 1
adults as well as parents or grandparents, all while working and maintaining a household. These caregivers are begin- ning to ask for more flexible workplace policies, such as job-protected paid family leave or affordable long-term-care options, to offset the challenges of family care. Finally, there are projected shortages ( tinyurl.com/s4cp3as ) of paid caregivers and decreases in family sizes for the next decade, factors that will expose the defi- cits in our nation’s caregiver support sys- tem. The coming decade all but assures that policymakers not only will see care- givers, but also they will hear them, as caregivers become more vocal about their needs. Looking at these trends, soon it will be- come impossible for caregivers to remain invisible. Perhaps this is why I was not sur- prisedwhen I saw that “TheMandalorian” was depicting an atypical family caregiver. Just think, 2020’s favorite TV caregiver is Mando, a single male caring for a 50-year- old orphan (aka Baby Yoda). n Donna Benton, Ph.D., is an associate re- search professor of Gerontology at the USC Leonard Davis School of Gerontology in Los Angeles. Benton also directs USC’s Family Caregiver Support Center, is a Senate ap- pointee to the California Task Force on Family Caregiving and a member of the California Master Plan for Aging Stake- holder Advisory Committee.
Prior to the 1960s, most people died from acute disease or trauma rather than from multiple chronic conditions (includ- ing Alzheimer’s disease and other demen- tias). Therefore, care was not prolonged or complicated and was primarily pro- vided in the home. As medical care and other factors helped people to live longer with chronic illness and as life expectan- cy increased, time spent providing care increased, as did the complexity of care- giving duties. The second trend occurring at the same time was that young, primarily white women joined the workforce but re- mained responsible for the care of family members and expected household duties. Therefore, women’s responsibilities and time for family care also became more complex and demanding. Another trend not often mentioned is that as women moved into the workforce, for those who could afford it, some care- giving work they had been doing shifted to paid caregivers, which were generally mi- nority women. This shift further hid the significant changes in how families pro- vided care to adults needing help. For eth- nic caregivers, the intersectionality ( tiny url.com/y4ngco5t ) of work, poverty, gender and race is partially responsible for the health disparities that make caregiving
‘The typical profile of the caregiver has changed.’
vital to help contain healthcare costs. Therefore, more funding has been given to national caregiver support programs. Additionally, some states have introduced legislation that looks at ways to improve long-term-care services and supports, which can relieve some of the fiscal costs associated with chronic care needs. Second, the “typical” caregiver profile has changed. While still mostly female, more studies show an increased number of menwho are providing caregiving ( tinyurl. com/wjqbdgp ). Ethnic, generational and family size demographic changes mean that more people are having to provide caregiving and are looking for information and support across all generations. Third, more caregivers are describing themselves as part of the “Sandwich Gen- eration” ( tinyurl.com/upg8b8c ), meaning they are caring for young children orPage 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16
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