Prepared by Janice Lynch Schuster, MFA; Joanne Lynn, MD, MA, MS; and Judy Peres, LCSW, The Center for Elder Care and Advanced Illness at Altarum Institute.
America’s Age Wave offers tremendous possibilities for our society and for our citizens: to reflect on experiences and knowledge gained, to contemplate and build on meaning, and to contribute to the experiences of other generations. But as much as we aspire to having long lives, those of us who survive into our eighties and beyond are also likely to experience problems we would rather not consider: most of us will end up living for a few years with several conditions that leave us disabled and dependent on others for our daily care. Many of us will endure living with dementia: one in eight Americans over 65 now lives with some form of dementia. In the group over the age of 85, nearly half will live with dementia for some years (2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association; 2009 is the most recent version available online). And most of us will face the long-term consequences of having multiple chronic conditions, such as arthritis, diabetes, and heart disease.
We will encounter a health care system that is simply not designed or equipped to care for very frail older people. Although that system is well-suited to save us from heart attacks or enable us to live with diseases like cancer, it is ill-prepared to serve very old people. Those considerably advanced in years continue to have very basic needs: adequate food and nutrition, safe homes, reliable transportation, and people who love and care for us. Yet in late life we are likely to need help with these things and then to encounter unreliable yet very expensive services, experience medical errors, struggle to find and obtain what we need, and bankrupt ourselves and our families. The numbers amount to a bleak perspective on our futures:
- More than 70 percent of Americans over the age of 65 will need long-term care services and supports at some point in their lives.
- Although one-third of today’s 65-year olds may never need long-term services and supports, 20 percent may need such services for more than 5 years.
- Women are likely to require daily support from another person for more than 3 years; men, for a little more than 2 years.
Aging Boomers will double the number of people who live into old age: by 2025, millions of them will have aged into a period of frailty. In previous generations, someone - most often a female relative - would have cared for the few who lived so long. But family composition is not what it once was, and many Boomers will not have relatives and friends to care for them. And many Boomer women did not marry, or did not have children; half of women over 75 today live alone. These realities mean that we need to find new ways to care for frail older adults, helping them (and the rest of us in the future) to experience and enjoy comfort, meaning, and connection until the very end of life.
The Effect of Frailty
Despite pop culture’s insistence on eternal youth and its companion, anti-aging, the reality is that people grow old. And although people tend to have just a few images of what aging entails - that we might all be as cute and spry as Betty White - the fact is that aging has a thousand different faces. The old represent tremendous diversity and complexity, and their needs, preferences, and experiences reflect that, too. Some people now divide aging into different stages, and define a trajectory in which people move from young old age (around 65 or so), to old age (80ish), to “old old” or advanced old age (frailty and disability during old age).
As people progress through these stages of aging, their abilities and needs will change. The young old, for example, are likely to look to retirement or towards “encore” careers, as opportunities to contribute in new ways to their communities and to maintain a sense of purpose. At this juncture, many “young old” find themselves caring for their “old old” parents, family, and friends. For some, this is the start of their realization that certain services, such as hospice and palliative care and home health, are essential. Programs that encourage attention to conversations about the end of life, such as The Conversation Project and National Health Care Decisions Day, take on new meaning and urgency.
The next group includes old people who begin to experience consequences of various chronic conditions, and so find themselves experiencing more and more time on the health care circuit, trying to manage conditions, prevent worsening situations, and cope with the many challenges they face. Some individuals also turn to different elements of the long-term services and supports in their community and avail themselves of different living arrangements, such as assisted living facilities, or programs offered by the aging services network.
Finally, those who live long enough to be “old old” face additional needs and challenges - often for the most basic services and supports for adequate nutrition, safe housing, reliable transportation, and consistent caregivers. For such old people, especially those struggling with disability and dementia, community-based services and supports become essential. These individuals, and their family caregivers, need programs that offer in-home supports, for instance, and strategies to coordinate care as they move from one health care setting to another.
Innovation in serving older adults can be found everywhere, evidenced by everything from tremendous federal investments to improved care transitions (and so to improve patient care while preventing avoidable hospitalizations), to locally-sponsored volunteer programs. Much more effective design is needed if we are to care for the millions of Boomers now aging into this phase of life.
Areas of Focus for Funders
To date, funders have invested significantly in a few key issues, most notably in improving end-of-life care, in which shortcomings and failures were rampant. To that end, the Robert Wood Johnson Foundation and the Open Society launched large-scale projects in the late 1990s and early 2000s. Those efforts led to greater awareness of problems, and to the spread of palliative care and hospice services. At the same time, however, hospice’s intense focus on the short period before death does not cover the years before death in which people live with increasing disability. Excellent supportive care for geriatric patients offers promise and hope, but public policies must change to make these changes happen. And in the meantime, ongoing shortages in the eldercare workforce present a real barrier to improved care.
Other grantmaking organizations that have focused on frail elders include The Commonwealth Fund, which awards grants to help improve long-term services and supports for frail elders, particularly those covered by Medicare and Medicaid and those transitioning from one level of care to another. The California HealthCare Foundation focuses on improving clinical outcomes and quality of life for people with chronic disease and reducing barriers to health care for the underserved. The Archstone Foundation and the Jewish Healthcare Foundation have both targeted grant funding on the issue of improving palliative care.
Some philanthropic funding has focused on issues of affordable and safe housing, adequate nutrition, and professional training - but more focused efforts that encompass all of these needs may be needed to improve the experiences of people living with the frailty of late old age.
1. Support family caregivers
Family caregivers are essential to the workings of the health care system for older adults. Without this tremendous investment of time and resources, the already-fragile system of care for frail elders would fail. PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of such caregiving. If family caregiving were a federal agency, it would be the 5th largest.
The reality of family caregiving has been with us a long time, but the need to find better ways to support caregivers has only recently gained prominence. A 2012 study from the United Hospital Fund and AARP reported that nearly half of family caregivers provide complex medical care to loved ones - usually, with little or no training in how to do things like manage medications, clean wounds, change IVs, and more.
This kind of information is propelling organizations to focus more attention on the needs and experiences of family caregivers. In addition, advocacy groups continue to push legislators for programs and policies that will meet the needs of caregivers, providing them with the kinds of economic and social supports that ease their burden.
In the face of ongoing national economic challenges, many promising programs and organizations around the country continue to turn to philanthropy to support their work. Myriad efforts are underway, and the following list is simply illustrative, not comprehensive:
- Next Step in Care: A project funded by the United Hospital Fund in New York, this effort provides online modules and training materials to enable family caregivers to understand the health care system, and to work as partners within it.
- Caregiver Action Network: For nearly 20 years, CAN has provided support, resources, and opportunities for family caregivers. Funded by a coalition of pharmaceutical firms and businesses, CAN is a grassroots effort aiming to improve life for caregivers.
- EmblemHealth Care for the Family Caregiver: Launched more than a decade ago by a New York State insurance company, this project offers information, support, and referrals, as well as online tools and resources to support caregivers and their loved ones.
Partners in Care: A grassroots effort in Annapolis, Maryland which engages older adults as volunteers to bank their time serving others. When they in turn need support for remaining independent and at home, Partners pairs them with volunteers who can offer companionship, help with chores, and transportation. Similar efforts are found in the Villages movement.
In an era of declining funding for the aging services networks, programs that help caregivers will be even more hard-pressed to find support for their essential work. Experts on caregiving can be found among the organizations listed above. In addition, the following organizations and leaders can provide insight and guidance to funders:
- Rosalynn Carter Institute for Caregiving: Laura J. Bauer, Director of National Initiatives
- AARP Public Policy Institute: Lynn Friss Feinberg, Senior Strategic Policy Advisor
- National Alliance for Caregiving: Gail Hunt, President and CEO
- Family Caregiver Alliance: Kathleen Kelly, Executive Director
- United Hospital Fund: Carol Levine, Director, Families and Health Care Project
- Caregiver Action Network: John Schall, Executive Director
2. Community mobilization
Communities and volunteers are organizing in clever ways to meet the needs of frail elders. Recognizing that no single organization can meet the growing demand for services for frail elders, public and private partnerships are emerging everywhere, led by government agencies, community-based organizations, faith-based groups, and non-profit programs. Some are well-known and long-standing, such as Meals on Wheels. Others are relative newcomers, like the idea to create a Caregiver Corps in which volunteers of all ages could serve older adults in their own communities. Each aims to improve life for frail elders and their caregivers, by building on existing resources, engaging volunteers, and using resources more effectively to meet the needs of frail older adults and their caregivers.
Some organizations and programs are adapting the Marshall Ganz theory of community mobilization: the I-us-now approach to generating change. The Obama administration used this theory in his successful 2008 run for the presidency. With I-us-now, community organizers build on individual stories to tell a collective story, and use stories as a basis for communicating the need for urgent change. Among the groups using this theory are ReThink Health, a program of the Fannie E. Rippel Foundation, and the Colorado Foundation for Medical Care. Both have found successful applications in community organizing efforts nationwide.
The following programs, models, and concepts all build on the potential for community mobilization and engagement to improve care for frail elders:
- MediCaring: A model that would rebalance medical care and community and social supports so that frail elders and their families could access what they need most: social services and supports, continuity of care, reliability and consistency of care, and comfort and safety. MediCaring would ensure development of a care plan for each frail elder: a plan that describes not only medical problems and treatments, but the entire scope of services and situations, as well as the likely course over time. Savings from reducing unnecessary medical care and over-treatment would be rolled into providing more effective community supports. The work is funded by Altarum Institute and led by its Center for Elder Care and Advanced Illness. A book on MediCaring, funded by the Milbank Foundation for Rehabilitation, is now being written. Several communities nationwide are testing the approach, which would be grounded in local authorities to monitor, manage, and evaluate the system. A brief overview appeared in a November 2013 issue of JAMA, which focused on critical issues in American health care.
- Caregiver Corps: An idea to build a corps of community-based volunteers of all ages who would work with aging services networks and other stakeholders to support frail elders and their caregivers. Since launching a White House petition to promote the idea, Altarum Institute has received an outpouring of ideas, suggestions, and offers to participate in developing pilot projects to test the feasibility and sustainability of such a project. As yet unfunded, a core group of activists continues to explore ways to build a model to be tested in several communities.
- Villages: Launched in Boston in 2001, the Village movement describes an array of “membership-driven grassroots organizations” that help members age in place. Villages are a mix of volunteers and some paid staff. Members volunteer time to help other residents, accumulate that time in a time bank, and redeem it when they, too, require help. Villages help people find services that range from transportation to health and wellness programs. A national organization, Village2Village Network, helps Villages connect with and learn from one another. To date, more than 120 Villages operate in the US and abroad. The network is sponsored by Capital Impact Partners and The Beacon Hill Village with funding from MetLife Foundation.
Interested in learning more about these programs and ideas? The following links point to a few leaders from each:
- Candace Baldwin, director of strategy for aging in community, Village2Village Network
- Jane Brock, MD, medical director, Colorado Foundation for Medical Care
- Marshall Ganz, senior lecturer in public policy, Harvard University
- Janice Lynch Schuster, senior writer, Center for Elder Care and Advanced Illness
- Joanne Lynn, MD, director, Center for Elder Care and Advanced Illness, Altarum Institute
3. Housing with services
Advancing age and the complications of frailty can make independent living a challenge for frail older adults. The development of housing with services is a new trend that aims to bring health and supportive services to affordable senior housing communities. Proponents believe that this model will offer a cost-effective strategy for helping low-income elders age in place as they face chronic illnesses and frailty.
Such services address a burgeoning need, especially for the millions of older adults who live in poverty and in public housing. An estimated 2 million elders live in publicly-assisted housing, mostly low-income single women over the age of 70. The U.S. Commission on Seniors and Affordable Housing (2002) estimated that 1/3 of subsidized renters have difficulty performing at least some Activities of Daily Living. In addition, 3.6 million seniors are living below the poverty level. The HUD 2009 Worst Case Housing Needs study reported that 1.33 million seniors paid more than half of their incomes to meet housing costs and/or were living in moderate or severely inadequate housing.
EngAGE provides opportunities for low-income senior residents of affordable housing to participate in creative activities that range from mentoring school-aged children to producing independent films. Founded in 1999, the non-profit serves older adults throughout Southern California, offering them free programs to enrich their lives and experiences. Among its many funders are the Weingart Foundation, the Annenberg Foundation, and the MetLife Foundation, as well as a score of businesses, large and small.
LeadingAge, through its Center for Applied Research, is working with HUD and Congress to research programs to explore just how effective housing plus services are, particularly in terms of providing affordable housing for low-income elders, and offering them the opportunity to remain independent and in their own homes.
The Multifamily Housing Service Coordinator Program allows multifamily housing owners to assist seniors living locally or in HUD-assisted housing to “obtain needed supportive services from the community.” The program provides grants to owners of HUD-assisted housing, enabling them to hire service coordinators, who can assist residents with an array of services, from case management and referral, to advocacy and community association organizing.
Project CAPABLE (Community Aging in Place - Advancing Better Living for Elders), funded by NIH, CMS, and the Robert Wood Johnson Foundation, provides home-based interventions that enable low-income older adults in Baltimore to remain in their own homes safely. Services are designed to improve mobility and functionality, and to adapt the home to the resident’s needs and abilities. In addition to visits from an occupational therapist and a nurse, residents can also get an assist from handyman services, available to make small repairs and modifications that improve safety and well-being. A team of researchers at Johns Hopkins University is tracking the project to assess its effect.
Source: The Center for Elder Care and Advanced Illness at Altarum Institute April 2014
As with people at any other stage of life, aging people are not all the same - just as ‘tweens have interests quite divergent from teens, so, too, very old adults have very different priorities than their slightly younger counterparts. (In fact, recognizing this, AARP even produces three different versions of its magazine: one for folks under 60, another for those between 61 and 70, and a third for the oldest old.) And while books abound about younger cohorts of older people, resources on the very old can be harder to locate. For those wanting to learn more about these issues, the following books are excellent places to start:
A Bitter Pill: How the Medical System is Failing the Elderly (2009) by Dr. John Sloan: A Canadian geriatrician does an engaging and insightful job of describing just what happens to the very old when they hit the medical system. Specific to Canada, but relevant to Americans.
Behind the Old Face: Aging in America and the Coming Elder Boom (2012) by Angil Tarach-Ritchey, RN, GCM: An American nurse describes her encounters with patients in the health care system, and maps out a system that might improve the state of affairs. Well written, and a finalist for an Indie Book Award from Next Generation.
Sick To Death and Not Going to Take It Anymore!: Reforming Health Care for the Last Years of Life (2004) by Dr. Joanne Lynn: Describes failures in the current system of care for frail elders, and proposes improvements and changes.
The American Health Care Paradox: Why Spending More is Getting Us Less (2013) by Elizabeth H. Bradley and Lauren A. Taylor: Examines patterns of medical spending and expenses, in contrast to what is spent on social services and supports, and how other countries spend and manage.
Online Reference Materials
Presentation slides from webinar on “Changing Care for the Frail Elderly,” Dr. Joanne Lynn, Center on Elder Care and Advanced Illness, Altarum Institute.
“Fraility is a Medical Condition, Not an Inevitable Result of Aging,” Marlene Cimons, LiveScience, Nov. 29, 2013.
“The State of Aging and Health in America 2013,” National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control.
Organizations that Focus on Frail Elders
AARP Public Policy Institute Informs and stimulates public debate on the issues we face as we age. The Institute promotes development of sound, creative policies to address our common need for economic security, health care, and quality of life.
Administration on Community Living: Charged with coordinating Federal programs addressing the community living service and support needs of both the aging and disability populations, ACL enhances access to quality health care and long-term services and supports for all individuals, and promotes consistency in community living policy among Federal agencies.
Altarum Institute’s Center for Elder Care and Advanced Illness: Led by Dr. Joanne Lynn, the Center aims to “make it safe to grow old” by promoting and studying ideas and strategies focused on delivering better care and services to frail elders and their families, and ensuring that individuals and communities can sustain and bear that cost.
The Center for Medicare Advocacy: A national nonprofit, nonpartisan organization that provides education, advocacy, and legal assistance to help older people and people with disabilities obtain fair access to Medicare and necessary health care. It focuses on the needs of Medicare beneficiaries, people with chronic conditions, and those in need of long-term care. The organization is involved in writing, education, and advocacy activities of importance to Medicare beneficiaries nationwide.
Community-based Care Transitions Program Mandated by the Affordable Care Act, CCTP tests models for improving care transitions from the hospital to other settings and reducing readmissions for high-risk Medicare beneficiaries. The projects aim to improve transitions from the inpatient hospital setting to other care settings, improve quality of care, reduce readmissions for high-risk beneficiaries, and document measurable savings to the Medicare program.
Community Catalyst: A nonprofit whose mission is to organize and sustain a powerful consumer voice to ensure that all individuals and communities can influence the local, state and national decisions that affect their health. Works with partners at all levels of government and in public and private sector to address specific issues, including the chronically ill, Medicare beneficiaries, Medicaid recipients, and the dually eligible.
Consumer Voice Dedicated to ensuring that the voices and experiences of residents, patients, and loved ones are heard in shaping policies that affect long-term care, and advocating for polices and programs that strengthen those services. Recently launched a consumer-focused website to provide people quick access to relevant information.
National Council on Aging The nation’s leading nonprofit service and advocacy organization representing older adults and the community organizations that serve them, NCOA focuses on enhancing economic security, improving health, and advocating for older adults.