Good news! We will, most of us, live to a ripe old age!
The other half of the story? Most of us will also live with disabilities and medical conditions that make it impossible to be fully independent. For most of us, that period will last more than a year (the average is about 3 years). Many of us will spend a substantial part of that time in some sort of facility that provides supportive services: a nursing home, an assisted living facility, or housing with services. Many readers will already have served as caregivers to older and increasingly disabled elderly relatives and will have experienced the challenges that come with living a very long time, accumulating chronic maladies and worsening disabilities. We know what it means to get that midnight phone call that Mom has fallen or left the stove on; we know the stress of trying to arrange a morass of services (and pay for them); and we have lived with the stress of trying to work, care for ourselves and our children, and help our parents.
We would also prefer, if we could, to live more like Bruce Springsteen, crowd surfing at 64; Tina Turner, still belting it out at 70; or George H.W. Bush, skydiving at 90—and then die rather suddenly, from an accident or a massive stroke. These things do happen, but they are rare. For most of us, life will be more mundane, and those last years will be more challenging. To be sure, we will usually continue to find meaning and pleasure in our daily lives, but we are also likely to confront physical and cognitive disabilities and medical conditions that make it impossible to be fully independent. This is a new phase of life, one that few of us had just half a century ago. We have earned it through better living conditions, health care, and prevention for most of our lives. Now we mostly get to keep going into old age, gradually accommodating to multiple chronic conditions and lack of reserve and propped up with an array of medications, treatments, and supportive services.
How clearly have you thought about how you’d want to live that part of life? What services and facilities are available in your community? What could you do to make that part of life meaningful and comfortable, without bankrupting your family or the broader society?
Most Americans simply don’t think about that part of life for themselves, even while they are providing care for a family member going through it. Somehow, we think that a frail elderly person’s experience is an unfortunate aberrancy, not an expected part of life. Despite our experiences, we believe that it is just bad luck to end up needing personal care or having to move to a nursing home. That attitude will not serve us well; denying our aging will not prevent it.
When it comes to aging, times have changed. Just a century ago, most Americans were still living in farm communities, where houses had room for an older person and someone was almost always at home. Now family members facing the inevitable crisis that comes with having to care for a sick or disabled elder quickly realize that the apartment has no spare bedroom and no one is home to provide 24/7 care. Furthermore, we did not build our homes with the idea that we might actually grow old and die in them. The stairs are numerous and steep, bathrooms and hallways are too narrow for walkers and wheelchairs, and bedroom communities have no access to transportation. We need a period of deliberate redesign. Just like the story of maladapted housing, we need to redesign medical care, finances, and family life so that frail elderly people can live meaningfully and comfortably at a sustainable cost to families and society. The period of frailty in the last years of life has not been a target of public policy; that phase is shaped by policies adopted for different purposes and priorities, and they do not fit with our current societal needs.
Nursing homes are where many of us will live for months or years near the end of life. Most people will need a nursing home for short-term recovery after a hospitalization, but you’re also likely to need a nursing home or other supportive housing for chronic care for some period. Many factors will lead you to a nursing home: You need more skilled nursing care than can be provided in your home; your judgment is so poor that you require constant supervision; or your home and social network are inadequate, abusive, or overburdened and collapsing under the weight of your full-time personal care. In short, the characteristics of the nursing homes and congregate “senior housing with services” facilities that your community offers are very important. The quality and commitment to those services and to providing attractive options should be part of the reputation of communities, just like schools, parks, or transportation. We envision a time when advertisements for homes will say, “Already adapted for disabilities. Neighborhood offers excellent supportive services at home and senior living options for later life!” That is where the market will be.
Under our current system, a frail elder may not be able to live safely at home, if they even have a home; yet other options may not be available, appropriate, or desirable. What is it that we provide? Lots of medical care. Your doctor can order up virtually any drug, device, diagnostic test, or treatment, and we spend twice as much on medical care as other developed countries do. But at least until you are utterly impoverished, we expect you and your family to provide for food, housing, personal care, and meaningful activities. We spend less on social supports than virtually every developed country, and it shows! For more on this topic, see Elizabeth Bradley and Lauren Taylor’s analysis. You can get surgery but not supper, and your family can get pills but not help with bed baths—at least not until you have no assets left and qualify for Medicaid, which will provide a nursing home at bare-bones rates. Most older women and many men live in poverty, some poor throughout their lives but many are made poor by the costs of a spouse’s last illness and then by their own.
We can do better, surely, than this. It won’t be enough to refinance current care; doing that will cripple the economy and still serve up undesirable, inappropriate, and expensive services. It won’t be enough to do research to push back various specific illnesses; the body still has to give out, and giving out from multiple chronic and worsening conditions is what we will face.
We need to examine and test bold policy changes that enable very different financial and care delivery models. We need to learn much more about what well-informed and thoughtful people really want while living with frailty. With a period of learning to develop and sustain a new model, we can meet the challenge of the expected more than doubling of America’s frail elderly between 2010 and 2050.
A Vision for Local Management of Reliable and Person-Centered Frail Elder Services
Our solution is to allow leadership communities to build new models of financially sustainable community-based services that include the entire continuum that elders often need. We envision a local (municipal or county) management structure that integrates services and funding; monitors quality and supply; and acts to improve service capacity, financing, and quality. This structure would enable agencies providing housing, meals, transportation, recreation, day care, foster care, assisted living, home health, respite care, nursing home, post-hospital care, and medical care to work together to assess supply and quality; generate savings (compared with current expenditures); and prioritize investments of community, state, and federal resources. This local entity, which could be governmental or a governmentally endorsed coalition of private organizations, would manage toward the optimized structure and balance for their own unique community. It turns out that they could start with savings from waste and low-value medical care in this population, though the rise in the number of elderly will probably make it necessary eventually to provide additional funding from private savings and general revenues. Publicly available data in local dashboards would guide local policymakers, and states would oversee and monitor implementation, including inspecting across settings to assess the quality of care, the safety of transitions, and the appropriateness of decisionmaking and use of funds.
Careful and thoughtful local (city and county) planning is a critical component of this new model. For example, communities building for their own futures might well require nursing homes to be located at the center of the community, not out in the country and away from community life. Nursing homes are themselves communities, but they need to be situated within the larger (city/town) community structure to remain vibrant and meaningful. Visiting a nursing home (and commuting there for low-wage employees) needs to be easy and inexpensive. Communities will mostly want nursing homes to be co-located near child daycare, shops and restaurants, the library, and schools so that residents can easily go out to lunch or religious services and so that volunteers and families can visit easily. There needs to be bidirectional integration of frail elders and people with disabilities into the heart and soul of the greater community.
Older institutional buildings efficiently provided the basics of housing and meals, but now the buildings themselves are too barren and unwelcoming to encourage community integration of frail elders with disabilities. Clearly, closing all undesirable older nursing homes and building new home-like congregate housing isn’t economically feasible in the near future. However, Medicaid state plans and other state programs, such as those in Ohio and Georgia, have given states and communities the flexibility to convert older housing stock into affordable housing options tailored to better meet the needs of specific communities (see the Georgia Service Options Using Resources in a Community Environment program. Some older buildings could be repurposed, for example for adult daycare, dialysis centers or the Program for All-Inclusive Care of the Elderly. Communities could redeploy some existing nursing home revenues to create community-based programs that support people living at home longer.
Program and policy changes must proceed along with changes in attitudes about frail elders and people with disabilities. Some people do live full, rich lives with significant chronic illness, with the right supports and care (for a reasonable cost). For example, some elderly people living with dementia in their own homes are monitored for falls and safety by using sophisticated technology, enabling independence for another few months or years despite significant physical and cognitive challenges. People with serious mental illness may be able to live in group homes or foster care if staff are properly trained and supervised to address their needs. Supporting each person’s active engagement in their own daily lives through individualized assessment and care planning must become standard across all settings in order for people to live their lives as meaningfully as possible. Care plans for each frail elder in a community also serve to enable community planning by readily providing the data to guide service supply and to detect quality problems.
With all these issues, why wait for someone else to advocate for improving our systems of care? Grassroots community activism still works! Indeed, that is all that is likely to work, since moneyed interests and government inefficiencies contribute to the current waste and chaos. A highly supportive system would send less money to drug companies, insurance plans, and hospitals and focus those resources on community long-term services and supports (LTSS). In order to promote that redeployment of resources, here are some specific actions you can take now in your own community:
- Get 10–15 people from your community together and raise your voices to your legislators.
- Call the mayor’s office and the local town council members’ offices, and ask what is available in the community for effective LTSS.
- Many communities have a commission on aging or a similar coalition, which is usually underfunded and has little authority. Your group can energize that entity and increase its budget, its agenda, and the forcefulness of its demands.
- Get to know your local area agency on aging, your state Medicaid director and medical director of the Medicaid program, and local groups concerned about retiree well-being and specific conditions like Alzheimer’s disease through your Alzheimer’s Association or State Coalition to Improve Dementia Care (DNH_BehavioralHealth@cms.hhs.gov).
- Develop a coalition agenda, including a state waiver of obstructing regulations and an appropriation to develop and pilot-test new models of coordinated care in a few communities in your area.
- Offer to work on your state plan to address Alzheimer’s disease (part of the National Alzheimer’s Strategic Plan).
- Advocate for a pilot test in which selected communities have the flexibility to use a portion of saved funds or to raise funds for supportive services such as respite care, meal delivery, housing adaptation, and care planning.
- Encourage employers to have flexible working arrangements and leave for employees to provide elder care.
- Press legislators to make it possible for taxpayers to purchase reasonable long-term care insurance.
- Use Facebook, Twitter, and other social media to get people involved.
If all this seems like a lot of effort to you, remember that in old age, you too will be only one injury, accident, or medical event away from being a disabled elderly person. You or someone you love will need to live in a nursing home or some sort of housing with services. Go visit your local facilities. Ask what they need in order to be more appealing and reliable. Talk with your community- and faith-based organizations, and demand more from our civic leaders. Of course, also protect yourself with savings, good relationships with family and neighbors, and attending to your living situation as you age. But get angry when the cuts in Medicaid lead to cuts in staffing at your local nursing home or your local assisted living center is found to ban physician house calls. We cannot allow nursing homes and other housing with supportive services to drift into the backwaters of our attention and slide into warehousing us when we are old and frail.
We can create the circumstances in which we can grow old with grace, comfort, and meaningfulness, but only by paying attention now.
Alice Bonner is an associate professor of nursing at Northeastern University in Boston. Joanne Lynn, MD, is director of the Center for Elder Care and Advanced Illness at Altarum Institute in Washington, DC. For more information, go to http://medicaring.org/.