What We Know to Do Won’t Be Done and Wouldn’t be Enough! (But We Could Make Eldercare Work!)
by Joanne Lynn
Our aging society is a mountain to be moved – a large collective challenge we have to tackle together. Problem is, right now we’re using shovels when bulldozers would hardly do the job.
The mountain is reforming how eldercare is delivered and funded. We’ve allowed so many forces to converge over the years in a payment-driven, provider-centric framework, that we’ve managed to create a grim future for the last phase of aging. Most of us will have at least a couple years of self-care disability in the last years of life, no matter how healthy our life styles may become. While “healthy aging” is a terrific idea, it is one that eventually fails in most lives, simply because some form of frailty will still disable us, for a long time, and presage death.
Families are smaller, older, and more dispersed – there is often simply no one able to provide free care at home. Retirees have ever lower savings and insurance, overwhelmingly too little to pay for an expectable range of personal care. Medicaid is stretching state budgets and many more are set to spend down to eligibility. Communities have no entity actively monitoring and managing the performance of their unplanned and poorly coordinated eldercare arrangements. Serious illnesses and disability in old age is the dominant cause of family impoverishment and bankruptcy. Paying current per capita costs by raising taxes is not plausible by the mid-2030s [National Research Council. 2012. Aging and the Macroeconomy: Long-Term Implications of an Older Population. Washington, DC: The National Academies Press. https://doi.org/10.17226/13465] – we will find ourselves balancing crippling the economy with abandoning dependent patients. Being able to support an expansion of public services and supports to accommodate more elders in need depends upon a thriving economy, and that depends upon highly productive young adults. Yet we now have half of children born into poverty and we tolerate high rates of young adults being unprepared for productive work.
Many issues compete for our attention. Why bother with dealing with old people? Two pragmatic reasons: old people and their children vote, a fact that makes it unlikely that elder care issues will be abandoned; and all of us will eventually join that cohort, a fact that makes it everyone’s issue. Furthermore, we really are part of a community, and we really won’t be able to ignore a retired school teacher’s homelessness, the gnawing hunger and painful isolation of a former jazz musician. Our better natures will require making basic needs available on a reliable basis.
In 2016, our team at Altarum worked with other national partners to push for caregiver planks in state and national party platforms — 11 states included a plank as well as having the issues show up for the first time in both Democratic and Republican national platforms. [Scribner, B. et al. (2017). Creating A Nationwide Nonpartisan Initiative for Family Caregivers in Political Party Platforms. J Am Geriatr Soc, 65: 1126-1131. doi:10.1111/jgs.14814] A key finding of voter polling work in this project was that voters of all political persuasions are energized and passionate equally about the needs of caregivers and supports that ought to be made available to families.
But how? The costs look to be overwhelming. The effects upon the economy and the opportunities for younger persons look to be disastrous. It is so much easier to duck and run – answer to the immediate issue but make no fundamental changes. There’s a better way.
Our arrangements for medical care assumed that people are mostly healthy and on their own, and from time to time they need medical care to return them to health. In frail old age, the question is not mostly to “fix it” but to “live well with it.” In this setting, continuity, care planning, and caregiver support matter – three elements that are mostly missing in our current health care. We need to dramatically reorganize health care to require these elements as essential in elder care.
What happens to support frail elders depends critically upon the arrangements for support in their geographic community. Is disability-adapted housing available and affordable? Can you get appealing and affordable home-delivered food? Is there an adequate workforce skilled in handling personal care at home, even for persons with dementia and persons who are difficult to serve? Do the dominant employers provide flexibility for family and volunteer caregivers? Are there volunteers organized to fill in most “instrumental activities of daily living,” such as minor home repairs and delivering food? Perhaps most important, is there an entity with the responsibility to address these issues – to monitor performance in that community and take steps to improve it?
With many communities doing this, communities would be able to benchmark performance and manage the arrangements in their community. Lots of independent businesses would still thrive, but collective action would also be possible and practices that distort service availability or quality could be constrained. Altarum developed a Financial Forecasting Tool [https://medicaring.org/2018/07/24/mcforecasting/] that can help communities understand the resources they already have — medical and health services, social services, community volunteer organizations, and others — and quantify the possible savings a reformed system of eldercare can produce. There is a lot of money being spent in the period when elderly persons live with serious disabilities, but it is not being used in planned, efficient, person-centered ways.
This is a more fundamental reform than just moving medical care to the home or providing coordinated post-hospital care, or whatever combination of currently “evidence-based” improvements you prefer. This is making some part of elder care into a public concern, managed at the community level. It is not just for dual-eligible elders, it is not just for persons who run up high bills, and it is not just for persons with particular diagnoses. This reform is for us all. We’ve called it MediCaring Communities. [https://medicaring.org/book-online/]
We must work on financing and service delivery at the same time. If we started now to build private savings for long-term care (through savings accounts or insurance), we’d have capital to stimulate the economy as well as less demand for public funding in fifteen years. Having a federal back-stop on long term care costs would create a vibrant marketplace for long-term care insurance. Professionalizing assistance with personal and supportive care would create better paying jobs in the care sector and these professional caregivers would be able to build a new middle class around eldercare professions, thus boosting, rather than draining, local tax bases. Planning for the whole populace also requires substantial reinvestment in ensuring that our children come into adulthood as highly productive citizens.
This is our opportunity time. If we buckle down and enable substantial innovation in some counties and cities, we’d learn what’s possible and other counties and cities would follow suit. We urgently need an era of profound and far-reaching innovation and learning. What can you do make it possible to overthrow the status quo? Be in touch with one another and with us – let’s dramatically increase the pace of improvement and build an elder care system that is highly reliable and efficient and build it in time to accommodate the rising numbers of disabled and frail elders.