I’ve been absent from my blog during the 2016 political season, mostly spectating on the dismal national scene, but increasingly active on the local level around a critical issue that is briefly mentioned in Touched by Fatality. For adults experiencing functional decline, there is an urgent need to reduce costs of care and improve quality of life. This is bordering on a crisis situation with profound human and economic consequences. We must delay dependence and better serve the growing numbers of adults who require assistance with Activities of Daily Living (ADLs)— eating, bathing, dressing, mobility, continence, and cognition—as well as ensure that they are receiving appropriate management of medical conditions and are socially engaged.
Why do I believe that a focus on the needs of aging seniors is important? My motivation is not because I am in this group and feel that “we worked hard all our lives and deserve respect.” In crassly practical terms, it’s because caring for full size humans with complex medical needs is incredibly expensive in both direct and indirect ways.
Those at the policy level in Oregon may congratulate themselves that they’ve shifted caregiving for dependent adults from costly (and often depressing) nursing homes to home and community-based care and that most of the care is provided “free” by family caregivers. But nothing is free. Family caregivers often suffer physical, emotional and financial consequences. Adult children may have to reduce hours, forego job advancement or leave the workforce altogether, meaning that they generate less taxable income. They often pay out of pocket for expenses for their parents and are less able to save for their kids’ education or supervise their development. Frail elders caring for a spouse or friend often see their own health deteriorate, generating more healthcare expenses.
Many experiencing declining health status will require paid care at some point, either in their home or after a move to a residential care facility. Someone has to pay for this, and it isn’t, as many think, Medicare. Private pay for custodial care can cost between $4,000 to $15,000 per month. Because of the recession, retirement savings took a hit, and personal funds are often quickly exhausted. As a result, entrance to Medicaid-funded long term care will occur earlier for many aging individuals. Public funds for long term care are stretched thin already and the eligibility criteria for receiving this support have become more stringent. In addition, because of low Medicaid reimbursement, few Medicaid beds are available in residential care facilities. Dependent adults are increasingly left to struggle on their own or with the help of exhausted family members.
We should focus, too, on the paid caregivers. These individuals, mostly working at minimum wage, often end up with incomes that require taxpayer subsidies for food and healthcare. Job stress and injuries from lifting large individuals can compromise their ability to work in this field or in others. Because caregiving is not a profession that has inherent appeal, the pool is dwindling as the economy recovers from the recession and better jobs become available. The resulting high turnover means caregivers often lack the training and on-the-job experience that would optimize their competency.
Care, as currently delivered, much less at the level needed, is not affordable for individuals or society. We all end up paying for care—whether out of pocket, in our taxes, from reduced inheritance, and in our quality of life. Whether paid or unpaid, the care of dependent adults is causing a wealth and resource shift that robs younger generations of support for their needs, both financially and developmentally.
Across this backdrop, on both an individual and societal level, there is a widespread lack of financial and practical preparedness for providing and receiving care. Few in my generation have planned for an extra 15-20 years of existence, and for living longer with impairments, yet most won’t avoid dependency: 70% will need care. Women typically need care longer (3.7 years) than men (2.2 years) and are more likely to live alone, without support in their home, at the end of life. This is both sad—and avoidable.
We must encourage preparedness for all phases of functional decline, address the scarcity of navigation services for individuals needing appropriate care plans, and solve the mismatch between the caregiving resource (both paid and unpaid) and the need for care. Caregivers need better training to avoid injury to themselves and to prevent exacerbating the health status of those for whom they are caring. We need greater utilization of home design, home modifications and technology that would enable adults to remain in their homes as long as these residences serve their physical and social needs, and we need new models of congregant living in which care can be delivered more efficiently and effectively, with greater respect for personal autonomy and dignity.
Cost for senior services must be framed in terms of what not providing services will cost. Consider that almost all of us will need to provide or receive care. Consider the specter of homeless grannies.