BY JEFFREY LEWIS AND FRANCESCA RINALDO, MD
In 1984, former U.S. Sen. John Heinz told the National Association of Home Care that the long-term care crisis America faced could not “be resolved by one legislator alone; it requires the full attention of the American people and Congress.”
Almost four decades later, Congress continues to ignore the mounting long-term care crisis facing too many middle-class Americans in addition to their counterparts. The situation has left the caregiving workforce fraying and collapsing. And we, as a society, have handcuffed our future because of congressional malaise and inaction. The long-term care tsunami is upon us.
Consider some of these real-life scenarios:
· Older Americans on fixed incomes must choose between paying for care they need and deserve and staying in their homes.
· An aging spouse who faces the daily challenges of caring for their life partner, often impacting their physical and mental health.
· Children of aging parents who struggle to afford the care required to keep mom or dad out of a nursing home. Too often, that means not setting money aside to buy a home, save for their children’s college education, or invest in their retirements.
Here’s another sobering fact with broad financial implications: Middle-class family caregivers are disproportionately women. They are the largest segment of America’s silent caregiving army. They shoulder the burden of rearranging their schedules, juggling doctors’ visits and prescriptions, squeezing in regular shopping trips, and performing essential housekeeping chores … all while caring for an aging parent. Women who leave the labor force early because of caregiving responsibilities experience an average of $324,044 in lost salary, Social Security, and pension contributions over their lifetimes. Those are dollars that they never make up
According to a 2020 AARP report, 42 million U.S. adults provide informal support and services to someone 50 and older. Many care for a spouse and many care for more than one person at the same time. The report estimates that the cost of replacing unpaid caregivers could exceed $460 billion.
Further, nearly 1 in 6 people above age 55 do not have children, leaving the long-term care responsibilities to their spouse, partner, or community. This need is compounded as more couples are expected to be childless and enter their golden years without family support.
Medicare provides limited in-home long-term care services that require the patient to have hospitalized first and their aftercare related to the post-hospitalization rehabilitation. As a result, middle-class elderly families and children of aging parents are stuck and have few options.
We think it is time to re-imagine what long-term care could be for the middle class.
A pilot program called Person-Centered Care (PCC) has been launched in the central California counties of Stanislaus and Merced. It is an effort to combat caregiver burnout and ensure that elderly middle-class families have access to community-based long-term care services. Individuals over the age of 55 and Medicare-covered adults with disabilities are eligible.
PCC was created to help the patient and their family or caregiver achieve the maximum level of independence while improving overall health outcomes. This also means improving interactions between patients and healthcare providers as well as caregivers and providers. Further, it means making certain that everyone involved in the patient’s care is fully informed about the care plan, the challenges, and potential obstacles and can be empowered to care for themselves and their loved ones both effectively and long term.
Best of all, there is no cost to qualifying patients or caregivers participating in the program. All services are funded through a grant from Legacy Health Endowment to Community Health Centers of America. The PCC program also is made possible by partners CareLinx by Sharecare, which provides a digital on-demand platform of tech-enabled care providers; Community Care Choices, a nonprofit Palliative Care Program of Community Hospice, Inc.; TIN Rx, a pharmacy in Turlock; and Community Health Centers of America, a federally qualified health center.
Our primary goal is to improve patient care, and health outcomes with services ranging from noncustodial support like respite care and homemaker assistance to skilled nursing care delivered right in the home.
A care plan will be created for each client based on their needs and those of the caregiver. For example, while a patient may need a nursing visit, the caregiver’s spouse or partner also may need a break, which respite care services can afford.
Caregivers play a significant role in the lives of aging adults. As invaluable figures in our lives and communities, we owe them the assurance that caring for a loved one will not place them in economic peril today or tomorrow or cause their physical and mental health to decline. Unpaid family caregivers perform heroic tasks far too often, yet many of those feats are unseen by those around them. Their roles embody altruism.
PCC is a valuable opportunity to recognize and address the in-home long-term care needs of individuals and their families and begin understanding the tangible and intangible costs of care as it occurs within and beyond the home.
Jeffrey Lewis is President and CEO of Legacy Health Endowment, a nonprofit healthcare grant-making foundation in Turlock, whose mission is to improve the health and healthcare of all residents living within 19 ZIP codes in Stanislaus and Merced counties. The views expressed are those of the authors.
Dr. Francesca Rinaldo is senior vice president of clinical product and innovation at Sharecare. CareLinx by Sharecare is the nation’s leading digital on-demand platform of tech-enabled care providers.