By the time many of us seek long-term care, we’re already in a crisis. A parent’s health crashes overnight, and their only option to remain safe is to hire 24-hour ’round-the-clock care. Or a loved one is diagnosed with dementia, and you’re forced to learn dementia care on your own—a complex undertaking made even harder while managing your fraught emotions.
Behind these challenges, based on true stories from my circle of friends and family, is the reality that our care system confuses so many people. Plus, many of us harbor misconceptions about the nature and accessibility of long-term care, which are quickly shattered when we learn the truth about its limitations. Here are some of the most common misconceptions about care:
“I won’t need long-term care.”
While many of us like to believe we’ll remain entirely independent forever, in truth, many of us will need support as we age and acquire disabilities, whether at home or in a congregate care setting like assisted living or a nursing home. Research shows that 56% of people turning 65 today will require some form of long-term care in their lifetimes, and 22% will need it for longer than five years. Further, the older adult population is booming, which means the care delivery system will also expand: the population of people ages 65 and older will surge from about 54 million in 2019 to 80.8 million by 2040 and 94.7 million by 2060.
“I won’t encounter too many problems finding or paying for long-term care.”
Anyone who has ever navigated the caregiving system for themselves or their families knows it’s a confusing patchwork of services that even the best online sleuth cannot easily untangle. The reason is that these services are extremely fragmented and vary considerably depending upon where you live. Also, no one has figured out a one-stop shop that answers all your questions and points you in the right direction.
Once you find the caregiving service you need, you might realize you can’t afford it.
Even worse, once you find the service you need, you might realize you can’t afford it. Long-term care is grossly expensive—ranging from $4,000 to $8,000 in median monthly costs—and most people cannot cover these expenses without spending down their assets to qualify for Medicaid, which has its own flaws. Moreover, more than half of people ages 54 to 72 wrongly believe that Medicare will pay for their long-term care.
“As long as I can afford long-term care, I’ll find a direct care worker to provide it.”
Good luck. Nationwide, home care agencies, residential care communities, and nursing homes are reporting staffing shortages that make it difficult for them to provide care and meet growing demand. (Consumers and their families are likewise struggling with this issue.) Why can’t these employers find and retain workers? Largely because the quality of direct care jobs is terrible, often characterized by poverty-level wages, inadequate training, limited advancement opportunities, and a general lack of respect and recognition for these essential workers. It’s unsurprising then that turnover for these workers ranges from 65% to 99%, and they often leave these roles within the first 90 days.
“Long-term care staff will understand my unique care needs.”
As experts have advocated for years, long-term care should be person-centered, tailored to the unique needs and aspirations of each individual. Sadly, person-centered care still has a long way to go. Additionally, today’s long-term clientele has higher acuity levels, is dealing with more chronic conditions and serious illnesses than ever, and is incredibly diverse, as evidenced by large and growing numbers of people of color, immigrants and LGBTQ+ people—all of whom have unique and additional hardships that require tailored interventions. Unfortunately, our caregiving system lags behind in managing this complex and diverse population of care consumers, which should concern all of us.
From Myths to Reality
I held these misconceptions for years—through my 20s and early 30s, as I watched my parents reach older age and eventually a point where they needed professional support. While my father remained mobile and relatively independent until his death earlier this year, my mother entered a nursing home unexpectedly in 2014 and remained there until her death from COVID-19 and other complications in December 2020. I saw first-hand how she benefited from this level of support, and yet, how her nursing home often fell short in being a true home for her and many others.
‘It shouldn’t be difficult to access care or even to understand it.’
My parents inspired me to join the aging and caregiving fields as a professional in 2010, and I have been driven since that point to fully understand its difficult questions. Why is our care system so confusing, and why is quality care often limited when the need for it is universal? Why do so many people fall through the cracks of long-term care, and why are they disproportionately the people who have long been marginalized? While my understanding of this sector has grown substantially over time, I continue to ask these and other questions, helping care professionals and the people I love make sense of our care system.
These are the reasons I created "A Question of Care," a new podcast that seeks to answer the overarching question: what has happened to our country’s caregiving system? For the first 10-episode season, which focuses on older adults, I spoke in-depth with some of the country’s top experts in aging and caregiving, asking them a range of questions to identify solutions for repairing the long-term care system. What they revealed has markedly altered my way of thinking—and I hope it will change the minds of the podcast’s listeners.
It shouldn’t be difficult to access care or even to understand it. Instead, we should unpack the misconceptions we’ve held for years to make better choices for ourselves and to advocate for systemic solutions—lessons I’ve learned the hard way. Ultimately, we must reshape the narrative on care and, in doing so, create a world in which we all live safely and with dignity.
Listen to "A Question of Care" wherever you get your podcasts or at https://www.aquestionofcare.us/.
Robert Espinoza is the executive vice president of Policy at PHI, where he directs a national policy advocacy and public education program focused on the direct care workforce, and a nonresident senior fellow with Brookings Institution. He also serves on the board of directors for the American Society on Aging (where he is the chair elect), the National Academy of Social Insurance, and the FrameWorks Institute—and hosts A Question of Care, a new podcast that tackles various urgent caregiving topics through interviews with leading experts.
Photo credit: Shutterstock/Halfpoint