Findings: How People Think about Long-term Care

Of the 121 individuals surveyed, more than three-quarters said that they were over age 40, and more than half (60 percent) reported that they were building assets for retirement:

• Over 50 percent reported having retirement accounts such as 401ks, IRAs and others
• Over 50 percent reported having personal savings
• 37 percent said they had a pension
• 30 percent said they owned their home

However, more than half (58 percent) said they have not begun planning for future long-term care needs, while only a third (33 percent) said that they had begun planning, and another 9 percent were not sure. When asked if they owned long-term care insurance through their employer or with a private insurance company, 43 percent said no and 20 percent said that they were not sure. Thirty-seven percent said that they owned a long-term care plan but these answers may have been inaccurate. While employers across the country are increasingly offering the option to purchase long-term care insurance through a group plan, the national rate of long-term care insurance ownership is at roughly three percent, indicating that most employees do not pay into long-term care plans offered by employers. We wonder whether some individuals who answered that they own long-term insurance plans thought that they had plans when in fact they did not. We also wonder how common it is for individuals to mistakenly think that they will have access to long-term services and supports when they need them.

“Many people who haven't already gone through the process [don’t make] long-term care top of mind,” said the legislative and campaigns director for SEIU 775. “They're thinking about paying bills now and getting their kid into childcare, whatnot.”

Indeed, life’s circumstances—credit card bills and other expenses—preceded any planning for the future among potential beneficiaries. “It’s pointless to save money when you have high-interest loans,” said a female interviewee, 36, who worked as an independent contractor for a dog-walking and pet-sitting service business in Seattle.

Research has shown that most people will require long-term care at some point in their lifetime, and those numbers are growing. But few have the financial means to plan for their future care needs—most of all, the ability to even focus on affording a long-term care plan. The Washington Cares Fund was designed to benefit all working people in the state, alleviating the strain of the high cost tagged to long-term care insurance and the limited coverage for services.

In our survey, the income brackets broke down as the following:

• Below $45,000
• $45,000–$75,000
• $75,000–$100,000
• Above $100,000

Nearly half of those surveyed (43.2 percent) stated that they earned below $45,000 a year. These are the individuals for whom the Washington Cares Fund would benefit the most—workers who do not earn enough to save for the costs of long-term care.

In our survey, women between ages 20 and 77 accounted for more than half of our respondents (67 in total) in the lower income tier. Many had experience in caring for a loved one with long-term care needs, and a select few had started planning for their future care. This correlates with a recent report highlighting that women in the nation.

“Money is hard to come by sometimes,” said a female interviewee, 41, who works in janitorial services in Spokane. She serves as the sole caregiver for her mother, while managing her own health issues, including bouts of anxiety that have forced her to take short-term disability. “By the time I'm ready to retire, it still won’t be enough, but what can I say—it is what it is.”

In her union job, she felt stable and valued with her employer-based 401k and other benefits; she also relies on her employer’s online benefits service for information and resources available to her. Friends from church also are a resource for her to turn to in times of need, she said. When asked how she would utilize a $36,500 benefit, she listed having food delivered and house cleaning. In short, “it could help me not starve; and if something went wrong, I wouldn’t immediately end up homeless.”

She is not alone among our interviewees, many of whom felt overwhelmed by life’s circumstances—combined with, most of all, thinking about their health in coming years.

“It's the planning ahead for an uncertain future. I can look at the calendar, and yes, I will get older and I will get more infirmed, and I will have to plan around that,” said a male interviewee, 58, who is a front-desk security guard in Seattle and deals with a chronic health issue. “But day to day, I do my best to avoid that thought. It’s overwhelming.”

When asked what he would do with his $36,500, he said he would pay his wife a stipend to provide in-home care, as well as find a professional caregiver who would help with house cleaning and other chores.

“What is long-term care? Is it for a hospice, or a retirement home? What is the difference between short-term and long-term care?,” asked a male interviewee, 54, who was a software trainer in Spokane.

Several years prior, he had to stop working in order to care for his mother during her final months. He was among the more than 60 percent of our survey respondents who said they had experience helping a friend or family member with long-term care. His questions highlight that even those who experience being a family caregiver, still do not know what services fall within long-term care as defined by the Washington Cares Fund.

Our interviews with survey respondents revealed there was no common understanding of what long-term care meant. Each of our interviewees experiences with long-term care were diverse. When we asked our interviewees how they viewed long-term care, they often shared their own personal experiences of caring for someone, or of being cared for by someone.

For instance, some talked about providing in-home care for parents with dementia, while others have helped family members choose and move into a senior living residence. Some served as their loved one’s prominent advocate, ensuring that service providers were delivering on contracted services and properly billing the family for those services. There were individuals who were hit with a life-changing event—an injury or illness—that has left them relying on their family or spouse for care. And while they’re working, some had chronic health issues that meant they needed support in terms of minor medical care.

Each of these varied experiences, in short, have informed their views on what long-term care is and what it will mean for them in the future.

During the course of this research, our interviewees used the terms long-term care as well as long-term supports and services. Long-term supports and services seemed to be the preferred choice among our interviewees when referring to in-home care provided by a trained professional.

Stakeholders stated that depending on the audience, one term might be preferred over another. Our team wanted to understand how potential beneficiaries would react to these different terms, and whether there might be useful insights. Will potential beneficiaries be more likely to hire union members for one versus the other?

Below is a snippet of what our interviewees and stakeholders had to say:

• “‘[Care]’ almost has a little bit of a . . . slightly patronizing connotation to me . . . [but] ‘care’ is more humanizing than . . . services and supports.” – A female interviewee in Seattle, 30, who recently began relying on her family to help her with daily living after contracting COVID.
• “Long-term services and supports feels more accurate [when talking about home and community-based services]. There’s less of a connotation of a group home setting. It also seems broader, and that there’s a range of things you may need and not all are nursing home needs.”- A Seattle-based independent contractor, 36, who watched her mother care for her grandmother.
• “Long-term care sounds caring. I would say while I care about feeling loved, I want someone who knows how to do the work. Long-term services and supports sounds safer.”- A Seattle-based bookkeeper, 68, who cared for her mother living with dementia.
• “Care seems like a full-time job, but the term services and supports sounds like a one-time thing.”- A Spokane-based freelancer, 45, who recently took care of an uncle.
• “For me, I guess, they’re not different. We’re used to hearing long-term care. I don't have a negative connotation about it.”- A Kent-based manufacturing analyst, 37, who is part of a large and tight-knit family.
• “When you say long-term services and support you feel a sense of relief. Like ‘oh, you know, I'm gonna have some support here!’ And long-term care sounds like Medicaid . . . like, ‘okay, I'm going to have to jump through these hoops.’”- A government employee of a federally recognized tribe expressing her own view.
• “[My community] would take support and relief. ‘Services and support’ language is important in these communities.” – An Adna-based administrator, 42, who added that her rural, faith-based community viewed ‘care’ as more personal.
• “Many Asian communities come from third-world countries that don’t have the same resources as the U.S. [They] typically don’t have paid caregivers – family takes care of [you]. When we get older, there’s that unwritten rule that as a child, you were taken care of by your parents and your grandparents; [and] when you're old enough, you return that caring to your elders. So when they come here, the reaction is: ‘I can get paid to take care of my grandma?’ It’s a new concept to grasp.” – A representative from a community-based organization serving older adults in the Asian, Asian-American and Pacific Islander community.

Most of our interviewees stated they would turn to family for care, especially when it came to what they deemed to be simple tasks. That included delivering food or taking them to the doctor. For some, it was ingrained within the traditions of family or community—family takes care of family and the community comes together to support one another in times of need. “I don't feel like taking care of family is work,” said a female interviewee, 41, who is the main caregiver for her mother in Spokane.

Another interviewee echoed that point and shared the following: “I imagined my long-term care is me staying in this house; and you make changes to the physical structure of your house to be able to be mobile. You have family come check on you. If it gets really bad, you have family stay with you. That's our history. That's our tradition, “ said a female interviewee who lived in the small, rural town Adna, Washington.

However when the team delved further, many interviewees likely were convinced otherwise—having a professional caregiver or at least professional caregiving training may be essential at times. For instance, the so-called small task of taking a loved one to the doctor may require professional support if that loved one has mobility issues and needs to be lifted in and out of the car. If the loved one has a specific disability, there are professional skills that would be required.

It is possible that communities rely on informal caregiving to do so, at least in part, because it is what they know and they have less access to information about finding a professional caregiver. The same interviewee who said that caregiving was her community’s tradition followed up with our research team to share that our conversation possibly shifted her perspective. She was alerted by another community member about someone in critical need of care. In her email, she contended that she would still help informally, such as preparing some meals for that person; but “I will [also] refer them to public resources that I know are available.”