At age 60, Jessica Kim’s mom was diagnosed with pancreatic cancer. During the first years of her mother’s illness, Kim’s parents were still living in their own home in New Jersey. During a visit, Kim found fast food wrappers scattered all over the house. She realized they were struggling to care for themselves, and she moved them into her home in Boston.
“I didn’t think twice about it,” says Kim, who is Korean-American. Her husband, also Korean-American, was immediately on board, too. Living in an intergenerational household was simply the norm for her growing up, as her grandmother lived with their family until she passed away when Kim was in third grade.
But the challenges of taking care of a parent with a terminal illness grew heavy, and Kim struggled while juggling three kids and a career. After 6 months, she quit her job to be a full-time caregiver.
Though her mom passed away in hospice in the home 5 years ago, Kim’s father, now 84, currently lives with the family. He tried living on his own again after his wife’s death, but after multiple falls and emergency room visits, Kim moved him back into her family home permanently. She says that providing the support for an older loved one to age in place has been embedded in her family values, as it is for many families from many backgrounds.
“How we love and care for each other and express that is rooted in these cultural norms and expectations,” Kim says. “There is no right or wrong, but it’s critical to understand the way these cultural values shape our choices if we want to better support caregivers.”
Through her grief after her mom’s death, Kim realized that there was a huge gap in what caregiving and aging in place resources were available and how easy it is for people to connect to them, and she co-founded the caregiving platform ianacare. “I really thought I was the only one in this situation, and when you’re thrust into it, you’re only responding and surviving.”
Defining Aging in Place
The definition of aging in place varies widely, but a 2020 article in the journal Innovation in Aging set out to define the term as “one’s journey to maintain independence in one’s place of residence as well as to participate in one’s community.” That will look different for different families. Aging in place can be done in the home that an older adult has lived in for decades, a new home moved into to be closer to family, or in an intergenerational home.
Most older adults – 88% — say they want to age in their homes, according to a University of Michigan National Poll on Healthy Aging. But it’s not that simple, as homes often need to be set up with systems and modifications (such as grip bars in the bathroom, a wheelchair ramp, or technology that detects falls) in place to make that reality safe.
Families face many challenges, especially if they live far from each other. It can be difficult to manage challenging health situations from afar –or even when caring for a loved one in your own home.
“When things are happening in the private home, we think of it as a private matter, and the responsibility falls on individuals and family members to figure it out,” says Jennifer Molinsky, PhD, project director of the Housing an Aging Society Program at the Joint Center for Housing Studies of Harvard University. Her research focuses on the lack of affordable housing options for adults to actualize aging in place. It doesn’t help that the responsibility families face to make this a reality for their loved ones can be complicated – and expensive.
The financial reality of caregiving can be tough. Costs are not only centered around housing or modifying an older adult’s home to fit their physical needs, but most people need long-term support and services (including health care and meals), which may come from community programs or from families themselves.
“We call it the dual burden of housing and care: Can you afford your housing and everything else that you need?” Molinksy says. Multigenerational living can be one solution, and while it can be rewarding, it, too, places certain financial stressors on families.
In 2020, 53 million Americans were providing unpaid care – and nearly half of them cited financial strain due to caregiving, according to The National Alliance for Caregiving (NAC). Six in 10 working caregivers say that their responsibilities at home impacted their careers; half of those who left their job did so to spend more time with their loved one, the NAC notes.
Overall, these caregivers provide the equivalent of $470 billion in unpaid care, reports show. “Caregivers are becoming the invisible backbone of health care. In order for adults to age in place, we need to respect the caregiving role,” says Sarita A. Mohanty, MD, MPH, president and CEO of The SCAN Foundation, a nonprofit focused on transforming care for older adults.
Cultural expectations and a sense of obligation to provide aging in place are driving factors for those who want to make aging in place a reality.
“Though aging is universal, the experiences of aging are different for everyone,” Mohanty says. The experience is often different for people of color, who make up 40% of caregivers and are more likely to have lower socioeconomic status and endure medical racism and lack access to support services, Mental Health America points out. “Fewer Black and Hispanic caregivers think that their local area does a good job of providing access to resources, such as high-quality health care or socialization. There’s this intersection of racial, ethnic, and income status issues we have to take into account when we’re looking at aging in place,” Mohanty says.
What’s more, some families might not find that their options for long-term care are comfortable for their loved one if the facility doesn’t have staff or facilities that share the cultural background of the older adult, and there can be a mismatch from everything from food and music to language, says Allyson Brothers, PhD, associate professor in Colorado State University’s Department of Human Development and Family Studies. Aging in place independently or with a family member, on the other hand, allows people to live in a situation that honors their cultural background.
Starting the Conversation
For families facing these decisions, it’s important to initiate conversations with loved ones so you can get a sense of their desires and expectations.
“Data shows that most people are not making a proactive decision about where to live late in life,” Brothers says. “Many times, it’s a crisis that forces an older adult out of their home, such as a fall and resulting broken bone, that can be difficult on the individual and their family. It can be devastating for a person’s well-being to leave their home and never come back to it.”
Decisions that are made in crisis mode often lead to more regret and family strain.
With families moving further apart and people living longer with more complex health issues, there may also come a point where you realize that you are no longer equipped to support a loved one in aging in place. You’ll need to open up the conversation with your loved one and other family members about next steps.
One of the most important things families can do is to become informed about the resources in their area. It can be a complex puzzle to find all of the supports that are needed for an aging adult, and, unfortunately, the onus falls on individual families to get the puzzle pieces in place. “It can be daunting to know where to start and if a loved one qualifies for certain benefits,” Molinksy says.
If you are currently helping a loved one age in place or you will in the future, here’s where start looking:
- Area Agency on Aging (AAA): Agencies that coordinate programs that help older adults remain in their home through programs, such as MealsonWheels.
- Rural Health Information Hub: Educates on home-based services and community support for rural residents.
- Senior Access Points: Developed by Colorado State University Extension and CSU Department of Human Development and Family Studies and other organizations, this is designed as a resource for their local older adults, but Brothers says that the website garners traffic from people around the U.S. You can use it to find resources for a variety of aging topics, from legal and financial to mental health, no matter where you live.
- American Council on Aging: Provides a resource on how to receive financial compensation through Medicaid as a caregiver.
- National Council on Aging: Find resources for older adults and caregivers to maintain independence and age healthfully and with financial security.
- Family Caregiver Alliance: A nonprofit that focuses on improving the life of caregivers and those they care for.