Companioned Isolation: The Untold Story of Caregiving, Housing and Loneliness
Aging in a community with care in mind has both concrete and intangible benefits that will lead to improved health outcomes
By Aisha Adkins February 27, 2024
According to an AARP report from 2020, there are approximately 53 million family caregivers. And 25% of family caregivers belong to the Millennial generation. Additionally, a report cited in Refinery29 shows that 54% of millennials feel lonely.
Family caregivers often report feeling lonely and isolated despite spending significant time with their care partner or recipient, according to the Family Caregiver Alliance.
"The fact is that many people across America are living longer but cannot fiscally or mentally afford the cost of living alone." | Credit: Getty
Unlike the baby boomer generation and Gen-X, a report by ABC News indicated that "experts say first-time millennial prospective homebuyers are facing a major crisis stirred by a perfect storm of rising housing prices, interest rates and tougher competition from several generations of buyers." At the same time, aging adults are also being impacted by the housing crisis.
Loneliness is a common through-line in my lived experience and many of my interactions.
Imagine, then, a millennial caregiver seeking community while worried about how they will afford rent or if they will be able to achieve the "American dream" of home ownership while also providing much-needed care for an aging or disabled family member.
What are their options? How can they find belonging among the isolation of caregiving and the precarity of housing insecurity? While it may seem like millennial family caregivers are doomed to face isolation and lack of community, many developments seek to address these societal issues. These advancements give older adults, and their caregivers, hope for a new future.
Full Disclosure: Close to Home
I am a millennial and have been a caregiver for over a decade. I cared for my mother from her frontotemporal degeneration (FTD) diagnosis in 2013 until her passing in July 2023. Frontotemporal degeneration is the leading form of dementia for people under the age of 60.
I also care for my father, who is a stroke and prostate cancer survivor and lives with vascular dementia and stage-3 chronic kidney disease. When not caring for my parents, I am the manager of training at Caring Across Generations, where I train family caregivers, older adults and disabled people on public advocacy and storytelling tactics.
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Loneliness is a common through-line in my lived experience and many of my interactions. Despite the availability of virtual spaces and the often persistent presence of at least one other person in their home, many family caregivers feel something I have termed isolation. The term reflects that although many caregivers have a constant companion, they also experience a profound loss of connection.
Lonely, Not Alone
Avis Hitchcock, a 30-year-old from Florida, has cared for their parents for six years. Both of their parents have battled two types of cancer, from which both are currently in remission. However, due to the deteriorating effects of the disease, chemotherapy and radiation treatments, caregiving remains a necessity.
"I think for me, the biggest thing is the advocacy piece… because questions get asked and they aren't in the space to talk about it or retain information."
Hitchcock uses they/them pronouns and describes their life as "beautiful and wild." Their daily tasks include "taking to and from appointments, advocating, especially when they're in the hospital." They spend a lot of time in the hospital to ensure things are getting done and receiving support and care.
"I think for me, the biggest thing is the advocacy piece… because questions get asked and they aren't in the space to talk about it or retain information," says Hitchcock.
Hitchcock also discussed helping with showers, changing urostomy bags, and other activities most often associated with medical professionals. When asked about how they experience loneliness, they explain, "There's a sense when I'm sitting with them in a room doing these things, I'm with them, and they're with me, but there's this deep sense of… the reality that I can only imagine they feel lonely on their end because they are going through it and I have no idea what that's like."
"Moreover, they have no idea what I'm going through. We're working with each other as best as possible, but there's a divide in it. I'm having to do things for them… there's a big surrender of having to rely on someone," Hitchcock says.
"There should be things out there to support people so it's not like this for caregivers in the future."
"The loneliness is very much the reality in that I'm alone when I'm not physically alone. I thought my life would be is different from where it is. There is a deep, consistent sacrifice that has to be made on a daily basis," Hitchcock notes. "It's almost like I'm living a life that is worthy and beautiful, but why do we have to live this intensity? There should be things out there to support people so it's not like this for caregivers in the future. I don't feel like it's sustainable in a mental or physical health way."
Hitchcock's family owns their own home, and neighbors occasionally assist with grocery shopping and taking out the trash. Friends call and text until they answer to ensure they and their parents are doing okay. However, despite these acts of kindness, the reality remains that there is a lack of community.
Hitchcock explains: "My parents [are not] being open to getting help and support outside of me, which is a little bit of a struggle [when] people ask 'what can we do to support you?' But I don't get it in the main ways I could use support. It's hard when I care for people who don't like getting outside support."
Why Is Loneliness So Significant?
In 2023, the World Health Organization (WHO) declared loneliness an epidemic. When prolonged, loneliness can be as dangerous as smoking two packs of cigarettes per day, according to the Centers for Disease Control and Prevention (CDC). Lonely people have poorer health outcomes than those with robust social lives.
Avis Hitchcock notes that they have lost many relationships throughout their caregiving journey. "It's been tough, the reality of friendships ending because my life has changed, or the reality that I have to push myself out the door to have some semblance of my own life so I don't feel even more lonely."
She says that most of her family is in Mexico, where intergenerational households are much more common. "It is normal. It is not a strange thing."
Ariana Tellez, 30, of Saint Paul, Minnesota, is a mother, spouse and former caregiver to her mother, who died from metastatic breast cancer in 2020 at the age of 67. She notes the critical role multigenerational housing played in getting her through the pandemic.
"We all had each other in our home… it was all of us and our pets. My mom was a fan of multigenerational housing, but it just made sense for us to all live together," Tellez says.
She says that most of her family is in Mexico, where intergenerational households are much more common. "It is normal. It is not a strange thing. [In the United States] I feel like you hear someone [say] 'I live with my parents, and I am 30,' and people are like 'Oh, that is weird,'" but it is not, at least culturally speaking, in Mexico where my family lives."
However, not everyone has a family they can live with during crises or situations of need. According to a 2023 article by The Hill, nearly 15% of the U.S. population lives alone. However, living with a parent, partner, grandparent, child or other family member is not an automatic solution to curbing feelings of loneliness. Future trends are on the rise toward an intentional community where residents can depend on and build relationships with one another.
Where Does Housing Fit In?
An additional stressor to the loneliness epidemic is the current housing crisis sweeping the United States as rent and mortgage prices continually rise, gentrification increases, and predatory practices undermine communities of color – disproportionately impacting older adults and their caregivers.
People facing the trifecta of a housing crisis, caregiving and feelings of isolation may be unsure about their future.
The fact is that many people across America are living longer but cannot fiscally or mentally afford the cost of living alone. While families with care partners are familiar with this truth, many observed for the first time, throughout the COVID-19 pandemic, that perpetual independence is unsustainable. The evidence is clear that we must rely instead on interdependence for overall health and well-being.
For centuries, many cultures worldwide have practiced interdependence through co-housing and communal living models. However, the stronghold of capitalism in Western culture means that we define success as freeing ourselves from our nuclear family structures and pursuing ultimate independence in home ownership.
However, a slow resurgence of coliving models is occurring across the U.S. to address the rising need for care, unaffordable housing costs, and loneliness across generations. In their 2023 book "Design & Solidarity," architect Rafi Segal and artist Marisa Morán Jahn explore how housing and intentional, accessible design can be used in part to make space for the advancement of communal living in the United States.
The Baltimore, Maryland-based Carehaus project founders Segal, of Boston, and Jahn, based in New York City, along with Ernst Valery in Baltimore, help redefine what home means and who has access to it. Carehaus, set to break ground in 2024, is designed to provide housing for low-income older adults and disabled people, their care partners and their families. The development responds to the lack of housing and care for older adults, answering the question: "What if we build in celebration of care?"
Carehaus is the first care-based co-housing project in the United States. In addition to providing practical living space, the innovative coliving community relieves a multitude of burdens with "shared meals, child care and various other activities such as art, fitness, physical therapy, financial literacy courses and horticulture" and culturally relevant art programs, as well as utilities, tools and other resources.
A slow resurgence of coliving models is occurring across the U.S. to address the rising need for care, unaffordable housing costs, and loneliness across generations.
The result is cost savings that create "higher-quality care for residents and sustainable wages for caregivers," according to Segal and Jahn. With shared resources and the caregiving community at the forefront of its design, Carehaus is set to disrupt how aging, disability, care and family are viewed in this country.
Other intergenerational developments, like Bridge Meadows in Beaverton, Oregon, also seek to create interdependence within its model, which brings together youth in foster care with aging and disabled adults.
Another example of interdependence and care is the brainchild of author, speaker and aging advocate Elizabeth White, a past Next Avenue Influencer in Aging. NUUage Coliving is a new, more affordable take on the old active adult community model.
The future mixed-income property for older adults without family is based on the concept "...that sharing resources and aging in a community that balances privacy and social interaction will help older adults without traditional family support systems reduce their housing costs, maintain their independence, and preserve their physical well-being and cognitive health."
White, the project's founder, aims to create space for the feeling of independence alongside the opportunity for community care. With the shared communal space, utilities and other cost-saving features, NUUage is yet another example of a return of Western culture to communal living to make a dent in the mounting housing crisis and the isolation of older adults.
Better Together
People facing the trifecta of a housing crisis, caregiving, and feelings of isolation may be unsure about their future. Retirement planning may now include the globally-common models of coliving as viable options for millions of people living in the United States.
Aging in a community with care in mind has both concrete and intangible benefits that will lead to improved health outcomes. If independence is the ultimate goal, may all roads lead through interdependence. It may take a few more generations to weave caregiving and intergenerational co-living into the daily lives of aging people and their family caregivers.
However, it may be just the solution to end the crises of unattainable housing, indescribable loneliness and challenging caregiving, replacing them with stable homing, tangible belonging and easeful caring.