Here are four key takeaways from a KET Forum that examined the challenges and rewards of caring for aging loved ones. Hosted by Dr. Wayne Tuckson from KET’s Kentucky Health, the program featured experts in the field including geriatric physicians, occupational therapists, health care administrators, and advocates.
1) The population in Kentucky and America is aging and this will require a paradigm shift in how caregiving is valued in society. That should not be seen as an obstacle to progress, but rather as an opportunity to re-envision how we relate to growing old.
The Centers for Disease Control and Prevention estimated the U.S. life expectancy at 77.5 years in their latest available data from 2022. That same report projects that by 2030, roughly 20 percent of Americans will be age 65 or older. The Pew Research Center estimates that by the year 2050, Americans age 65 and older will outnumber those younger than 18.
In Kentucky, over 1 million people are age 60 and older, says Victoria Eldridge, commissioner of the Department for Aging and Independent Living at the Kentucky Cabinet for Health and Family Services. She notes that the largest growth in this 60-plus cohort is occurring in the western region of the state, particularly in rural areas.
Kelly Parsons, a social worker at the University of Kentucky’s Sanders-Brown Center on Aging, says this increase in older Kentuckians stems from the “baby boom” that occurred in the 15 or so years after World War II, when Americans started families amidst the post-war economic prosperity.
Now these individuals born during the 1940s and 1950s are reaching retirement age, and many of them are – or will be – in need of assistance. Former First Lady Rosalynn Carter, who died last November, was a leading national advocate for caregivers, and many obituaries included her quote:
“There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
According to Charles Williams, executive council member with Kentucky AARP, over 600,000 Kentuckians already serve as caregivers to loved ones, either part-time or full-time. “This is an all-encompassing problem that we have to get on top of right away,” he says. “The AARP’s mission is to make sure that people get to live where they want as they age.”
“We should celebrate older adults, they’re not a drain on society,” says Dr. Christian Furman, medical director of the University of Louisville’s Trager Institute Optimal Aging Clinic and professor of geriatric and palliative medicine. “I take care of a lot of older people, and they’re doing amazing things – they’re climbing mountains, they’re working, they’re contributing to society. So I just think we have to change our mindset.”
2) Caregiving amounts to a full-time, unpaid job that evolves over time as the loved one ages. The responsibilities are centered around ensuring the best quality of life possible for the person receiving care.
The “aging at home” concept is central to the modern caregiving paradigm. Most individuals want to live independently for as long as possible and avoid having to move to an assisted living facility or a nursing home. But safety benchmarks must be met for aging in place to be successful.
“We want to make sure that this person-to-environment fit is continual,” says licensed occupational therapist Elizabeth Rhodus, an assistant professor with the Sanders-Brown Center on Aging and the Department of Behavior Science at the University of Kentucky’s College of Medicine. Occupational therapists can instruct caregivers on physical activities to maintain mobility and advise on helpful adaptations in the home – such as a walk-in tub or ramp to the front door.
“As a person, my ability to think, move, and function (needs to match) what’s available in my environment,” Rhodus explains. “What is it about my environment that needs to be changed so that I can successfully, and as independently as possible, engage in activity or how I occupy my time in a functional way?”
Caregivers must also learn about geriatric medicine and whatever particular condition their loved one has, be it declining physical mobility or dementia.
“The caregiver is part of the health care team, and we can train the caregiver in what we’re looking for,” Dr. Furman with the Trager Institute says. Furman and her staff instruct caregivers on what she calls the four Ms of geriatric care: what Matters most as the goal of care; what Medications to take and to avoid; how to preserve Mobility; and Meditation, or taking time to alleviate stress and anxiety.
Samantha Cotton is an assistant professor and director of the Alzheimer’s Disease and Related Dementia Program at the University of Louisville’s Trager Institute Optimal Aging Clinic. She recalls visiting a patient who was taking 27 medications daily. Even though she is not a geriatrician, Cotton says she was still able to counsel the patient on how to seek medical advice and reduce her medication. These are the responsibilities caregivers are tasked with every day.
Amy Goyer is a national caregiving expert, author, and consultant. In an interview with Renee Shaw, Goyer says that caregiving is truly multi-generational, including those from Gen Z (born during the mid-1990s or later) as well as many persons from the Greatest Generation that are well in their 80s and are still caring for a spouse or relative. About 60 percent of caregivers are women, she adds, and 60 percent of caregivers are working either full- or part-time jobs in addition to providing unpaid care.
“The main thing we need to think about is that family caregivers are providing so much care,” she says. “They are the backbone of the long-term care system in this country, and the value of that is about $600 billion. In the state of Kentucky alone, the value of the care that 610,000 family caregivers provide is about 570 million hours of care, and the economic value of that is $8.6 billion.”
Goyer says that only about 3 to 4 percent of people receive long-term care in an assisted living facility or nursing home. The costs of residing in these facilities are prohibitive for many families, she says, ranging in national averages from $19,000 per year to go to an adult day care facility five days a week to $108,000 per year to reserve a single-occupant room in a nursing home.
If they have not planned ahead, seniors may have to deplete their retirement savings and assets to pay for care. With that in mind, Goyer advises caregivers to examine all options for in-home assistance first if they feel overwhelmed with their duties.
3) Those who care for a loved one should not neglect their own wellbeing. Taking regularly scheduled breaks is a must, and knowing when to reach out for emotional support is important.
Many caregivers in Kentucky are either children of aging parents or caregiving spouses who themselves may have their own medical needs, says Rhodus. In some cases, the extended family will step in and help the primary caregiver, she notes, and this is especially true in rural areas such as eastern Kentucky.
“When you do have one person that’s providing care all the time, that person can experience a lot of fatigue, burden, and stress,” Rhodus says. “When we have a ‘care convoy,’ that’s what we call it sometimes, a whole convoy of people are there to support you, that will take rotations. It can be the neighbor, it can be the cousin, it can be the aunt, the sister, whoever is available.”
Even with support from relatives, friends, and government resources, caregiving can be an isolating experience. Many caregivers are reluctant to reach out for assistance and/or take a break, due to feelings of guilt or shame about their situation.
“We need to change the discourse or the conversation around this to make caregivers more aware that taking respite, taking time for yourself, that’s all a part of self-care,” says Cotton.
The health effects can be so taxing that, as Kelly Parsons explains, many caregivers will die before the persons they are caring for does. Stress accumulates quickly, and caregivers often avoid attending to their own health as they focus on their daily responsibilities. They may skip their own medical appointments or fail to refill their own medications, for example.
“Sometimes we see this, that the caregiver dies before the patient, and that’s not the way it is supposed to be,” Dr. Furman says. “But they’re just so stressed, and there’s a lot of research that the stress response, as an immune response, is not healthy.”
Family members who assume responsibility of caring for a relative with whom they previously had a strained relationship face an even tougher challenge, Cotton says, and they may therefore need more support. “Helping individuals understand that you’re not always going to be able to undo 20, 30, 40 years of a problematic or challenging relationship just because you’re that person’s caregiver. That’s where things like mental health and behavioral health come into play,” she says.
4) More support services for caregivers in Kentucky are needed, but the state is making progress to connect caregivers to resources thanks to the efforts of government, nonprofit groups and advocates, and the medical community.
Victoria Eldridge says when she became commissioner, Kentucky ranked 49th in the AARP’s Long-Term Services and Supports list of states. Now, it has moved up to 42nd. She notes that Kentucky’s 15 Aging and Disability Resource Centers around the state help caregivers provide in-home services and screen them to determine whether they qualify for Medicaid.
In addition, her department has hired its first coordinator to focus solely on assisting military veterans and their caregivers. CHFS provides respite services for around 5,000 caregivers in the commonwealth, which Eldridge says gives them “a chance to step back and take care of themselves.”
Charles Williams says AARP is committed to educating the public about the importance of using support services for caregiving. As part of its outreach, AARP has partnered with United Way Worldwide to introduce a 211 hotline that persons can call to access caregiving resources in their area. In addition, AARP produces a Family Caregiving Guide, which lists steps caregivers should take to lessen the financial and emotional burdens on themselves and their families.
More broadly, the National Family Caregiver Support Program provided through the federal Administration for Community Living offers financial support to persons caring for individuals age 60 or over or for those with dementia at any age (as well as for persons caring for those with disabilities and non-parents caring for children full-time).
“This gives you about $2,000 for respite care, a caregiver break, so you can hire somebody in the home, and about $300 to $400 for supplies,” Kelly Parsons says. “The biggest thing about this is it’s not asset-based. Nobody’s going to look at your bank account, nobody’s going to look at your records.”
On a more personal level, Amy Goyer stresses that caregivers must seek out self-care support services to alleviate stress and learn new approaches. She says the Facebook discussion group she moderates for AARP that has over 18,000 members is a valuable option.
“Many caregivers are just so isolated that they don’t have that social support, so you can at least find that in an online group, and that’s definitely better than nothing – although there’s no thing that can replace a hug,” she says.
