Aging in America: Need for Caregivers Grows as Population Ages
By Leigh Glenn
When Mandy Weirich’s father became ill, he ended up in a nursing home — where he was neglected. Fortunately, another bed in another nursing home was secured, but it was three hours from Weirich. This reduced her weekly visits to monthly and caused those visits to take an entire day.
Weirich, a licensed social worker with an MSW, coordinates the MSW online program at West Virginia University and is a clinical instructor. She already was caring for her mother and two teens at home, and there was no way for her father to move in with them and get the kind of care he requires, she said.
Despite her experience as a social worker with adult protective services and all of her knowledge of the system — Medicaid, nursing homes, and the ins and outs surrounding aging — when an error happened with Medicaid and disqualified her father from coverage of nursing home services, she said she “just sat here and cried. The emotional toll is incredible.”
As the U.S. population ages, the need for family caregiving — as well as social workers to help care recipients, caregivers and their families navigate the system and find support — also will continue to rise.
The joint AARP Public Policy Institute/National Alliance for Caregiving report, "Caregiving in the U.S., 2015," estimated that 34.2 million Americans had provided unpaid care to an adult, 50 years or older, in the 12 months prior to being surveyed. Sixty percent were women and those involved in higher-hour caregiving were usually spouses taking care of spouses.
One glaring problem, whether care recipients live in rural areas, suburbs or cities, is the potential for deepening social isolation that can come with age — even though isolation can be present at any age. Job loss, age-related injuries and chronic illness or degeneration can all play roles in isolating older adults who then need care. But the same dynamics also can affect family members, whose caregiving work has an opportunity cost of $522 billion annually, according to a 2014 report from RAND Corp., based on time-use surveys of Americans in 2011 and 2012. The figure represents estimated income losses.
“It is hard work and frequently unpaid,” says Sherry Saturno, LCSW, LNHA, DCSW, executive director at Gramatan Village in Bronxville, N.Y. “It can often be lonely and isolating. Caregivers are at risk for developing depression and may feel guilty, despite their best efforts to care for a loved one. They may feel angry, frustrated and burnt out. Loved ones with dementia may no longer recognize their caregivers or be able to communicate verbally with them.”
A son, daughter or other relative may not live in the geographically boundaried Naturally Occurring Retirement Community, or NORC, where the care recipient lives. But if that community has elected to provide services, such as assessing the home and wellness of the person in need, it may also assist caregivers by educating them as to what resources are available.
An antidote to social isolation would be more integrated, demographically mixed communities. NORCs are one model of these communities where a higher percentage of older adults or retirees lives. NORCs can formally become part of the Village Movement, which allows them to register as nonprofit membership organizations that help to direct services, such as transportation, home repairs and modifications that improve safety.
Gramatan is one such community. Saturno facilitates support groups and supportive counseling. And Gramatan serves as a field placement for graduate and undergraduate social work interns, who co-facilitate groups and activities, take part in face-to-face meetings with members, and accompany them on social and cultural outings.
“At Gramatan Village, we meet with members, families and caregivers to review each individual’s unique needs,” Saturno said. “This includes an overview of psychosocial needs, community-based supports, activities of daily living, social and cultural preferences, transportation issues and caregiving needs.”
Among Gramatan’s programs, the Well-Spouse group provides support and education for spouses or partners of loved ones who have dementia or a serious illness. Gramatan also is part of the daughterhood.org program and runs a Daughterhood Circle for small groups of women with aging parents who meet regularly to help one another.
“Women especially find themselves in caregiving roles while simultaneously balancing careers, relationships and children,” Saturno said. “In this type of supportive and nonjudgmental environment, women are free to express stress and frustration, explore feelings of guilt and isolation, and laugh and/or cry with other women who understand what they are going through.”
From there, the women often develop friendships and express their gratitude for having someone who understands and the knowledge they are not alone, she added.
Pamela Braun, MSW, LCSW, C-ASWCM, LF, has spent her entire career in the field of aging, working first in medical psychology at Mayo Clinic in Minnesota before moving to Phoenix and starting Geriatric Assessment, Management and Solutions LLC, or GAM. She became interested in gerontology on the advice of an instructor who suggested that was the way things were going. But Braun has always loved working with older adults.
“When you work with children, there is a set of issues but (they’ve had) less time on this Earth,” she says. “And older folks have a lot of time to have family issues — it’s amazing.”
Many of the patients and clients GAM works with come from elsewhere — often to get away from family — and they may not want to return to Wisconsin or Ohio. Seeing a need prompted Braun to develop a business around aging lifecare services. Some older adults are too ill to return home, even if they want to. And others keep coming from places like California to obtain a lower cost of care.
Money often is at the center of family conflict. A lot of older adults worry about the quality of care they might receive if their adult children turn to the cheapest place — so much so that Braun has helped many appoint independent professionals to hold a health care power of attorney.
Like Saturno, Braun says we are not prepared to take care of older adults. “I don’t think that people in general realize the amount of work in terms of energy and care that the aging population requires. If you’re a caregiver for someone, there’s an emotional toll as well, besides financial, physical — if they’re having to lift someone.”
Although care plans for family caregivers do not exist in some settings, plans for care recipients should consider the needs of caregivers.
“Not following these interventions for having boundaries, outside interests, taking care of their own needs lead to high levels of burnout, hospitalizations and, in some cases, death,” Braun said. “I have seen caregivers present in the ER with their spouse saying that they have been putting off their own cardiac surgery due to their caregiving role. The caregivers are putting their own health at risk and may die prematurely — and the care recipient still needs to then be placed.”
Weirich knows from her own experience how hard it can be to make time for eating well and exercising. Often, she says, surviving caregivers undergo a severe decline after the care recipient dies. This happened with Weirich’s own mother, who had encouraged Weirich to work with adult protective services. After Weirich’s maternal grandmother died, her mom became ill and did not get to do the things she had planned.
Lack of self-care also may lead caregivers to neglect care recipients. Weirich has seen this in her work with APS, which she describes not so much as “being the heavy,” but getting involved to educate and provide resources. It’s about both care recipients and caregivers knowing when they can’t do anything anymore and planning for that.
“Respecting their right to self-determination is good, but at what point do you know by not pushing for more care are they being neglected? … It’s unfair to think you won’t go into a nursing home,” she says. People should be touring them and seeking them out to get an idea of what they want for themselves and for their loved ones.
The planning also includes having advance directives in place, understanding medical and financial powers of attorney, and when the care recipient may need a conservatorship or guardianship, Weirich adds.
Braun, too, encourages caregivers of her clients to take care of themselves. A caregiver plan might include focusing “on their own physical, mental and spiritual health by creating long-term and short-term goals and interventions,” and include maintaining relationships and activities that “fill their cups back up,” she says.
Caregiving also comes with rewards, including “valuing every day as a gift with someone,” says Saturno.
Yet a world of difference exists between caring for a child versus an adult. “Usually, you take care of someone sick to get them better,” Weirich said. But as her boss says, caring for older adults is a “long, strenuous road that only ends in heartbreak. The only relief is the parent’s dying — not getting better or going back to the days when they’re able-bodied.”
Even if caregivers know this, they may not have come to grips with it emotionally.Social workers may help them do so by emphasizing self-care and support.
Caregivers often may feel wracked by guilt. Worse is when others add to that feeling. Training can help social workers keep an open mind, stay objective and not have preconceived notions about the father who lives with alcoholism or the mother who has bipolar disorder.
When the crisis with her father came out of nowhere, Weirich’s son was graduating, she had just changed jobs, and also was working to help her mother. She had missed a lot of work, something common among caregivers. One social worker berated Weirich on the phone for not stepping up to help her father, with whom she has a strained relationship.
Weirich recalls telling the social worker, “‘I will do what I need to do to take care of him, but asking me to go in and be an actual caregiver for him is not going to happen.’ You can’t judge what people are going through. If they don’t want to care for somebody, that’s up to them. They have to do what’s best for them and if they say they can’t, we shouldn’t expect them to.”
Weirich worked with a family whose terminally ill mother had a feeding tube, and the question arose of whether to remove the tube. The husband had dementia and had been abusive, and should not have been making decisions, Weirich says. But none of the adult children, in their 30s and 40s, wanted to step in. They “still feared Dad that much. You just never know what kind of trauma has been there and that should be respected.”
GAM develops plans of care for clients and their families and also holds accountable the people providing the care, including professional caregivers. Not everybody can do the kind of work that GAM provides, because it means being creative and thinking outside the box when it comes to planning and interventions.
It also means keeping informed about what kinds of services exist that anyone may take advantage of but families may not know about.
Robust programs that boost quality of life assess and help improve mental health. Sun City, which was the first 55-plus community in the U.S, offers a variety of activities and clubs. But even so, as people age, their worlds begin to shrink, Braun says, as family and friends die and they are less mobile. The need for community grows more important with age, especially when family caregivers are far away.
Despite these challenges, later life can be a time for continued growth and intergenerational enrichment. In fact, people like Weirich see potential economic opportunities involving an expanding aging population.
Building houses that are accessible for everyone, creating communities that are friendly to older walkers, bikers and parents with strollers. “We’re ripe for that kind of progress,” she says. “We’ve just got to change priorities on a national level.”
Certain programs offer hope. New York, for example, created the Medicaid-based Consumer-Directed Personal Assistance Program, which enables older adults to choose the caregiver they want — including friends and family — as paid caregivers. This “alleviates the stress and anxiety that often accompanies strangers coming into one’s home,” says Saturno, while also helping to offset the cost of care for caregivers.