Nancy Flanary, left, and her sisters, Cindy DeRosa, right, and Peg Klein, not pictured, provided at-home care for their mother. Photograph by Kathleen Gustafson.
For two years, Nancy Flanary rose at 6 a.m. to grind her mother’s vitamins, feed her through a tube, turn her frail body and clean her soiled sheets. Between that work and the regular lifting and transporting of her mother to the doctor, Nancy and her two sisters enabled their mother to live her final years in the comfort and love of family.
“I never got back into the job market,” said Flanary, who lives in Hugo, 20 minutes northeast of the Twin Cities. She is not alone; many caregivers are learning that in choosing to care for their parents, they are making a decision that impacts them long term in a way they’d never imagined.
Disproportionately impacting womenm
While the emotional and physical burdens of taking care of a loved one are well known, the financial cost of informal caregiving is less frequently discussed. Caregivers may feel guilty complaining about what society has said should be a labor of love. The problem is pervasive and disproportionately affects women, creating a public policy challenge. Females generally have less money and live longer and are more likely than men to be the caregiver-and to need one.
“It is definitely challenging for all caregivers but the responsibility falls disproportionately to women,” said Amy Friedrich-Karnik, a spokesperson for Family Caregiver Alliance an organization that addresses the needs of family and friends who provide long-term care at home. “Women tend to suffer financially in their later years because of the financial impact caregiving has had on them.”
One in four U.S. households is involved in caring for a loved one age 50 or older and several million provide care to those under 50 who have developmental disabilities, according to national caregiver groups. These caregivers typically provide about 20 hours of care each week and work full- or part-time.
Between 59 percent and 75 percent of the caregivers are female. While more men are becoming caregivers, women, on average, give 50 percent more time than the average male caregiver, according to the Family Caregiver Alliance.
The tough balancing act between career, finances and female caregiving is especially common in Minnesota, which has the nation’s highest percentage of women in the workforce: 69 percent.
Sixty-four percent of Minnesota caregivers report their employment is affected. Most say they have accepted a lower-paying job with greater flexibility or fewer demands, according to a state survey.
Ellen Edvenson, a teacher in Grand Rapids, wanted to keep working full time when she began caring for her parents in her late 40s. The retirement she had planned with her husband depended on it. But shuttling from home to school to her parents’ house to doctor’s appointments nearly every day forced Edvenson to go to three-quarter time. “Keeping them cared for seven days a week exhausted me at work and at home,” she said. “My reduced energy level affected my teaching performance.”
Nationally, one-third of caregivers who are employed take a leave of absence or give up work temporarily or permanently.
Edvenson lost thousands of dollars in income and retirement savings. She also had new expenses. Because she experienced more upper respiratory infections and sleep problems as well as weight gain, she paid more in medical bills at the same time she was taking home less pay. “It had an immediate effect upon my financial status and will affect my retirement pension down the road,” she said.
Caregiving helps society
If the goal is keeping loved ones out of institutionalized settings, informal caregiving provides a high return on investment, or ROI. Only 7 percent of older adults who have a long-term care need and a family caregiver are in institutional settings, compared to half of those who have no family available, according to the Family Caregiver Alliance.
In real dollars, informal caregiving in Minnesota is worth billions. According to a 2005 report by the Minnesota Department of Human Services, informal caregiving added $4.58 billion to the Minnesota state economy in 2005, according to a report by the Minnesota Department of Human Services. And the numbers are growing: AARP estimated that in 2006, the amount in Minnesota increased to $7.1 billion.
Contributing to that huge cost savings to the state is Sherrill Ross (name changed for privacy reasons), 40, a Maple Grove mother of two. For a year, Ross has kept her mother, who has dementia, out of institutional care by keeping her in the family’s townhome. But because the family has little savings, the extra spending on food, all-day air conditioning and transporting her mother to and from appointments at far-flung locations has been too much.
“Small expenses-going through a six-pack of toilet paper in two days instead of a week, keeping the house cool all the time-add up,” said Ross, who requested her real name not be used because she said she feels bad complaining. “We’ve cut back all around and are just trying to make it to next week. To be honest, we’ve used a food shelf several times.”
Ross has recently experienced more family tension over strained finances-and living space; her mother now occupies Ross’ teenage son’s room, and he sleeps on the couch. She’s considering taking a leave “to get it together” but cannot afford to go without pay.
“It’s hard-out of my 40-hour work week, I spend five hours on the phone arranging appointments and other things for my mom,” Ross said. “It’s very distracting and it’s hard to focus on my job.”
While caregiving often is temporary, the reduced financial security of many women makes even a few months or years of it potentially devastating. A typical situation, Friedrich-Karnik said, is an older woman who exhausted savings to care for her parents and then her husband, leaving her destitute in old age.
“I’ll never regret what we did for my mother,” said Flanary, whose career was derailed and earnings severely affected by her decision to care for her mother. “But I’m glad going into it I didn’t know what it would be like-I probably couldn’t have done it.”
How can government help?
Public policy changes would not only help people like Sherrill Ross, Ellen Edvenson and Nancy Flanary, but would save public funds.
In 2005, 92 percent of caregiving to older Minnesotans was provided by family members or close friends, down from 97 percent in 1988. While the percentage of family and friend-provided care remains high relative to other states, the downward trend means higher costs for the state. Each percentage point drop in family/friend caregiving is an additional $30 million the public sector must bear, according to the 2005 state report.
“One of our goals is to slow the decline in family caregiving by offering more support,” said LaRhae Knatterud, director of aging transformation at the Minnesota Dept. of Human Services. “We’re seeing caregivers reaching out to supplement care with respite care, adult day care and transportation services.”
Reshaping Medicare and Medicaid to provide more of the services and care environments people want-a nurse or social worker on call or “caregiver coaches” early in the process-are some examples.
“Medicare and Medicaid have been oriented around acute care, [not] to address types of services or timing,” said Joseph E. Gaugler, assistant professor in the Center on Aging at the University of Minnesota. Because many people, including physicians, are not aware of the community resources available to caregivers and their families, the use of services often occurs during a crisis, Gaugler said. That costs taxpayers more.
Providing caregiving resources to families through employee assistance programs or other employment benefits and having work cultures that support caregivers through flexible work hours also is part of the solution, experts say. A Met Life study found that caregiving costs businesses more than $33 billion annually in lost productivity.
At a May Congressional hearing on eldercare issues, Sen. Amy Klobuchar (DFL-MN), spotlighted General Mills’ programs that offer discounted long-term care insurance and help employees identify caregiving resources. Klobuchar has proposed a federal caregiver tax credit of $1,200 annually. A similar measure has been introduced in the Minnesota Legislature but nas not passed.
Some state and federal lawmakers have proposed paid family leave for caregivers. Only California has such a measure. One measure that has failed to pass Congress is aimed specifically at women; it would give Social Security credits to people who leave the workforce to care for someone.
Tax solutions can be tricky, say experts; a question to consider is whether someone who gives up a job to care for a parent is more deserving of a tax credit than someone who does not give up their job but still provides care.
“The challenge is figuring out how to offer more home and community services and how to [give] people-especially in the middle and lower income brackets-the financial support to pay for it,” Friedrich-Karnik said.
Long-term care insurance
Will it prevent our children from becoming caregivers?
Though long-term care insurance is often dubbed the cure-all for planning for old age, its benefits are limited, experts agreed. While it’s a good idea to invest in a plan by middle age “if you can afford it,” added Friedrich-Karnik, long-term care insurance does not guarantee the right care at the right time, Gaugler said.
“One needs to really read the policy carefully, because not everything is covered,” Gaugler said. “How much support does the policy provide for assisted living, for example?”
Long-term care insurance is expensive, and policies, which vary greatly, are complex. Premiums are lower if purchased when the policyholder is young; however, that also means a longer time paying premiums (which may increase). An advantage to buying long-term care insurance while you’re relatively young is the greater net value.
The problem still boils down to a system, including long-term care plans, that cover acute care much more than the community-based services that are increasingly in demand, Gaugler and others said.
What to learn more?
The U.S. Department of Human Services’ Administration on Aging has a 12-page booklet, “Financial Steps for Caregivers.” Access it at www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp.
Minnesota Board on Aging,www.mnaging.org, provides general information.
ElderCare Rights Alliance,www.eldercarerights.org, provides home care and assisted living guidance, advocacy coaching and elder abuse/nursing home and family council training and resources.
Family Caregiver Alliance,www.caregiver.org, provides facts, research from a national perspective on caregiver issues, including state-by-state and federal updates on public policy measures. En espanol.
Urban Institute, Richard W. Johnson research on caregiving and older adults, www.urban.org/publications/901078.html, the latest public policy and related research publications on caregiving and related issues by a leading researcher.