More than 50 million Americans care for a family member or friend with a chronic illness, disability or advanced age during any given year, according to a 2000 survey by the National Family Caregivers Association. And the number of people who take on this role will likely boom: The proportion of the U.S. population who are adults 65 and older will rise from 12 to 17 percent in the next 20 years, according to the U.S. Census Bureau.
Some caregivers--like Lois Von Halle, who cares for her husband who was diagnosed with multiple sclerosis in 1985--say caregiving can foster a sense of giving back to a loved one, and can lead to a deeper, stronger relationship between caregiver and recipient. However, many psychologists note that it can also have its costs, including increases in stress, anxiety and depression.
Moreover, psychologists like Dolores Gallagher Thompson, PhD, of Stanford University's Older Adult and Family Center, suggest that the emotional and financial drain of caregiving can lead to severe consequences in both the workplace and in the home.
To help caregivers--35 percent of whom are 55 or older--cope with current challenges and to prepare to meet the needs of the influx of nearly 15 million new caregivers expected in the next 20 years, psychologists and other researchers are working to learn more about the tolls and rewards of caregiving. Others are seeking to reduce caregivers' stress and anxiety through programs like adult day care and caregiver family therapy.
Caregiving's hidden costs
The list of tasks caregivers handle for loved ones can seem mind-boggling--managing personal finances, doling out medications, providing transportation, helping them get dressed. As those tasks mount, caregivers can fall prey to bouts of anxiety, depression and other related physical and psychological ailments, according to Gallagher Thompson.
In a 2003 meta-analysis in Psychological Bulletin (Vol. 129, No. 6, pages 946-972), University of Washington psychiatry professor Peter Vitaliano, PhD, and two colleagues found that caring for a family member with dementia is chronically stressful and can have physical health consequences. Caregivers registered 23 percent higher levels of stress hormones than noncaregivers, as well as elevated blood pressure and glucose levels, which can lead to hypertension and diabetes.
And aside from the obvious financial costs of caregiving, which the National Institutes of Health estimates total more than $306 billion annually in the United States, care-giving can also pose social costs, says psychologist Bill Haley, PhD, of the University of South Florida's School of Aging. His 2003 article in Critical Reviews in Oncology/Hematology (Vol. 43, No. 2, pages 151-158) found that more than half of cancer caregivers report that caregiving disrupts their daily routines and reduces their ability to socialize with neighbors, friends and others.
A life-enriching experience
The costs are real, but so are the benefits, according to Nancy Giunta, a doctoral student researcher at the University of California, Berkeley's Center for the Advanced Study of Aging Services. In a 2004 article in the Journal of Human Behavior in the Social Environment (Vol. 9, No. 4, pages 85-109), she found that most family caregivers felt that they were making a significant contribution to their families.
"Caregiving is extremely stressful, but in a way it fosters closeness because at no time in their life have [caregivers and recipients of caregiving] been given that much time to be together and to express their thankfulness and appreciation for each other," she says.
Von Halle agrees. "We're in a very loving relationship," she says of her 40-year marriage to her husband. "We've shared a lot together. Often, we communicate just by looking at each other."
Despite their strong relationship, Von Halle notes that she couldn't have coped with caregiving's significant strain without the help of support groups. Psychologists are also seeking to provide needed support through culturally appropriate interventions--important given that minorities will comprise more than a quarter of the older population by 2030, according to U.S. Census Bureau projections.
For instance, in an upcoming article in the American Journal of Geriatric Psychiatry, Gallagher Thompson analyzed the effectiveness of an in-home behavioral management intervention for Chinese-American women caring for elder relatives with dementia. The six-module intervention focused on teaching caregivers skills to cope with stress. She found that using instructions and manuals written in participants' preferred languages (either Mandarin, Cantonese or English), offering sessions in the home on a one-to-one basis, and avoiding terminology, like "assertiveness" helped participants feel they were fulfilling the Chinese cultural value of "filial piety"--showing love, respect and support for one's parents.
Moreover, participants' depressive and stress-related symptoms improved significantly more than those in a control group that received culturally sensitive telephone support. Another helpful aspect of the intervention may have been its scientifically based education to destigmatize Alzheimer's disease and other forms of dementia, says Gallagher Thompson.
"Various ethnic groups think of Alzheimer's disease as 'crazy,' and they try to hide it because it's shameful for themselves and their families," she says. "But if we can do some educational outreach, over time it will make an impact."
While alleviating shame and stigma helps, caregivers of all racial and ethnic backgrounds can also use a hand with the day-to-day tasks, says psychologist Steven Zarit, PhD, head of the Pennsylvania State University's department of human development and family studies. Though he says "adult day care" has an unfortunate name, the programs can relieve caregivers' stress by allowing them to work or rest. At the same time, such programs provide a social environment and therapeutic services, like occupational therapy, for older adults, he says.
"Instead of having to provide 24-hour care, caregivers get predictable periods of time that they don't need to provide care," he says. Unlike a private nurse, day-care centers never call in or sick or need a day off, he notes.
ONEgeneration, a day-care facility in Van Nuys, Calif, simultaneously provides services to the young and the old, with good results, says Zarit. The nonprofit research institute serves stroke survivors, people with Alzheimer's and Parkinson's diseases, as well as children from 6 weeks to 6 years old. During the day, the seniors and children meet for several hours of intergenerational activities, such as reading stories. Both groups also complete projects alone that allow them to express their creativity and to socialize.
An article in the 2003 issue of American Journal of Alzheimer's Disease (Vol. 18, No.1, pages 31-37) found that seniors benefit cognitively and emotionally from the program's intergenerational activities--regardless of their cognitive ability. A preliminary finding in a longitudinal project tracking children who participated has also found that, 2.5 years later, they show more empathy toward older adults and people with disabilities than do their peers.
But not all caregivers can afford--or want to--enroll their family member or friend in adult day care. Some may shun outside help because they are new to caregiving, and they don't yet realize the extent of the commitment, says psychologist Sara Honn Qualls, PhD, director of the Gerontology Center at the University of Colorado at Colorado Springs (UCCS).
To help caregivers make the transition, Qualls developed Caregiver Family Therapy, a UCCS Aging Center program that uses trained therapists to help harness the power of entire families to care for an ailing relative. Over several weeks, therapists help caregivers re-evaluate their role during hour-long sessions. The therapist then identifies caregiving tasks and helps assign tasks to various family members based on their various skills. The goal is to ease the primary caregiver's burden and support the entire family through their loved-one's illness.
"There's no magic word or action that can make caregiving easier," says Qualls. "It's a very difficult time. But we can and should provide the best support we can so that no caregiver's health or well-being suffers."
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