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Introduction: As people continue to live longer, more Americans are caring for someone with a chronic condition, disability or old age. According to the Caregiver Action Network, there are approximately 90 million family caregivers in the U.S. today and two out of every five adults care for a family member. As the baby boomer generation ages, caregiving will continue to be a crucial issue among Americans.
Steven Zarit, PhD, is a distinguished professor in the Department of Human Development and Family Studies at Penn State University and adjunct professor at the Institute of Gerontology, College of Health Sciences, Jönköping University in Sweden. He has conducted numerous research studies on caregivers and developed interventions and programs to lower burden and improve well-being of caregivers. He also studies intergenerational family relationships and health and functioning in very late life. He serves on the board of directors of the National Adult Day Services Association and is a former Alzheimer's Association board member.
APA recently asked Dr. Zarit the following questions: ________________________________________APA: How has the role of caregiver changed in the U.S.? Given the growing diversity of the U.S. population, how does ethnicity and culture factor into caregiving today?
Dr. Zarit: Although historical statistics are rare, it is clear that more people are providing ongoing care to family members for disabilities and other special needs than ever before. A 2009 report from the National Alliance on Caregiving indicated that 28 percent of adults are providing regular help to another person. This care mostly goes to an older person, but it may also include younger individuals-special needs children, individuals with severe chronic mental health problems and so on. Looking specifically at older people, the amount of care has increased because people are living longer and reach ages where disabilities are common. Furthermore, people appear to live longer than in the past after the onset of disabilities, including the cognitive problems associated with neurodegenerative conditions, such as dementia.
Another change is that families have fewer resources for providing care. Family care has often been taken on by women in the family, specifically daughters and daughters-in-law. Over the last 50 years, more women entering the workforce has raised the challenge of how to maintain employment while providing care to an elder while, in some cases, also taking care of children. Smaller family size also means there are fewer offspring for providing care to a parent. One benefit of increased longevity is that survival of both spouses in a marriage means that if one of them becomes disabled, the other will usually be able to provide care. There are probably more spouses than daughters now providing care, although their own age and health sometimes is a limiting factor.
There is great diversity among caregivers. One difference is a somewhat greater commitment among African-Americans to helping older parents. One recent paper found, for example, that middle-aged African-Americans provided relatively more help to parents and somewhat less to their children than did whites, and this difference was associated with stronger feelings about the importance of helping one's parents.
APA: What are some of the most significant psychological challenges for someone who has assumed the role of caregiver for a parent or other relative?
Dr. Zarit: The psychological challenges depend in part on the extent of care. Caregiving can range from providing occasional and minimal care to giving ongoing, extensive and sometimes full-time care. These challenges also depend on the relationship between caregiver and care recipient—it is different for a spouse than for an adult child, for example, to provide care—and the quality of the relationship. In intense care, high stress situations, the challenges are considerable. Caregiving can take up most, if not all, of the caretaker's time. It can feel like you are always on call and needing to be vigilant. It can also feel like you are engulfed - your life has become just caring and you cannot do the other things that have been important and rewarding. Another major challenge is coordinating care with doctors and other care providers. Our systems for supporting caregivers are complicated, confusing and underfunded, and caregivers often feel frustrated and alone in trying to navigate through various services.
The other major psychological challenge is that care takes place in the context of a relationship that has a long, complex history. It is helpful in managing difficult care situations to have some emotional distance from the care receiver, so as to plan out appropriate care strategies. But this can be difficult for many caregivers because of the long history, both good and bad, of the relationship. Caregivers may feel criticized and not appreciated by a parent or spouse they are caring for, or by siblings and other relatives.
APA: How common is it for individuals who become caregivers of family members to have specific training or guidance? What would this kind of training entail? Is it available and where would one get it?
Dr. Zarit: Few caregivers get training and guidance when they transition into the role. Most never receive any training at all over the entire course of caregiving. The most likely sources are support groups through the Alzheimer's Association or other community groups, as well as state and local Area Agencies on Aging. Unfortunately, not enough clinical psychologists have sufficient training in these issues.
Training should begin with practical information about the person's disease, how to manage it and include information about resources that can be helpful for the care receiver and caregiver. Beyond that, caregivers have been found to benefit from learning problem solving approaches, whether that means learning to manage behavioral or emotional problems of the care receiver, learning to seek more help from other family members or balancing caregiving with other areas in their lives.
I am involved in a project led by Carol Whitlatch, PhD, of the Benjamin Rose Institute on Aging in Cleveland, where we provide training sessions for people with mild Alzheimer's disease or other neurocognitive disorders and their care partner. Our goal is to identify the preferences held by the person with dementia about how he/she wants to be treated in the future when the disease has progressed, and for the care partner to know these preferences and have a plan for providing care. We believe the program will help prepare caregivers for the challenges that lie ahead, including the need to bring in assistance to help with providing care. The program is still being tested, but it has been very popular among the people who have participated so far.
APA: What does psychological research say about the effect - good or bad -- that long-term caregiving can have on an individual?
Dr. Zarit: Research has shown that intense caregiving situations can be harmful to a caregiver's health and well-being. Caregivers in these situations have higher rates of depressive symptoms, anger, lower positive emotions, greater health problems and higher mortality than age- and gender-matched individuals.
However, many caregivers also gain a sense of satisfaction from providing care. They feel they are doing the right thing for a parent or spouse, and this can help them deal with the frustrations they experience.
APA: How can a person determine if he or she would make a good caregiver for a family member?
Dr. Zarit: Within families, it is often the person who is good at providing care, and may already do so in other roles. But, all caregivers probably need to learn strategies that will help them be effective—patience, listening to the care receiver, gaining some emotional distance, managing time so that they can get regular breaks, calling on others for help, including family and paid help. In other words, not trying to do everything alone - this is a common pitfall for many caregivers.
APA: What are the psychological benefits and/or drawbacks of a family member acting as a caregiver versus a paid professional? Dr. Zarit: I would not characterize this as an "either-or" issue. When care is more than minimal, it works best when there is a partnership between the family caregiver and paid professionals, who provide regular relief, either through home care or an adult day care program. Family caregivers may anticipate drawbacks to using paid help, such as their parent or spouse may not like the helper or program, but good programs can overcome those types of barriers. When care is around-the-clock and the caregiver and care receiver are in constant company of one another, both of them will welcome a change of scene.
Turning care over to paid help can be difficult, even for a few hours a week. Family caregivers feel guilty or are convinced that no one else can provide the right kind of help for their parent or spouse. Placing a relative in a nursing home can be extremely difficult and challenging. Furthermore, caregiving does not end at the institution's door. Family members can continue to provide help in the institution and may encounter a variety of new challenges, such as figuring out their role in the institution and how to work with staff.
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