In a given year, an estimated 67 million Americans over the age of 18 serve as unpaid family caregivers, according to a 2009 survey by AARP and the National Alliance for Caregiving. They’re tending to children, spouses, parents and other loved ones with disabilities or incapacitating illnesses, and they’re often doing so in addition to full-time work or school. Many spend at least 20 hours a week on caregiving duties, such as ensuring loved ones take their medicines, bathing and clothing them, and even paying their medical bills. For caregivers of people with conditions such as Alzheimer’s disease, the average may be closer to 60 hours per week.
Today’s caregiver, said APA President Carol D. Goodheart, EdD, often plays a role with two faces.
“One face is love, care and connection and the growth that can come when you overcome challenges to take care of a loved one,” Goodheart told attendees during a presidential symposium at APA’s Annual Convention. “The other face is caregiver burden — and that’s where we, as psychologists, can help.”
Research increasingly shows that the health and well-being of caregivers may be the most critical non-medical factor in care-recipients’ state of mind and health. When a caregiver lacks effective coping styles or is severely depressed, for example, the patient is at higher risk of falling as well as suffering a sharper decline in his or her ability to carry out activities of daily living, said Andrea Farkas Patenaude, PhD, a psychology professor at Harvard Medical School and chair of the APA Presidential Task Force on Caregivers, convened by Goodheart. As the U.S. population continues to live longer, more Americans will be caring for loved ones and they’ll need psychologists’ help to reduce their stress, she added.
“Psychologists, with their deep appreciation of family dynamics, their understanding of the trauma of illness and their access to patients and caregivers in hospital, clinic, school, community and therapeutic settings, really are the perfect professionals to deal with caregiving issues,” Patenaude said.
To respond to caregiver needs, the task force will release a Web-based APA Family Caregiver Briefcase for Psychologists in early 2011.
The tool will offer a wealth of information, including a rundown of common caregiving problems and how psychologists can work with caregivers to help them overcome these issues. The briefcase will also provide caregiver-assessment tools to determine a caregiver’s stressors, coping ability and means of social support, as well as evidence-based intervention strategies, said task force member William E. Haley, PhD, a professor in the School of Aging Studies at the University of South Florida.
Effective caregiver interventions typically involve education and skill-building, Haley said. For example, in one of the most successful caregiver interventions, New York University researchers randomly assigned 406 caregivers to one of two groups: One that provided usual care and another that offered two sessions of individual counseling tailored to the caregivers’ needs, as well as four family counseling sessions for the primary caregiver and several family members. In each counseling session, caregivers also received information and referrals for outside caregiving help, financial planning and managing patient behavior problems. Caregivers receiving treatment had access to ad hoc telephone counseling. Within a year of the intervention, researchers found that the depression scores of caregivers in the treatment group declined significantly and remained low for three years. The intervention delayed patients’ placement in nursing homes by an average of a year and a half, said Haley, one of the study’s co-authors (Neurology, Vol. 67, No. 9).
The briefcase will also include resources for psychologists and caregivers including key websites, materials to provide to caregivers, and suggestions for infusing information about caregiving into psychology education and training, including example syllabi, teaching modules and potential dissertation areas related to caregiving. The website will include profiles of psychologists doing research, practice, consultation and advocacy work in the realm of caregiving.
Information on the importance of addressing the needs of culturally and socioeconomically diverse caregiver groups will also be infused throughout the briefcase, said Martha Crowther, PhD, a psychology professor at the University of Alabama. Research has found, for example, that Hispanic caregivers tend to be much younger than non-Hispanic white or black caregivers, and that Asian-American caregivers are almost equally likely to be male or female.
“Understanding these cultural issues and how they contribute to a caregiver’s experience is essential,” Crowther said. “Demand for those with expertise in working with diverse populations of caregivers is growing.”
Amy Novotney is a writer in Chicago.
For more information on the APA Presidential Task Force on Caregivers, contact Deborah DiGilio, APA staff liaison. Create a bookmark now, and check back in early in 2011 for the launch of the APA Family Caregiver Briefcase for Psychologists.
Shifren, K. (Ed.) (2009). How Caregiving Affects Development: Psychological Implications for Child, Adolescent, and Adult Caregivers. Washington, DC: APA.
APA PRESIDENTIAL TASK FORCE ON CAREGIVERS
Andrea Farkas Patenaude, PhD, chair, Harvard Medical School and Dana-Farber Cancer Institute
Martha Crowther, PhD, University of Alabama
Timothy Elliott, PhD, Texas A&M University
William Haley, PhD, University of South Florida
Barry Jacobs, PsyD, Crozer Keystone Health System, Pa.
Sara Honn Qualls, PhD, University of Colorado, Colorado Springs
Carol D. Goodheart, EdD, APA President
Deborah DiGilio, APA staff liaison