Suzanna and Bill live in a whirlwind of shuttling children to school, tending careers and keeping up with household chores, while coping with the added challenge of taking turns staying overnight in the hospital with their ill grandson at least once a week. Vague worries about Bill’s mother just took on new urgency when the hospital informed them that his mother could not return home safely after a recent fall. Suzanna is in treatment for depression, but now she wants to reduce the frequency of her therapy sessions. What would you do?
Caregiving responsibilities touch most of us at some point in our lives. Many become family caregivers for elderly, frail, ill or disabled relatives and life partners. At one point in my family’s life, we resembled Suzanna and Bill while helping a parent with dementia and a child with cancer.
Fifty million Americans provide care to loved ones each year; 22 million do so on a regular basis. Caregiving affects health and well-being. Research shows that long-term caregiving is associated with increased rates of depression, anxiety and insomnia, and increased mortality for those with their own chronic illnesses.
Caregiving is a familiar role with two faces. One face is love, connection, the fostering of healing comfort and the growth that comes from meeting difficult challenges. The other face is caregiver burden. Surprisingly, many people do not self-identify as caregivers; instead, they see themselves as fulfilling family norms, helping out, temporarily stepping in and the like. Susanna and Bill may not see themselves as caregivers; they are “simply” grandparents helping their older daughter care for her critically ill son, parents guiding their adolescents and children monitoring the well-being of aging parents. Families tend to search for help by seeking information on diseases, such as Alzheimer’s disease or cancer. Once a caregiver identifies the disease and the functional demands involved, the issue then becomes “What do I need?” This is where we can help.
APA can prepare psychologists to recognize and reduce the stresses on family caregivers across the life span. I have formed an APA Presidential Task Force on Caregivers, whose members are: Drs. Andrea F. Patenaude (chair), Martha Crowther, Timothy Elliott, William Haley, Barry J. Jacobs and Sara Honn Qualls. Deborah DiGilio is the staff member. I serve ex-officio.
The task force is developing a Family Caregiver Briefcase for Psychologists designed to assist psychologists assess and address the needs of family caregivers that will be available on APA’s Web site. The task force is gathering and organizing resources in useful ways for psychologists and other professionals who work with family caregivers, and have invited divisions and other groups to contribute. Once the briefcase is completed, Susanna’s therapist can use it to find useful resources for addressing her caregiving roles that are key factors in her depression.
In addition, caregiving will be a convention theme this year. We have invited divisions to present programs on any aspect of psychological research, education, intervention, interdisciplinary collaboration or policy formulation that contributes to family caregivers’ well-being.
We are also active in advocating on caregiving issues. APA has long participated in coalitions on caregiving efforts. Our Public Interest Government Relations Office has worked in support of the Lifespan Respite Care Act, Caring for Wounded Warriors Act, Older Americans Act/National Family Caregiver Support Program, Grandparents and Kinship Caregivers, Centers for Disease Control Advancing the Caregiving Agenda, and the Institute of Medicine study on the health implications of caregiving.
We also work with caregiver groups such as the National Alliance for Caregiving and the National Respite Coalition to educate policymakers about caregivers’ needs.
Your role: Please use the Family Caregivers Briefcase to improve the health and lives of caregivers, when it becomes available. As Paul Valery (Tel Quel, 1943) said, “The purpose of psychology is to give us a completely different idea of the things we know best.”