Individuals with bipolar disorder have severe mood swings, which can last several weeks or months. These can include feelings of intense depression and despair, manic feelings of extreme happiness, and mixed moods such as depression with restlessness and overactivity.
About one percent of adults will experience bipolar disorder at some point, usually starting during or after the teenage years. Men and women are equally likely to be affected. It causes significant distress, disability and marital problems, and is linked to abuse of alcohol, drugs and other substances.
Caregivers of people with bipolar disorder face different challenges than with other illnesses. The caregiver will be affected by cultural and social attitudes to the illness, and these have important effects on the level of burden experienced. Manic episodes of the illness are very disruptive to daily life, work and family relationships. Great demands may be placed on family members to be involved in caregiving. These demands can persist even during remission, where residual symptoms are often still present.
Psychiatrist Dr. Alan Ogilvie of Warneford Hospital, Oxford, UK, believes, “The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar [straightforward] depression.” Due to the cyclical nature of the illness and the stresses arising from manic and hypomanic episodes, it “causes uncertainty regarding how best to structure family interventions to optimally alleviate burden.”
Studies on U.S. caregiver burden in bipolar disorder suggest that the burden is “high and largely neglected.” As well as depression, caregivers can experience poor physical health, low social support, disruption of household routine, financial strain, and can neglect their own health needs.
According to Eduard Vieta, MD, and colleagues at the University of Barcelona, Spain, the most burdensome aspects for caregivers are the patient’s behavior, especially hyperactivity, irritability, sadness and withdrawal. Caregivers are also concerned over the patient’s work or study, and social relationships. “Caregivers are especially distressed by the way the illness has affected their emotional health and their life in general,” say the researchers.
A 2008 study from The Netherlands found that caregivers try to cope in different ways, but those who improve their coping skills over time experience a lower burden. The researchers add that different phases in the caregiving process require different coping skills. They believe that caregivers in distress should be given support and taught skills to cope effectively in order to stay well.
As well as access to education and support, caregivers can benefit from easier access to the treatment team. Where possible in terms of confidentiality, email has the potential to connect caregivers with the team. Internet-based support and educational programs can also overcome obstacles to access for caregivers, especially in rural areas.
Programs available include Support and Family Education (the S.A.F.E. Program), which is a family “psychoeducational” program for serious mental illness, created in the Veterans Affairs (VA) system. Participants report high levels of satisfaction, and greater attendance is linked to better understanding of mental illness, awareness of resources, and ability to engage in self-care activities.
Other options are community-based services such as the National Alliance on Mental Illness’s Family-to-Family education program or the Journey of Hope family education course. These are not clinical services; they are run by unpaid peer volunteers. But they have the potential to reduce caregivers’ burden and increase coping and knowledge of mental illness.
Studies have found that this sort of program can result in reduced caregiver burden and risk of burnout. Susan Pickett-Schenk, Ph.D. of the University of Illinois at Chicago, says, “Education and support in the form of a structured course is effective in meeting the caregiving needs of relatives of persons with mental illness.”
They have a positive effect on the burden of relatives of psychiatric patients, agrees Professor Pim Cuijpers of the Netherlands Institute of Mental Health and Addiction. He did an analysis of 16 studies and found that these programs “can have considerable effects on relatives’ burden, psychological distress, the relationship between patient and relative and family functioning.” Professor Cuijpers adds that interventions with more than 12 sessions have larger effects than shorter interventions.
Caregivers for patients with bipolar disorder also cite family support and social support, talk therapy, exercise, having responsibilities and a stable schedule among key factors that help keep themselves and the patient well.
Ogilvie, A. D., Morant, N. and Goodwin, G. M. The burden on informal caregivers of people with bipolar disorder. Bipolar Disorders, Vol. 7, April 2005, pp. 25-32.
Goossens, P. J. J. et al. Family Caregiving in Bipolar Disorder: Caregiver Consequences, Caregiver Coping Styles, and Caregiver Distress. International Journal of Social Psychiatry, Vol. 54, July 2008, pp. 303-16.
Perlick, D. A. et al. Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder. Bipolar Disorders, Vol. 9, May 2007, pp. 262-73.
Reinaresa, M. et al. What really matters to bipolar patients’ caregivers: Sources of family burden. Journal of Affective Disorders, Vol. 94, August 2006, pp. 157-63.
Pickett-Schenk, S. A. et al. Changes in caregiving satisfaction and information needs among relatives of adults with mental illness: results of a randomized evaluation of a family-led education intervention. The American Journal of Orthopsychiatry, Vol. 76, October 2006, pp. 545-53.
Cuijpers, P. The effects of family interventions on relatives’ burden: A meta-analysis. Journal of Mental Health, Vol. 8, May/June 1999, pp. 275-85.
Keeping Care Complete, an international survey of 982 family caregivers of individuals with schizophrenia, bipolar disorder and schizoaffective disorder. Survey developed by the World Federation of Mental Health (WFMH) and Eli Lilly and Company.