November/December 2011 Issue
Aging Parents of Adults With Serious Mental Illness
Parents of people with serious mental illness have often spent a lifetime caring for the special needs of their children. What type of support do these parents need as they age and have special needs themselves?
In families affected by individuals with serious mental illness (SMI), caregiving often falls primarily to the parents. As the individual with SMI ages, so do his or her parents. Although accustomed to the challenges of caring for a child with SMI, aging parents face additional difficulties, especially if they have not had social work interventions.
“Aging parents are a hidden population in the mental health arena. They are unpaid and uncelebrated,” says Allan V. Kaufman, PhD, MSW, professor emeritus at the University of Alabama School of Social Work and lead author of a study published last year in the Journal of Social Services Research on a home-delivered social work intervention for aging parental caregivers of adult children with schizophrenia. The amount of care provided to adults with SMI by their aging parents is so substantial that if parental caregivers suddenly stopped providing care, public programs could never handle the large population of adults with SMI, he says.
Aging parental caregivers are the backbone of long-term support for adult children with SMI. Kelly Aschbrenner, PhD, a research assistant professor in the departments of psychiatry and community and family medicine at Dartmouth Medical School and an investigator at the Dartmouth Institute’s Center for Aging Research, says, “Aging parents provide years of ongoing support for an adult child with a severe and persistent mental illness, such as schizophrenia, bipolar disorder, and major depression, when debilitating symptoms and illness behaviors produce obstacles to social and occupational functioning and independent living.”
Aschbrenner and colleagues recently authored a study published in Psychiatric Services on the stress burden vs. personal gain for older parents who care for their adult child with SMI.
One of the biggest problems for aging caregivers is dealing with symptoms associated with discontinuing medications for SMI. “Coming off medications really exacerbates SMI symptoms,” Kaufman says.
In addition to lack of compliance, which is a common issue for adults with SMI, medications may be discontinued due to side effects, forgetting to refill prescriptions, financial hardship, and/or denial of insurance coverage. This increase in symptom severity adds to the high level of stress already experienced by aging caregivers. Additionally, the current economy creates an even greater burden.
Susan Gingerich, MSW, who works in private practice and as a trainer and consultant in suburban Philadelphia, says, “When a person develops SMI, the whole family, including parents, grandparents, siblings, and other relatives who have regular contact with the person, benefits from receiving basic information about the illness and the principles of its treatment, strategies for reducing stress, skills for increasing positive communication, practice in using a step-by-step family problem-solving method, and support for establishing household rules and sharing responsibilities.” These interventions are especially beneficial when the individual with SMI lives with his or her family.
Research for Relief
“Most research to date has focused on care recipients and family counseling rather than caregivers,” Kaufman notes.
While many studies have examined family counseling and interventions, very little is known about what types of interventions might be most effective in assisting aging parental caregivers. Kaufman and colleagues conducted a pilot study of a unique home-based intervention for aging parents and their adult children with schizophrenia. The goal of this new intervention is to increase the emotional well-being and lower the stress burden for aging parents, Kaufman explains.
“We know from other research that parents and family members who are asked to come to a facility for counseling or other social services are not likely to come. The home is a more effective setting for families with adult children with SMI, and the pilot study was designed to see if our intervention could be successfully delivered at home in 10 sessions by an MSW-level social worker,” he explains.
According to Kaufman, this home-based intervention is much different from current and past interventions, which tend to focus on families in general, not on older parents as caregivers, and primarily use psychoeducation. “Our intervention goes far beyond psychoeducation and includes a cognitive therapy component,” he explains.
In the pilot study, families received instruction on problem-solving techniques and education and information about schizophrenia, followed by sessions that included cognitive therapy, stress management, behavioral management, and future planning.
For instance, cognitive therapy delivered by a social worker helped aging parents learn to deal with behavioral management issues and helped the adult child with schizophrenia learn about appropriate roles in the family setting. Behavioral management sessions helped parents in identifying and dealing with problem behaviors, such as substance abuse, hostility, and interpersonal relationship difficulties, and assisted parents in averting potential crises or emergencies involving their adult child. The pilot study yielded positive and promising results, including greater life satisfaction and less emotional stress reported by aging caregivers.
Findings from research by Aschbrenner and colleagues suggest that recovery-oriented approaches that strive to improve self-esteem and self-efficacy for the adult child with SMI may also benefit the aging parental caregiver.
“Since there already exists a plethora of studies documenting the toll of coping with an adult child’s mental illness, we wanted to also examine the potential positive side of caregiving to inform a strengths-based approach to working with older parents of adults with SMI,” Aschbrenner says.
An analysis of the stressors and resources associated with caring for adult children with SMI found that the adult child’s contributions to the household had a significant and positive association with the parent’s experience of personal gains related to caregiving. Participation in support groups and having confidantes were also associated with positive feelings toward caregiving.
“The amount of help a parent provided to the child was related to the amount of assistance the child provided to the parent, indicating a positive, reciprocal relationship,” Aschbrenner says.
Research by Kaufman, Aschbrenner, and others suggests that social work support for aging parental caregivers may need to include interventions and resources that specifically help the adult with SMI assume a more positive role in the family home and help the aging parent recognize successful ways to cope with caregiving challenges.
Planning for the Future
“In my work with aging caregivers, I’ve found that most do not think, or want to think, about what happens to their adult child when they die,” says Kaufman.
Because it may be painful for aging parents to think about what will happen to their adult child when the they die, parents often avoid planning for the adult child’s continuing care. The complicated nature of estate planning for an adult child with SMI, which can involve government benefits and financial management, also contributes to avoidance.
“Whether parents and their adult children develop plans for the future has important consequences for the entire family,” Aschbrenner says.
Aging parents often assume siblings or other family members will take on the role of caregiver after their death. According to Kaufman and Aschbrenner, among the most critical issues for parents to consider are residential and financial planning as well as the future involvement of other family members in caregiving. Establishing legal documentation and plans for continuing care can ensure the adult child with SMI is properly cared for and alleviate worries for aging parents later in life when their own health may be declining.
As parents age, they confront the stress of coping with the challenges of having an adult child with SMI while dealing with their own aging-related changes in health, such as physical disability and greater vulnerability to illness.
“Consequently, parents’ ability to provide the support and care needed by an adult child with SMI may become compromised. Making plans for the future is especially crucial when adult children are living with their aging parents,” Aschbrenner emphasizes.
While many parents hope that siblings will care for a brother or sister with mental illness, families may put off discussing the future caregiving involvement of siblings. Early discussions between aging parents and their children without disabilities to clarify what roles siblings will play can help families avoid having to make future caregiving decisions in the midst of a family crisis, when the aging parent is incapacitated or dies, says Aschbrenner.
Parents may need considerable help with learning about available residential and financial planning resources and with involving siblings and other family members in future care, she says. The home-based intervention under investigation by Kaufman and his colleagues includes two sessions with a social worker to help aging parents develop a concrete plan for the continuing care of their adult child after a caregiver’s death.
Data from the pilot study by Kaufman and colleagues will form the basis for an application to the National Institute on Aging for funding of a larger and more rigorous study of the home-based intervention.
In today’s economic climate of uncertainty for funding of social services, family support is essential for adults with SMI. There is a clear need for evidence-based social work interventions to enable aging parents to more effectively handle the variety of emotional, financial, familial, and continuing care challenges they experience every day in caring for an adult child with SMI.
— Jennifer Van Pelt, MA, is a Reading, PA-based freelance writer and frequent contributor to Social Work Today.
Avoiding a High-Stress Holiday Season
• Continue to follow the holiday traditions that are most important to the family, adapting them as needed.
• Involve the person with SMI in the planning of events and allow them to do what they can to assist with meal preparation, decorating, gift wrapping, etc.
• Adjust the location, length of time, and intensity of holiday events to make everyone comfortable. For example, the person with SMI may prefer to attend a few hours of Thanksgiving dinner rather than make a whole day of it.
• Expect that the adult with SMI may need breaks during the holiday event and identify a place where he or she can spend some time alone.
• When travel is involved, prepare the adult with SMI in advance for logistics, such as security rules at the airport or taking rest stops during car trips.
• If some family members have not seen the adult with SMI in a long time, it may be helpful to prepare them in advance about the person’s mental condition.