As a clinician-educator specializing in family caregiving issues, Barry J. Jacobs, Psy.D. believes psychologists are ideally suited to provide public and professional education about the challenges for family caregivers. “We understand the research findings on the medical and psychological consequences of family caregiving and how to apply those findings to the particular contexts of people’s lives,” he says. “We also have the communication skills—writing and speaking—to convey our knowledge broadly.”

Since the 2006 publication of his general interest book, The Emotional Survival Guide for Family Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent, Dr. Jacobs has given over 200 presentations on family caregiving in 20 states and Canada to groups comprised of physician/nurses, mental health/social service providers and family caregivers themselves.. “I consider these educational activities to be the most gratifying part of my career,” he says.

As the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in suburban Philadelphia, he has talked with over a thousand primary care doctors through residency lectures, national and regional professional trainings, and hospital grand rounds about the needs of family caregivers. “Physicians feel so harried now that they are initially resistant to broadening their scope of inquiry to include family members,” he says.

“But when they see the research about the health effects of caregiving and hear about concrete and time-efficient ways of assessing and helping family caregivers, they are more apt to consider altering their practices.”

For mental health and social service presentations at large conferences such as the APA convention and Psychotherapy Networker Symposium, Dr. Jacobs cites research but also shows video clips with transcripts to illustrate both what caregiving families go through and specific psychotherapeutic interventions for aiding them. “Many psychologists become aware of family caregivers in their clinical practices only after struggling with their own family caregiving ordeals,” he points out.

He speaks to family caregivers at local support groups at retirement communities and the Well Spouse Association and at disease-specific conferences run by organizations such as the Alzheimer’s Association, American Parkinson Disease Association, and Cancer Support Community. He also writes an advice column for the newsletter of the National Family Caregivers Association and is a national spokesperson on caregiving for the American Heart Association. “It’s not enough to exhort caregivers to care for themselves,” he says. “You have to coach them in specific coping skills, such as navigating the complex healthcare system, negotiating with extended family members for increased support, and deriving positive meanings from their self-sacrifices.”

Dr. Jacobs’ interest in family caregiving stems from his experiences as a teenager when his father had brain cancer. While completing a practicum at a physical medicine rehabilitation unit during his training at the Institute for Graduate Clinical Psychology of Widener University, he became convinced that family caregiving should be the focus of his career. “The families I saw felt so stressed and the stakes to them seemed so high,” he says. “I knew I wanted to provide the education and support to ease their difficult passages through caregiving.”

Resources

Websites:

• The Emotional Survival Guide for Caregivers
• Biography 

In her April 2009 appearance on the Today Show after being named one of the country’s top working mothers by Working Mother Magazine, psychologist Linda R. Mona, Ph.D. succinctly expressed the message she’s propounded in various ways throughout her career. “All of us benefit from interdependence,” she told the show’s host, Meredith Vieira, while sitting on her scooter. She added, “I have a team of people that facilitates my parenting.”

Living with a physical disability has given Dr. Mona an appreciation for family caregiving and personal assistance services as means of broadening the choices and direction of people living with all disabilities. Her interest in the interdependence between a disabled individual and a caregiver has led her to study many facets of that relationship, including sexuality. In the past decade, she has become widely recognized for her work as an educator on emotional and physical intimacy and disability.

Dr. Mona has been a frequent speaker on topics such as the sexual issues of disabled veterans of the Iraq and Afghanistan wars at national conventions of organizations including the American Psychological Association, American Association of Sex Educators, Counselors & Therapists, and the Society for the Scientific Study of Sexuality. In her job as a staff psychologist at the Veterans Affairs Long Beach Health System in Long Beach, CA, where she works on the spinal cord and mental health services, she conducts a series of trainings on human sexuality and diversity for pre-doctoral psychology interns and other mental health staff members. She has been a consultant on the sexual needs of disabled individuals for websites, corporations and rehab hospitals. Her writings have included book chapters and articles on using personal assistance services to facilitate the sexual expression of people with disabilities and, most recently, the ethics of fostering opportunities for demented individuals to have sex.

Her chief message to family caregivers is that it is important to maintain physical intimacy with people with disabilities as a way for both parties to enjoy fuller, more gratifying lives. She focuses on the challenge of helping caregivers cope with the wide range of feelings that often surface when they are called on to switch from providing hands-on care in one moment to being a lover the next.

 “I educate family members about differentiating their caregiver and lover roles,” she says, “by symbolizing when they make the difficult shift from one role to another. For example, I might suggest to a family member that she put on a hat when changing a loved one’s catheter. Afterwards, she can take off the hat when she resumes a family role. I also recommend developing clear demarcations of time in order to protect the intimate relationship between an individual with a disability and his caregiver.”

She says that psychologists should address ways of decreasing stress for overtaxed family caregivers. “However,” she says, “we also need to pay equal attention to the nuances of being a person with a disability who uses personal assistance services full-time.” She suggests that psychologists help people with disability learn strategies, including communication and management skills, for having good, healthy relationships with family caregivers and others who provide substantial care.

Resources

Article: Mona, L.R., Cameron, R.P., Goldwaser, G., Miller, A.R.,Syme, M.L., Fraley, S.S.. (2009). Prescription for pleasure: Exploring sex-positive approaches in women with spinal cord injury. Topics on Spinal Cord Injury Rehabilitation, 15, 1, 5–28.

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“When people are fully engaged in their jobs and also have caregiving roles, that’s when they have caregiver stress.” That’s one of the essential messages of developmental psychologist Harvey L. Sterns, Ph.D., the nation’s leading educator on aging and work who has directed the interdisciplinary Institute for Life-Span Development and Gerontology at the University of Akron since 1976. Through his mentoring of scores of masters- and doctoral-level psychology students, his numerous books and book chapters, and his consultations for corporations and agencies over the years, he has helped forge the field of industrial gerontology, one aspect of which includes the sometimes problematic interface between employment and family caregiving.

He tries to impart to psychology students and learners from other disciplines a broad understanding of the needs of family caregivers and knowledge about the network of existing caregiver supports locally and nationally. But he also argues that not all families experience caregiving the same way or need equal amounts of assistance. “Some families only need information,” he says. “Others go through more sturm and drang to reach consensus about decisions and therefore require greater psychological guidance.”

Dr. Sterns would like his students to appreciate that most family caregivers need supportive employers. “If you have a supervisor who understands your caregiving role,” he says, “then you’ll be given the flexibility to work different hours so that you can also attend to your family duties. You’ll have the flexibility to leave the workplace for any emergencies that arise with your loved one.” He commends American corporations such as IBM whose human resource departments offer employees a menu of services, including access to professional care managers to help identify caregiving resources.

But he says students must also understand that family caregiving can and does interfere with some employment roles. And he points out that American business leaders are just beginning to realize the kind of dilemma that workers who are also caregivers face. “We’re not at the tipping point yet,” he says. “Learning to be sensitive to employee’s caregiving needs is just now becoming a regular part of managerial training.”

Another focus of his educational efforts during the past decade has been the transition from full-time career to retirement. Sometimes family caregiving forestalls retirement or hastens it. “We have people who are on the verge of retirement who are also in caregiving roles,” he says. “Some of them have to make the choice to continue working in order to pay for their parents’ $4000 per month assisted living or stay home and care for them. Others may have to care for children and grandchildren.”

He’s had a range of caregiving experiences in his own life. He says, “My parents did quite well as they aged and needed little care. My wife’s father, on the other hand, moved into a long-term care setting where handling interactions with the staff has been difficult. Even as a knowledgeable gerontological psychologist, this has been very challenging for me.”

He adds, “I hope to help young psychologists take the knowledge we already have about family caregiving and find ways of applying it to the facilities and workplaces where family caregivers are trying to do the best jobs they can.”

Resource

Website