George Washington University’s (GW) Robert Kaiser, M.D., published a paper in The Gerontologist on the challenges he faces as a caregiver for his widowed mother of 90 years, who has a neurocognitive disorder and multiple medical conditions. Aptly titled “The Insiders as Outsiders: Professionals Caring for an Aging Parent,” Kaiser details the many obstacles experienced by himself and his sister, who is a co-author.
“My sister, Susan, is a geriatric social worker. As health care professionals, we suddenly found ourselves on the other side of things as caregivers. Even with our training and experience, it was extremely difficult to manage our mother’s care. Fortunately, we were able to catch and correct major mistakes, such as medication errors, undertreatment of pain, inappropriate assessment, and more,” said Kaiser, associate professor of medicine at the GW School of Medicine and Health Sciences. “We wrote about our experience to highlight the many issues caregivers face as they care for loved ones. We also wanted to provide solutions.”
Using their personal story, they proposed solutions for the problems they personally encountered, focusing on: the adoption of dementia-sensitive and patient- and family-centered care, improved communication, better management of information, expediting care, changing reimbursement and regulation, and improving discharge planning and placement.
“Given our backgrounds, we thought we fully understood the challenges of using the medical system, but we were still not sufficiently prepared for how difficult it would be to coordinate our mother’s care, prevent adverse consequences, and protect her from harm,” said Kaiser. “In a dysfunctional health care system, families and caregivers are the ultimate fail-safe mechanism and they need more support.”
The main issue highlighted in the paper is the lack of communication between and among clinical teams, and with patients. According to Kaiser, this creates misunderstandings and errors, with potentially serious ramifications. They found the patient and family are not consistently listened to, or integrated, into the clinical team, also creating adverse consequences. Kaiser recommends that if a caregiver is unavailable, a geriatric case manager, advanced practice nurse, or transition coach should be appointed. He recommends caregiver assessments be made when patients are admitted and that more is done to help family caregivers access the training and help they need to be successful advocates and care managers. Kaiser believes these changes will strengthen the system, giving the type of care all patients and families deserve.
This paper is part of a special issue of The Gerontologist, “Aging – It’s Personal,” which will be published in February 2017. The work was previously presented at the Gerontological Society of America’s annual meeting in November 2015 and the American Geriatrics Society’s annual meeting in May 2016.
