UCSF Hosts a Day for Caregivers of Patients with Brain Disorders
On May 4, 2013 over 100 caregivers attended a free workshop at UCSF’s Mission Bay campus focused on coping with the unique challenges of caring for adults with brain disease. Family and friends of patients with all types of brain disorders often struggle with similar issues in caring for their loved ones. The workshop sought to give them practical information from nurses, physicians and other professionals, as well as a day to find support for themselves and connect with other caregivers.
The event was organized by the UCSF Neuro-Caregiver Collaboration – a multidisciplinary group of health care providers who span various neurological disease disciplines. The Collaboration was formed in 2012, when members of the UCSF Neuro-Oncology, Memory and Aging Center, and Palliative Care teams recognized that caregivers of patients with neurological illnesses (such as brain tumors, dementia and traumatic brain injury) are challenged with similar symptoms of the disease and side effects of treatment, as well as cognitive and behavioral changes in their loved ones. The team hopes that by sharing knowledge and resources, educational materials and events for caregivers can be developed to enhance the care of the patient. The workshop was planned in conjunction with the Ida and Joseph Friend Cancer Resource Center of the UCSF Helen Diller Family Comprehensive Cancer Center and the Brain Injury Network of the Bay area.
Caregivers enjoyed a lunch buffet, free parking and complimentary chair massage in a positive atmosphere of support. Many caregivers spoke about how nice it was to have a warm meal and a day to themselves, while others mentioned the humbling experience of hearing from others in their shoes.
Neuro-oncologist Susan Chang, M.D., a member of the planning committee, stressed the importance of recognizing the needs of caregivers and honoring their role in the health of patients with brain diseases. “When we began organizing this event, our main question was ‘how can we help them through this process?’” said Dr. Chang. “Educating them on where they can access resources is so important.”
Healthcare professionals generously volunteered their time and gave presentations on how to navigate the healthcare system, including finding resources to access benefits; to help with estate planning; and to make decisions across the trajectory of illness. Experts also covered issues around safe driving and helping children and adolescents to cope, as well as palliative care, home help, and advanced planning for hospice.
There was also a session on mindfulness – a meditation technique that has been shown to reduce stress among caregivers – which many attendees reported never having been exposed to previously. “We really want to emphasize self-care as an essential component to the health of the caregiver, who often suffers from chronic stress,” said Judy Patt-Smoker, a social worker at UCSF Medical Center who specializes in helping patients and families through the diagnosis and treatment of brain disorders.
At the end of the event, a panel of caregivers shared their experiences with others in order to talk about specific difficulties and about how they arrived at decisions, as well as to give insight to help other caregivers prepare for the future. “This was the best part for me,” said one attendee. “It was so good to hear from others in my situation.”
“One of the most valuable things that happened was the connections people made,” said Nurse Practitioner Margaretta Page. “I was able to introduce two women who both had young children and were going through a lot of the same issues. It helped them to meet and realize they were not alone in this difficult experience.”
The success of the first workshop has the UCSF Neuro-Caregiver Collaboration planning future events to support friends and families of patients with brain disorders. With the understanding that supporting patients means supporting caregivers, UCSF is committed to helping them work through the challenges of providing help for their patients.
A variety of resources for caregivers of patients with brain disorders can be found at: https://wiki.library.ucsf.edu/display/NeurologyCaregiverCorner/Home
The UCSF Neuro-Caregiver Collaboration would like to offer special thanks to the Gordon Murray Caregiver Initiative, Lady Bess Fishback and UCB, Inc., whose financial support made this day possible. We are also grateful to the UCSF Office of Development and the volunteers who offered their time.