Reframing the Caregiver and Patient Mindset: Coping with the ‘New Normal’

Printer Friendly

Duke University Expert Among Presenters of Caregiver-Focused Strategies at the American Brain Tumor Association’s National Meeting

July 23, 2015

The health and wellness of brain tumor caregivers, often a spouse, parent, sibling or family member, is pivotal in the management of a brain tumor diagnosis. The American Brain Tumor Association presents interactive sessions that address shifting the mindset of caregivers and family members at the ABTA’s 2015 Patient and Family Conference, July 24-25 in Chicago.

“We have understood for a long-time now that caregivers and families play a vital role in one’s experience with a brain tumor diagnosis and treatment,” said
Elizabeth M. Wilson, President and CEO, American Brain Tumor Association. “Caregivers take on important responsibilities that can contribute to emotional and personal stress. That’s why the ABTA’s national patient and family conference is tailored to bring real-world strategies to caregivers coping with the unique needs of caring for a loved one with a brain tumor.”

According to studies of brain tumor families and caregivers’ experiences, they provide extraordinary uncompensated care that include significant time and energy over several months or years and may neglect their own needs.[1] Caregivers may also perform physical, emotional, social or financially demanding responsibilities that may lead to stress.[2]

A brain tumor diagnosis and subsequent treatment may result in sudden or emergent care and is especially stressful on the patient and the caregiver,” said Victoria Leff, MSW, LCSW, ACHP-SW at Duke University Hospital. “Re-shifting the way caregivers cope goes a long way to effectively caring for the brain tumor patient.”

Leff will present the session “The New Normal: Coping with Uncertainty”. Additional sessions for caregivers and families are below.

According to Susan Chang, MD, MD, director of the Division of Neuro Oncology, University of California San Francisco and a session moderator at the conference, “This is not an illness only of the patient. Every patient comes to their appointments with a family member, and they are often the ones who are the patient’s advocate. They want to know if they are doing enough, they want to feel they are part of this process. The ABTA’s conference is a tremendous forum for learning and sharing information and we all benefit from the experience.”

The ABTA’s two-day national conference is the largest gathering of brain tumor patients, caregivers, healthcare professionals and researchers, attracting more than 200 attendees who come together for education, support and networking opportunities.


Founded in 1973, the American Brain Tumor Association was first and is now the only national organization committed to funding brain tumor research and providing information and education on all tumor types for all ages. For more information, visit or call 800-886-ABTA (2282).

# # #


Breakout Session: Caring for the Caregiver:
Strategies and Resources for Successful Caregiving

Presented by Jean Arzbaecher, RN, MSN, APN
University of Illinois Chicago
July 25, 2015, 11:15 a.m. CT

Breakout Session: Quality of Life: Managing Your Symptoms
and Finding Support

Presented by Kathy Lupia, MSN, CNP
Cleveland Clinic Burkardt Brain Tumor & Neuro-Oncology Center
July 25, 2015, 11:15 a.m. CT

The New Normal: Coping with Uncertainty
Presented by Victoria Leff, MSW, LCSW, ACHP-SW
Duke University Hospital
July 25, 2015, 1:45 p.m. CT

Survivor, Caregiver and Professional Panel on Living with a Brain Tumor
Moderated by Donna VanRyn and Paul VanRyn, Brain Tumor Survivor and Caregiver
July 25, 2015, 2:45 p.m. CT

[1] Schubart, J., Kinzie, M., Farace, E. Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology 2/2008.

[2] Swartz, Jonas, Keir, S. Program Preferences to Reduce stress in Caregiver's of Patients with Brain Tumors. Clin. Jour. Of Onc. Nursing  2006 vol. 11 (5).