Prescription for Hope: Using Palliative Care Concepts to Support Self-Management in Lewy Body Dementia

About this Webinar:

Join us for the next episode of our Community Webinar Series, ‘Prescription for Hope: Using Palliative Care Concepts to Support Self-Management in Lewy Body Dementia.’

Palliative care skillsets provide a great foundation for individuals and families to improve the care they receive, especially with complex conditions like Lewy body dementia. Presented in collaboration with the International Neuropalliative Care Society, ‘Prescription for Hope: Using Palliative Care Concepts to Support Self-Management in Lewy body dementia’ will provide an overview of what palliative care is and how it can support your quality of life. In addition to learning from four experts, you will hear first-hand from a care partner and her experience with palliative care.

Following this presentation, you will be able to:

1. Define the role of palliative care, including hospice care, in LBD.
2. Identify the pillars of palliative care and describe how they can be applied to self-management of LBD.
3. Understand the role of members of the palliative care team.
4. Name resources to help locate and advocate for palliative care services in your health care journey.

Register Now: https://us02web.zoom.us/webinar/register/WN__RaHB6HgQyOPkeJfdKh5GA

Introducing Your Speakers:

Benzi Kluger

Director of the Palliative Care Research Center at the University of Rochester Medical Center (NY) @International Neuropalliative Care Society

Dr. Benzi Kluger is a Professor of Neurology and Medicine and the Director of the Palliative Care Research Center at the University of Rochester Medical Center (New York). He is an internationally recognized leader in the emerging field of neuropalliative care and the founding President of the International Neuropalliative Care Society (www.inpcs.org), an organization dedicated to improving models of care for persons living with neurologic illness and their families. Dr. Kluger’s research focuses on developing, testing and implementing palliative care interventions for persons living with Parkinson’s and other neurologic illnesses and in improving our understanding and treatment of nonmotor symptoms in Parkinson’s, including fatigue and cognitive dysfunction. He is also working on several writing projects (www.benzikluger.com) related to empowering people living with serious illness to better advocate for themselves and to avoid potentially dangerous and expensive medical BS.

Sarah Mitchell Chen

Licensed Clinical Social Worker, Rush University

Sarah Mitchell Chen MSW, LCSW, APHSW-C is a Licensed Clinical Social Worker with more than 15 years of experience working with older adults, adults with chronic diseases, and care partners, specializing in Parkinson’s Disease, Parkinsonism, various forms of dementia, as well as other neurodegenerative conditions. She has spent her career providing care management in long-term care and ambulatory healthcare settings, where she works to address non-medical barriers to wellness and improve health outcomes for patients and care partners. Sarah has completed advanced training and certification in palliative care with an emphasis on helping patients and care partners better understand their wishes and preference for care both medical and non-medical care. In addition to her work with the Rush Movement Disorders Clinic’s Advanced Interdisciplinary Movement Disorders Supportive Care Clinic (AIMS), Sarah also works as a psychotherapist in private practice in Chicago. Sarah earned a master’s degree from the University of Chicago Crown Family School of Social Work, Policy, and Practice with a concentration in Older Adult studies.

Neha Kramer

Palliative Neurologist, Rush University Medical Center

Dr. Neha Kramer is a palliative neurologist at Rush University Medical Center in Chicago, IL. She completed her Neurology residency, Vascular Neurology fellowship and Hospice and Palliative Medicine fellowship at Mayo Clinic Rochester. Since then, she has been practicing at Rush, with dual appointments in the Departments of Internal Medicine and Neurology. She has developed a Neuropalliative clinic, where she treats persons living with Parkinson ’s disease and related disorders, ALS, dementia, muscular dystrophy and complex neuropathic pain. She also works in the Advanced Interdisciplinary Movement Disorders Supportive Care Clinic with Dr. Jori Fleisher, the inpatient hospice service and the inpatient palliative care consult service. Neha is passionate about educating providers of both specialties on the provision of neuropalliative care. She is the founding CoChair of the Education Committee for the International Neuropalliative Care Society. She is also Co-Director of the Education in Palliative and End of Life Care (EPEC)-Neurology curriculum and the 2022 Train the Trainer conference, Co-Director of the first International Neuropalliative Care Certificate Course, and past founding Co-Chair of the Neuropalliative Special Interest Group for the American Academy of Hospice and Palliative Medicine. Outside of work, Neha enjoys meditation and dance parties with her toddler.

Sue E. Ouellette

Chaplain, University of Rochester Medical Center

Sue E. Ouellette, Ph.D. is a chaplain in the division of Neurology Supportive and Palliative Care in the Department of Neurology at the University of Rochester Medical Center. Additionally, she serves the Department of Neurology as associate chair for physician wellbeing. She received her Ph.D. from Kent State University and her Masters of Divinity from Colgate Rochester . She is also a licensed marriage and family therapist who provides mental health services to persons with neurological disorders through the Department of Psychiatry at the University of Rochester. Dr. Ouellette received her Ph.D. at Kent State University and her Masters of Divinity at the Colgate Crozier Divinity School. Previous to coming to the University of Rochester, Dr. Ouellette served as chair of the School of Allied Heath at Northern Illinois University. She is the author of numerous publications focused primarily on the mental health of persons who are deaf or hard of hearing and the project director for many grants in this area.

Malenna Sumral

Patient and Care Partner Advocate, International Neuropalliative Care Society

As a care partner for my husband who had Parkinson’s with Dementia, I experienced neuropalliative care at its best in Dr. Benzi Kluger’s clinic at the University of Colorado. His passion for this treatment model inspired me to volunteer in various ways to promote neuropalliative care. I have served on advisory councils for two of his research projects, have participated in presentations at various conferences, including INPCS in 2021 and AAHPM in 2022, and I am a member of the INPCS Membership Committee. I have been leading a Zoom support group for carepartners of people with a neurologic illness since 2019 and have spoken to other local support groups about neuropalliative care. In addition to that, I have been included as a co-author on a few journal articles published by Dr. Kluger. I consider myself fortunate to be a part of this very important and growing movement to promote the neuropalliative model to healthcare providers and to patients and their families.