Help & Support #88: Managing FTD with a Neuropalliative Care Approach
Neuropalliative care is an emerging field of medicine dedicated to improving the quality of care for people living with neurological disorders and their families. Palliative care was initially developed as a care model for persons with advanced cancer; however, in recent years, evidence has shown that people with neurological illnesses, such as FTD, can also benefit.
Neuropalliative care can be provided in a variety of settings and is focused on managing both physical and non-physical symptoms, having open discussions about care goals and treatment choices, and coordinating with the person’s healthcare team. According to the the International Neuropalliative Care Society (INCS), healthcare professionals who adminster neuropalliative care focus on “eliciting a person’s values and preferences about their medical care.” INCS adds that neuropalliative care “can be provided alongside curative treatments and clinical trials.”
AFTD has developed informational resources about neuropalliative care. In September 2021, AFTD presented an Educational Webinar called “The Role of Neuropalliative Care in FTD,” featuring Christina Vaughan, MD, of the University of Colorado. Viewers will better understand how individuals with FTD can benefit from neuropalliative care, how palliative care differs from hospice, and when to access it.
Additionally, the Winter 2020 issue of AFTD’s Partners in FTD Care offers a detailed look at how neuropalliative care can support people living with FTD and their care partners. The issue tells the story of Mary S., and her adult sons as they navigate Mary’s FTD diagnosis at age 54 and find support from a palliative care team. The accompanying fact sheet, “What to Do About…”, details how families as well as providers can find out more about palliative care for people living with FTD.
The National Hospice and Palliative Care Organization has developed a tool that can help you find a palliative care organization near you. There can be differences among providers, so recommendations from friends, colleagues, or facility staff may be helpful. Neuropalliative care can be provided in clinics or in the community where a neurologist specializing in palliative care builds the supportive team based on the person’s needs. If you have questions about neuropalliative care, you can talk to your physician or reach out to the AFTD HelpLine at 1-866-507-7222 or email@example.com.
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