Parkinson’s Disease Foundation Reaches Out to Caregivers

As part of its National Family Caregivers Month effort, the Parkinson’s Disease Foundation (PDF) a research, education and advocacy organization, is offering free resources to address the unmet needs of care partners of people living with Parkinson’s disease. PDF is inviting Parkinson’s disease care partners and loved ones to access the advocacy organizations’ free programs by visiting https://www.pdf.org/caregivers_month.

The PDF is working for people with Parkinson’s disease by funding promising scientific research while supporting people living with Parkinson’s disease through educational programs and services. Since its founding in 1957, PDF has dedicated nearly $110 million to fund work of scientists throughout the world, and nearly $47 million to support national education and advocacy programs.

Because of its chronic and progressive nature, Parkinson’s disease, a neurological disorder estimated to affect nearly one million people in the U.S., is often a life-changer for an extended care network of family members, loved ones and friends. They observe that this will be especially true for the primary Parkinson’s care partner, who often must schedule and organize medical appointments, therapy sessions, and prescriptions, and as the disease progresses, may be obliged to shoulder more physically demanding tasks such as helping to dress and bathe a loved one.

“As a caregiver to my husband Len, who lives with Parkinson’s, I know first-hand how the disease impacts family and friends,” says Elaine Casavant, RN, of Lansing, Michigan, a member of the PDF People with Parkinson’s Advisory Council. “The good news is that at every step of our journey from the moment of diagnosis when we become care partners to our gradual transition to caregivers PDF is available to support us.”

As the disease progresses, people with Parkinson’s may experience a variety of cognitive changes.

The PDF says in surveys it has conducted, care partners of people with Parkinson’s disease have overwhelmingly reported an unmet need for more information on how they can help their loved ones cope with changes in their cognitive abilities. In response, the PDF held its annual free caregiving online seminar on the topic of cognition — “Cognitive Issues: Advice for Parkinson’s Care Partners” — on Nov. 10, led by Rebecca Gilbert, MD, PhD, a Clinical Associate Professor of Neurology at the NYU Langone Medical Center and the NYU Langone Parkinson’s and Movement Disorders Center. In addition to caring for people living with Parkinson’s disease as a movement disorders specialist, Dr. Gilbert is involved with a variety of research studies in Parkinson’s, and author of PDF’s ExpertBriefings interactive educational series. These free continuing education units are offered to qualifying health professionals via PDF’s sponsorship of the American Society on Aging.

A recording of the seminar’s proceedings will be available to anyone on the PDF website beginning Tuesday, Nov. 17, 2015.

Care partners and loved ones are also invited to share their greatest challenges and unmet needs through PDF’s 10-question Parkinson’s caregiver survey. Survey participants can respond online, by mail or by phone. PDF will use the results to plan future educational programs.

In addition, the PDF invites care partners and loved ones to find support by contacting its toll-free National HelpLine at (800) 457-6676 or by email at [email protected], Monday through Friday, from 9:00 a.m. to 5:00 p.m. ET. PDF’s team of information specialists can point care partners toward local support groups and resources, and can send free educational publications from PDF’s extensive line of brochures, fact sheets and DVDs. For non-English speaking callers, interpreters are available in more than 200 languages.

“There are many heroes in the Parkinson’s community and care partners are certainly one unsung group,” says Robin Anthony Elliott, President of PDF. “During National Family Caregivers Month, we recognize their contributions and urge them to take advantage of PDF’s free tools to help them care for themselves and their loved ones who live with Parkinson’s disease.”

This year’s caregiving online seminar has been made possible by educational grants from AbbVie, Inc., Acadia Pharmaceuticals Inc., and Lundbeck LLC. It was designed in collaboration with Dallas Area Parkinsonism Society (DAPS), Houston Area Parkinson Society (HAPS), Michigan Parkinson Foundation (MPF), the Neuro Challenge Foundation (NCF), Parkinson Association of the Carolinas (PAC), Parkinson Association of the Rockies (PAR), Parkinson’s Association (PA), and Parkinson Support Center of Kentuckiana (PSCKY).

To learn more, visit:
https://www.pdf.org/caregivers_month

Sources:
Parkinson’s Disease Foundation
National Family Caregivers Month