The Michael J. Fox Foundation for Parkinson’s Research (MJFF) is partnering with Acadia Pharmaceuticals to provide patients and caregivers with free educational materials focused on cognitive changes and other non-motor symptoms of the disease.
Of the roughly six million people globally who live with Parkinson’s, some 40% may be affected by dementia, and 25% may experience milder cognitive problems. Many patients worry that they, too, will develop issues.
“Will I get dementia? What can I do now to prevent it? These are just a few of the questions I hear regularly from patients with Parkinson’s and their families,” said Rachel Dolhun, MD, MJFF vice president of medical communications, in a press release.
“This partnership aims to educate the community and to empower people to take action today — whether that’s starting a conversation with family to lessen fear, or practicing healthy habits to boost brain health,” Dolhun said.
With backing from Acadia, MJFF will release an “Ask the MD” video, plus a webinar and podcast. Next spring, it will relaunch “Navigating Cognitive Changes in Parkinson’s Disease,” a guide will include cutting-edge information about therapies and scientific investigations.
The overarching goal of the partnership is to get people talking about changes in thinking and memory in Parkinson’s. Stigmas and misperceptions about Parkinson’s and its symptoms can hamstring research into its prevention and treatment.
“Our collaboration with The Michael J. Fox Foundation will support more education, and ultimately enable better care for individuals affected by Parkinson’s disease,” said Ponni Subbiah, MD, senior vice president, global head of medical affairs, and chief medical officer at Acadia.
“There is an urgent need for more resources to address potential cognitive, behavioral, and neuropsychiatric symptoms associated with dementia,” Subbiah said. “This partnership will play a key role in connecting patients and their families to more tools to navigate the entire course of their disease.”
While non-motor Parkinson’s symptoms don’t affect movement, coordination, or physical tasks, they can be more difficult to manage and be more disabling than motor symptoms such as tremors, muscle rigidity, impaired balance, and slowness of movement. In fact, studies have shown that people develop non-motor symptoms — cognitive changes, dementia, sleep problems, constipation, and fatigue — years before they’re diagnosed with Parkinson’s.
Cognitive impairment in Parkinson’s is characterized by predominant executive function deficits, attention difficulties, visuospatial dysfunction, slowed thinking, problems finding words, and difficulties in learning and remembering information.
Such changes can range from Parkinson’s disease mild cognitive impairment (PD-MCI) to Parkinson’s disease dementia (PDD). PD-MCI can be detected only by various means of comprehensive non-psychological observations and normally does not affect patients’ daily operations. PDD hits more than one area of cognition and is severe enough to impair social or working functions.
As the population ages, the number of people with Parkinson’s is expected to double to 12.9 million by 2040.
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