Beaumont at Bryn Mawr recently became one of a handful of Life Plan Communities in the U.S. that is Parkinson disease-certified by the Parkinson & Movement Disorder (PMD) Alliance. Christy Lane, MHA, FACHE, V.P of Health Services at Beaumont, worked through the certification process together with Dr. Richard Lange, a Beaumont resident and caregiver to partner Jeff Klein. Their story is one of perseverance, optimism, and hope.
According to the Parkinson’s Foundation, nearly 1,000,000 people in the U.S. are living with Parkinson’s disease and almost 90,000 people are newly diagnosed with Parkinson’s every year. After Alzheimer’s, Parkinson’s has become the second-most-common neurodegenerative disease, for which the greatest risk factor is age. As a result, senior care and retirement communities must prepare for what the NIH calls “emerging evidence of a pandemic.”
Richard was caring for partner Jeff, who had been diagnosed with Parkinson’s 12 years earlier, when he realized they needed additional help. “Jeff was getting sicker,” he said, “and especially during COVID, it was difficult to get the extra help we needed. I had stopped working to care for Jeff, but I was only 64 – too young to move to an isolated apartment in some care facility.”
Thus began their search for a supportive community in the Philadelphia area that would allow them to continue to embrace life: a full-serve community, beautiful surroundings, near public transportation, close to everything the bustling city offers – yet with a home of their own. “That was mid 2021. Not one community we visited was Parkinson’s-certified, including Beaumont. But the management team and the residents we met with were very receptive to changing that and to supporting Jeff in every way possible. That attitude and the fact that Beaumont is resident-owned meant that changes could be made and that we could buy and customize a villa to give Jeff the freedom to live independently.”
Christy Lane oversees Beaumont’s continuum of care and has held positions in health leadership and senior care for over 20 years. “When I came to Beaumont in 2022, there were only a few Parkinson’s-certified communities in the country,” she said. “which highlighted that the unique needs of those living with Parkinson’s were not yet fully realized in the post-acute space. Yet there were 14 residents at Beaumont living with Parkinson’s. So, with Dr. Lange’s support, we set out to accommodate them and all future residents.”
“The certification process took about four months,” she continued, “and the key was to create awareness with both residents and staff of Parkinson’s…the signs and the unique needs.”
Dr. Lange had previously conducted mini-focus groups with resident patients and caregivers to develop a baseline for ‘needs-and-wants’, which Christy used in a town hall presentation. After that initial presentation, 80% of all Beaumont staff were required to watch two 45-minute videos about Parkinson’s, and department directors were given additional video material. “We had an impressive 96% engagement with employees, and everyone stepped up,” she added. “Like Elizabeth Bennett, our Nurse Practitioner, who continues to integrate Parkinson’s protocols throughout our personal care and nursing care facilities. Miriam Quinn, our Director of Wellness, has done the same in our walk-in Wellness Center, and Diana DiMeglio, our fitness coordinator, has expanded the fitness and swimming regimens to include more movement-oriented exercises.”
Meanwhile Richard and Jeff were able to construct their own haven – literally. “The basic bones of the villa we bought were great…light and bright, wide halls, and no threshold access from the back patio, garage and front walk for the wheelchair,” said Richard. “Two issues we needed to address were trip-and-fall dangers and the decline in Jeff’s vision – the confusion between figure and ground that is common with Parkinson’s.”
The pair designed and installed a custom kitchen with special sink and oven at wheelchair height. The bathroom has built-in seating and grab bars throughout. The living, dining, bedroom, and office are elegantly but selectively furnished to reduce clutter and dangerous obstructions. The cherry on top is Astro the robot, who roams freely to keep an “eye” (a display screen with camera and microphone) on Jeff, allowing Richard to communicate with him when he’s away from home, and reminding Jeff of his medication schedule.
Richard and Christy agree that more can and should be done to accommodate people living with Parkinson’s. Christy is researching outside providers to bring Parkinson-specific dementia care and physical and speech therapy onto campus. Meanwhile, Richard has organized a caregiver’s support group, now in its second year under the leadership of fellow resident Dr. Vick Kelly, which turned out to be so successful that all caregivers in the community are invited to participate.
“Throughout the U.S. we need to realize that the incidence of Parkinson’s is only growing and that we need to prepare,” Richard said. “I am fortunate. I spent my career in social work, I could navigate the healthcare system, and I have the support of Christy and all of Beaumont behind me to enable me to do the most important thing for Jeff: provide a place of hope and optimism.”
