Greg Schwartz (left) and Nancy Schwartz (right).
Reminder Publishing submitted photo
NORTHAMPTON — A cutting edge program that is free to the public and offered by Massachusetts General Brigham Cooley Dickinson is changing the way society supports older adults with dementia and their caretakers.
Started in 2020 by Rebecca Starr, Cooley Dickinson’s first medical director of geriatrics and Laura Hummel, a specialist in geriatric care from Cooley Dickinson VNA and Hospice, the Pioneer Valley Memory Care Initiative aims to combat isolation and helplessness caused by Alzheimer’s and the many forms of dementia by meeting residents where they are at.
As someone who has spent a lot of time working with people in this realm, Starr said she was heartbroken by the fact that people with dementia and their caretakers are often left alone having to navigate the disease.
“I was always struck by the fact that it wasn’t just the person who had dementia that was affected, but it was there family as well,” said Starr, who serves as the program’s medical director.
Considered one of the biggest health challenges of our time, Alzheimer’s and dementia affects more than 55 million people worldwide, according to a 2024 Alzheimer’s Disease Facts and Figures guide provided to Reminder Publishing.
Because there is no proven way to prevent Alzheimer’s disease, or a cure to solve the problem, research centers across the globe have made it a top priority to better manage Alzheimer’s and other dementias. That type of commitment has trickled down locally to Cooley Dickinson.
Starr and Hummel found that there was a lot of isolation and shame that shrouded those who experienced dementia or Alzheimer’s disease as well as a lack of community and group support.
“I can give a diagnosis, but there’s so much more that needs to be done to offer support,” Starr said.
Using a seed grant, Starr and Hummel implemented the PVMCI, a community-based program that collaborates with partners like the Northampton Neighbors and Alzheimer’s Association to support older adults living with dementia and their family caregivers using individualized care plans that incorporate those service partners.
“Socialization is one of the biggest things we can do to support people living with memory loss, and we can basically work with the neighborhood organizations to make sure that happens,” said nurse Karen Romanowski, the lead memory care specialist and volunteer coordinator for the program.
The program, which serves those living in the Amherst, Easthampton, and Northampton area, is mainly focused on those adults and their caregivers that are living at home in the community dealing with those challenges of isolation and helplessness.
“There are programs around the country, but we are in the community with our boots on the ground,” said Sharon Asher, the program manager of PVMCI. “We meet the person where they live so we know their environment.”
How it works
A person diagnosed with dementia, Alzheimer’s, or some other form of memory loss is referred, with their caregiver, to the PVMCI program by Cooley’s Geriatrics department. Once they are referred, they are paired with one of the program’s three memory care specialists, where they will go over logistics for future planning and other standard protocols.
After going through that, the person and their caregiver is offered an opportunity to be paired with a volunteer from one of the partnering organizations or with another family.
“As memory care specialists, one of the things we do is find out who the person is and who the person has been, as well as their care partner,” Romanowski said. “We have a lovely ability to then find volunteers who have really similar interests and can really draw upon the person’s past and present and really connect them socially.”
The frequency in which volunteers meet with the people they are paired with in the program, and how they spend their time with the family, varies based on the personal needs and interests of the adult living with memory loss and their caregiver.
One person in the program, for example, used to be an art professor, so they meet intermittently with their volunteer to go on art museum outings as a way to draw upon the person’s past. Some volunteers, meanwhile, help with things like memory cafes and other administrative tasks.
The program’s personal impact
In 2007, Greg Schwartz was a 51-year-old healthy and active man who served as the executive director of a small nonprofit in Holyoke that offered youth programming and opportunities to learn about financial literacy.
While part of the nonprofit, Schwartz, an Amherst resident, said he spent his time teaching entrepreneurship to daycare providers until his life changed.
Schwartz experienced a random stroke one night that forced him to the emergency room and weeks of rehab. Although he encountered some improvements within the first 12 hours of having the stroke, Schwartz sustained frontal lobe damage and loss of use of his left arm and hand.
The experience forced Schwartz out of his job, and for the last 16-plus years, he has been dealing with the lasting effects of that stroke, including cognitive loss and an impairment of his executive functions, which are mental processes that help humans set and carry out goals.
“I think the cognitive loss is such an important piece,” said Nancy Schwartz, Greg’s longtime wife and caretaker, in her Amherst home. “He feels it every day.”
A self-employed architectural designer, Nancy has been by Greg’s side through this entire journey and has used her experience in her profession to help with certain modifications to the house to assist him physically, like asking builders she knew to construct a ramp for Greg’s wheelchair.
Greg and Nancy have also continuously had help from physical therapists, trainers, and loved ones, like their two children, over the years.
“We run like a well-oiled machine here,” Nancy said. “I know exactly how to assist him physically.”
The presence of COVID-19, however, provided less opportunity to socialize with people which meant Greg was becoming more isolated at home. On top of that, the effects of Greg’s frontal lobe damage were magnified as he aged, meaning it was becoming more difficult for him to process reasoning, logistics or rationalization despite maintaining a great long-term memory.
“We were at a stage in our life where we were the only ones dealing with something like this,” Nancy said.
Greg and Nancy stumbled upon the PVMCI several months ago thanks to help from Starr and Dhruv Jani, a doctor at Cooley’s Geriatrics office. The couple spoke individually and together with Jani for over an hour-and-a-half to learn more about the program.
“We learned that the program was a great way to get him connected to the community,” Nancy said.
Nancy and Greg were paired with Romanowski, who then connected them with Nina Korza, a volunteer for the program and a member of Amherst Neighbors.
“I came in with no history of knowing Greg or his family,” Korza said. “Despite that, we clicked right away.”
Corza, Greg and Nancy’s dynamic embodies how effective a program like this can be for those who struggle with cognitive loss. Corza meets with Greg every Friday to chat and play any number of his favorite board games like Scrabble, Banana Grams, card games and Monopoly.
Most Fridays, Greg will tell stories about his days running a greenhouse business with Nancy for 20 years, or how he is a big fan of riding boats with his family, or how he would go door-to-door selling Fuller Brush cleaning products when he was younger, just like Jeopardy’s Paul Newman.
“One thing I learned from Jeopardy is Paul Newman and I have a lot in common,” Greg said with a smile.
Greg’s penchant for storytelling is able to unlock his personality and gives Korza an understanding of what his interests are and how those interests have shaped him as a person.
“It’s great, great dialogue,” Korza said. “I just listen to whatever he’s going through and then maybe ask a question, and that can open up another avenue. It’s really good way to create a nice visit.”
The program in general has also allowed Nancy to balance her life in a way where she can be there for Greg and spend a lot of time with him but also take some time for herself.
“No couples are meant to be together 24/7, even in the best of circumstances,” Romanowski said. “The program allows Nancy to have other ways of having support.”
By being a part of Nancy and Greg’s life, Korza is essentially offering another outlet for socialization; a way to break free from that looming isolation that many adults with dementia and their caregiver’s face.
“I feel like she’s part of the family now, and it’s only been a short period of time,” Nancy said, when speaking on Korza.
It’s been wonderful,” Greg added. “I look forward to my Fridays.”
The program’s volunteers and future
Currently, Greg and Nancy are one of 15 families paired with a volunteer in the program, according to Romanowski.
As the need for the program increases, though, those who spearhead it are continuing to look for more volunteers, especially since there are 20 to 25 people who are on a wait list for a volunteer, as of press time.
Those who are interested in volunteering will usually go through a training process with their neighborhood organization before going to a general informational Zoom session about the PVMCI.
The volunteers do not have to have experience working in the memory loss realm.
“We are out and about in the community doing a bunch of talks looking for anyone who wants to volunteer,” Romanowski said.
The ultimate hope with this program is to simultaneously offer the support that people and their caregivers need while also reducing the stigma of dementia by doing things like teaching people how to communicate with someone who has memory loss while also providing an outlet for families to have those difficult conversations about the challenges.
“I think some people aren’t sure what to say around somebody who have dementia or what to do,” Romanowski said. “We’re here to really support them through that and to train them and to make sure that they have the tools to do it well and to feel comfortable.”
According to Romanowski, the program in all its facets will play a crucial role in the community, especially as our population continues to age. She told Reminder Publishing that she hopes more people talk about memory loss because it is among us, and it will continue to be among us.
“It’s all over the news, we are an aging population,” Romanowski said. “As we age, more people tend to get memory loss, the older they get, and it’s going to be a part of our society forever. I think Dr. Starr and the folks who got this program rolling saw that trend coming a little sooner.”
Readers can learn more about the program by visiting the Cooley Dickinson website: https://www.cooleydickinson.org/programs-services/geriatrics/pioneer-valley-memory-care-initiative/. The program is funded by The Eisenberg Family Trust and in part by a grant from Highland Valley Elder Services through funding under the Federal Older Americans Act.
