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The power of art to unite and soothe is getting a workout in an online program from the Long Island Museum aimed at helping those with Alzheimer's disease or dementia and their caregivers fill their days and exercise their minds.
Music is part of the equation, with streaming of concerts designed to engage and stimulate by performers experienced in working with those with memory loss. From virtual chat sessions to singalongs, chair exercise programs and telephone support groups for care partners, agencies are reaching out to help caregivers who no longer have access to day programs or respite care — but are still tasked with 24/7 caring for their loved one with dementia or Alzheimer's disease.
"It's very hard for our families," said Lori Maldavir, director of program development at Day Haven Adult Day Services, which pre-pandemic has offered daytime care, therapeutic activities and supervision at sites in Port Jefferson, Riverhead and Ronkonkoma. "We’re reaching out in a number of ways, and doing Facebook Live programming so families can create some sort of routine and a schedule. We try to create a variety of therapeutic activities on Facebook."
An estimated 5.8 million Americans age 65 and older are living with Alzheimer's disease, according to statistics from the Alzheimer's Association, an advocacy and support organization. Ninety percent are 75 or older. One in 10 people age 65 and older (10%) has Alzheimer's.
Day Haven offers four Facebook Live programs on weekdays so caregivers can plan around them. Staff also offers support groups via phone or Zoom sessions. "Caregivers really need that support," Maldavir said. "We're all experiencing that isolation, but when you're home caring for someone with dementia, it's magnified. Their need is exacerbated by the isolation."
Long Island Museum's In the Moment: Art Engagement for People with Memory Loss is part of the museum's outreach efforts in what Beth Chiarelli called this "new normal" while its doors are shuttered because of social-distancing restrictions to slow the spread of the COVID-19 virus.
The museum, online at longislandmuseum.org, lists new episodes on its website and emails previously registered memory-program visitors a series of paintings and directed questions that offer a springboard for discussion similar to one of its guided gallery tours. There are no right or wrong answers when discussing the paintings, noted Chiarelli, assistant education director, just an opportunity for participants to engage creatively together.
Sandra Gallof, 72, of Massapequa, used the emailed questions to help her husband Irwin, 74, during a review of the paintings. Both retired in 2015. They enjoyed discussing the images while celebrating their 52nd wedding anniversary.
"I tried to start a little conversation," Sandra said. "We were deciding what season it was and, in the painting of a boy sitting under a tree, what he was doing — was he reading, or eating, or maybe he was fishing? We weren't sure, but we enjoyed talking about it." The untitled landscape by Whitney Hubbard shows a fall scene with a boy sitting under a large tree.
Another painting of a hillside scene by Charles Lenox Wright II from 1937 showed a hillside covered with white, fuzzy plants. "We spent time discussing what kind of plant it was, maybe the ones where you pick up the top and blow on it and make a wish as the seeds scatter?" Sandra said.
Question prompts from the LIM included: what colors do you notice, what season do you think it is and how can you tell and why, and if you stepped into this painting, what would you hear, smell or what could you touch?
Sandra searches for activities that will engage Irwin's interest while they're pretty much confined alone at home because of social distancing rules to prevent spreading the virus. She looks forward to more art-related offerings from LIM. "I don't want any decline. We've been working so hard on things that provide mental stimulation. We do FaceTime with the children, and my son in Smithtown used to come help, but we've lost our family support as well."
Viewing streamed concerts also helps, Sandra said, as Irwin enjoys music as do many with Alzheimer's disease. They've watched musician Steve Cassano's concert, offered through the Making Memories Through the Arts program, shows that are meant to engage and stimulate those with memory loss. "He really gets into it. It's the next best thing," Sandra said, "I could see that he was enjoying it. I'm very thankful for anything we can get virtually. It breaks up the day a bit, otherwise it's really challenging."
Marcy Rhodes, a social worker who runs Making Memories With Music as part of her overall Making Memories Through the Arts programming at the LIM and several other arts centers, is offering on her website streamed concerts by professional musicians who work frequently with the memory-loss community. "The organizations that provide services have really ramped up," Rhodes said. "Once we all realized we were going to be home, the programs developed in a more organized way."
Cassano said he's gotten emails with positive feedback. "Thank you for a bit of normalcy during this time," read one letter, he said, and another viewer sent him a clip of her mother dancing in her chair along with the music. He also streams live Memory Cafes that make participants feel like there's face-to-face contact. "It started as a conversation of 'what can we do.' I have a studio at home, so it was a natural extension," he said.
For Maureen Matthews, 88, of Cold Spring Harbor, and her daughter, Theresa Matthews, 64, of Huntington, a retired teacher, the paintings from the LIM sparked a discussion of colors, seasons and whether a painting by William de Leftwich Dodge titled "Stony Brook Harbor" reminded Maureen of a similar view in upstate Lake George, where she had visited.
Maureen's initial replies were one-word answers, Theresa said, but she mentioned a few details as they continued to discuss the colors and the painting's settings. For the snowy setting in Ernest Lawson's 1910 painting titled "Winter Scene," Maureen, who has dementia, noted it had "few leaves" and "when you walk around outside it's cold."
"When I have her attention she is able to give me some details," Theresa said. But then Maureen tired and lost focus, Theresa said, so they talked about the fourth painting the next day.
She's been trying to keep Maureen's wake-up and bedtime schedules the same, with dinner followed by watching a round of "Jeopardy!" and a later bedtime, but there are still many hours left in the day. "If it's a nice day we go in the car and she's loving that," Theresa said, and Maureen listens to music on her iPod Shuffle while Theresa gardens. "If we go for a long car ride or she gets agitated, she has her music." Theresa said her mother also enjoys watching streaming Making Memories concerts, which they had frequently attended in person at the Cinema Arts Centre in Huntington and the Gold Coast Arts Center in Glen Cove.
The virtual assistance is welcome, Theresa said. The pair previously attended enrichment programs during the week, and a volunteer helped for a few hours. "I don't have my respite time now," Theresa said, although her husband, Ted Donovan, also assists in caring for Maureen.
Creating connections and community fueled the idea to bring the museum's In the Moment gallery tours online. Guided discussion helps foster connections while the open-ended questions spark discussion and memories. Part of the success of the in-house gallery tours is the experience for both the care partner and the participant of seeing the paintings in the museum setting. "The curator guide sparks discussion and moves people away from [reliance on] the caregiver," Chiarelli said. "It gives them a chance to view the exhibit together as a normal social outing."
To jump-start dialogue at home, Chiarelli suggests removing distractions and using a touch object that encourages memories. If there's a couch in a painting, the caregiver could give the participant a piece of velvet to feel, she said, or if there's a flower, they can offer a scent on a cotton ball to awaken their sense of smell. If there's a beach, offer a shell, pebble or some sand to touch.
"The sensory experience helps spark conversation and memories," Chiarelli said. "You often hear incredible stories of people's childhoods. That's our goal, to create the spark for a meaningful conversation."
Tori Cohen, executive director of the Long Island Alzheimer's and Dementia Center, said her organization pivoted quickly and has started doing virtual activities via Facebook to help caregivers and participants, from exercise and singing sessions to chat and brain games, offered on a regular schedule six days a week.
"It's a whole new world. We were using social media to make people aware of our services, now we're using it to offer services," Cohen said. "This might be something that will be a part of our future."
Robin Marks, executive director of the Alzheimer's Disease Resource Center in Bay Shore, concurred. "Imagine if we had to go through this without online support," Marks said. "It's going a very long way to keeping us all connected. I think needs are increasing. The novelty has worn off."
Agencies serving those diagnosed with Alzheimer's disease and dementia offer online daily activity classes and chat sessions, often guided by a familiar face, so participants can join in and add structure to their day. Here's a sampling of resources organizations are offering, ranging from virtual support sessions for caregivers to live Facebook events and instructional webinars.
Alzheimer's Disease Resource Center (ADRCinc.org)
The Alzheimer's Disease Resource Center provides programs and services for people with Alzheimer's disease and for families, direct care professionals and health care professionals. It serves the metropolitan area, including Nassau and Suffolk counties. Its main office is in Bay Shore and it has satellite offices open by appointment in Garden City, Lake Success and Southampton. Check its Facebook page (facebook.com/ADRCInc) for such live activities as bingo and music, and links to telephone support groups. On its homepage, a link in the ARDC Announcements box takes readers to a resource page with a caregiver log, tips for relaxation techniques and more. It also is offering a three-part webinar series, "Keeping It Together While Staying Apart," in May sponsored by The Bristal. For information, call 631-580-5100, ext. 304.
Alzheimer's Foundation of America (alzfdn.org)
This national organization provides support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias. It offers information, caregiver resources and professional training. Its events calendar lists webinars and programming, including community classes on topics from dramatic improv, painting and fitness to an Irish step dance performance and self-care techniques for caregivers, as well as webinars with tips for how caregivers can maintain quality of life and have successful activity interactions.
Its helpline, 866-232-8484, is open seven days a week (9 a.m. to 9 p.m. Monday to Friday, and 9 a.m. to 3 p.m. Saturday and Sunday). Its Facebook page (facebook.com/alzheimersfoundationofamerica) offers weekend activity tips, notices of events and virtual classes.
Day Haven Adult Day Services (dayhaven.org/index.htm)
Day Haven runs adult day services programs at three locations in Suffolk County — Port Jefferson, Ronkonkoma and Riverhead — and has moved several programs online.
Support groups are online for now. Those interested in participating may contact Lori Maldavir (email email@example.com or phone 631-585-2020, ext 261). Check its Facebook page (facebook.com/DayHaven) for live staff-led events, such as exercise sessions, chats and brain teasers.
Long Island Alzheimer's and Dementia Center (lidementia.org)
Formerly the Long Island Alzheimer's Foundation, the organization changed its name in October 2019 to more accurately reflect that it serves those with Alzheimer's disease as well as those with dementia. It offers live, interactive programs three times a day — 10:30 a.m., 12:30 and 2 p.m., except Sunday — on its Facebook page (facebook.com/LongIslandAlzheimersandDementiaCenter) along with virtual Memory Cafés and telephone support groups led by a licensed social worker.
To help build a support network for caregivers of those in the early stages of Alzheimer's disease, there's a weekly virtual meetup session hosted in conjunction with the Alzheimer's Association that meets Wednesdays through June 10.
LIAD also is offering via Zoom a free online three-session caregiver's guide for coping during COVID-19, sharing tools, techniques and knowledge to help manage care. Visit lidementia.org to register for the webinar and receive the Zoom link. Call 516-767-6856 with questions.
Making Memories Through the Arts (makingmemoriesthroughthearts.com)
Although live programs are canceled while gatherings are prohibited, organizer Marcy Rhodes has several Making Memories With Music performances posted to her website. The videos allow participants to sing and clap along as the performers introduce the songs and chat.
Available now on the “Music” section of the site are performances from singer and guitarist Steve Cassano and Roberta Fabiano, a singer-songwriter and lead singer with the Peter Duchin Orchestra. Upcoming performances from folk rocker Stuart Markus with Gathering Time and singer-songwriter-pianist Gail Storm are scheduled to be added in two-week intervals. There's also a Facebook page, facebook.com/makingmemoriesthroughthearts, that lists events.