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Groups treating Alzheimer's, dementia patients try to retool services

Margie Licata, of East Meadow, has no structured setting to take husband Joe to since the closure of the Long Island Alzheimer’s & Dementia Center in Westbury as a result of the coronavirus pandemic. Credit: Newsday / Alejandra Villa Loarca

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Organizations across Long Island that serve those with dementia and their caregivers are racing to transition the services they typically provide in person to other formats so they can reach people in their homes during the COVID-19 crisis.

With group programming shut down, family caregivers are now facing a new level of stress. Programs for dementia patients provide them with socialization and allow caregivers some respite. Those caregivers also rely on support groups run by the organizations.

Other forms of assistance, such as home health aides and visits from family members, may also have been scaled back, and caregivers now find themselves in a “new normal,” said Robin Marks, executive director of the Bay Shore-based Alzheimer’s Disease Resource Center.

“A lot of people who are dealing with their loved ones, even if they have been the primary caregiver, haven’t been doing it 24/7,” Marks said.

Others have made note of the challenge too.

“For them to be almost stripped away of these things in this time so quickly is devastating,” said Tori Cohen, executive director of the Long Island Alzheimer's & Dementia Center in Westbury.

Cassandra Tavella, a licensed geriatric social worker for the resource center in Bay Shore, said the loss of programs means the loss of socialization, which is crucial for dementia patients.

“Now that all of those programs are off the table, these people living with dementia are quite literally trapped in their own minds being at home,” she said. “I know it’s a harsh word, but I consider it torture.”

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Both centers, as well as other organizations such as the Long Island chapter of the Alzheimer’s Association and the Alzheimer’s Foundation of America, are helping both caregiver and patient by putting activities such as word games and chair exercise classes online through Facebook Live or setting up conference call support sessions.

“We are evolving daily to keep meeting the needs of the people who are counting on us,” Marks said, adding that she is looking for a bilingual interpreter to reach Spanish-speaking caregivers and patients. 

The organizations are making sure to have set activities at certain times to help caregivers provide a sense of structure for their loved ones.

Andrea Kotas, 48, of East Meadow, whose mother, Josepha, 85, attends the center in Bay Shore, said she’s already noticing changes in her mother, who she said doesn’t understand what is happening and is constantly asking about going out.

“That routine is important to her, it’s stability in their world,” she said. “Things are crazy in their world already. When there’s a structure like that it’s something they can hold on to.”

For caregivers, the loss of services has also meant less free time for themselves and the ability to recharge from the stress of taking care of their loved ones. Even the inability to do something like go to the gym or hair salon can impact self-esteem and well-being, Tavella said.

“For caregivers it’s these little activities that keep them going,” she said.

Margie Licata, 73, who cares for her husband, Joe, 78, in their East Meadow home, called the time her husband would spend at the Westbury center “a blessing.”

“I could get things done, and knowing the fact that he was being taken care of really freed me for those four hours,” she said.

Licata would have lunch with her sister, run errands “or just do something for me,” she said. At home she said she must watch her husband all the time to make sure he doesn’t hurt himself.

The activities that are now online have been helpful, Licata said. Recently, a social worker from the center broadcast a singalong and her husband’s face lit up, she said.

“It was like having a friend in your living room,” Licata said. “The things they are putting out there for us make us feel like we’re part of something.”

RESOURCES FOR CAREGIVERS

  • The Alzheimer’s Disease Resource Center has support groups via teleconferencing Monday-Friday from 10 to 11 a.m. and 1 p.m. to 2 p.m., and from 4 p.m. to 5 p.m. for professional caregivers. Dial 425-436-6397 with access code 513432. There will also be activities scheduled on Facebook Live. Contact the center at 631-580-5100.
  • Long Island Alzheimer's & Dementia Center is going to have a Facebook Live activity Monday-Saturday at 10:30 a.m., 12:30 p.m. and 2 p.m. There are support groups on Tuesdays via teleconferencing from 11 a.m.-noon and 1 p.m.-2 p.m. Assistance is available by calling 516-767-6856 Monday-Saturday from 9 a.m. to 5 p.m.
  • The Alzheimer’s Association can offer assistance 24/7 by calling 800-272-3900 and has the following online resources:
  • Caregiver’s forum and message board; alzconnected.org
  • Alzheimer's Library and Resource Center; alz.org/help-support/resources/virtual_library
  • Telephone/Virtual support groups and education programs; communityresourcefinder.org
  • Classes and training; training.alz.org
  • Online tools; alz.org/help-support/resources/online-tools
  • The Alzheimer's Foundation of America has a helpline at 866-232-8484, and all community programming is now online and streaming live on Facebook. Upcoming classes and events, respectively, can be found at alzfdn.org/education-resource-center/ and at https://alzfdn.org/event/

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