Memory care living: What to know about costs, options, facilities

As soon as a memory support "neighborhood" opened in Jefferson's Ferry Life Plan Community in South Setauket, Megs Shea, 88, moved right in.

"She started with independent living and then went to assisted living," said her daughter Nancy Shea, 57, whose mother has Alzheimer's disease. "When they finished the new facility, she was eligible to go in there."

The Grove, a 20-bed unit that opened in July, is the latest part of Jefferson's Ferry Life Plan Community, which includes independent living, assisted living and skilled nursing on the same campus.

"We would have to have 24-hour care, which is expensive. And she would be isolated," Shea said, adding, "My mom was always social, so I think just being around people is better for her versus if she had caregivers that came in and out and just interacting with one person."

Like the rest of the country, Long Island's population is getting older: an outgrowth of the aging baby boom generation and the declining birthrate. Megs Shea is one of the many older Long Islanders also living with memory issues. As the population ages, more people will be diagnosed with dementia and/or Alzheimer's and require memory care services either at home or in a group living facility.

Memory care at The Grove

Before establishing The Grove, which has 20 residents, Jefferson's Ferry offered a memory support unit in its nursing facility, which is a much more restrictive and medically intensive environment.

"In our assisted living, we were seeing significantly more residents with dementia or memory issues," said Anthony Comerford, vice president of health services at Jefferson's Ferry.

A ground floor "neighborhood," The Grove is set up in a circular pattern so residents experience more of a homelike environment. They have access to an enclosed courtyard and can participate in cooking classes in the open kitchen and other small group programming.

"The goal is not to have residents run into a dead end or a door at the end of the hallway, where they don't know where to go at that point," Comerford said. "The goal is to keep residents outside of their rooms."

Run by certified dementia care practitioners, The Grove offers intensive therapeutic programming that includes aromatherapy, virtual reality — where residents can "visit" different parts of the world — music and art programs and pet therapy.

"I love their philosophy of everything's kind of in a circle and trying to keep them out of their rooms as much as possible so that they have more interaction with people," Shea said.

There is no way for Megs to live at home at this point in her life, said Nancy, an event planner/gourmet chef who lives in Bozeman, Montana. Living across the country, she manages to catch up with her mother via monthly video calls.

Nancy added that her mom always loved to cook, so she appreciates that her mother can help out in the kitchen. "It seems to me like her agitation is down a bit since being there and I would attribute it to being a better environment for her."

She likes to talk, so she has constant socialization, which is nice. That's something you wouldn't get if you were staying at home.

— Donna DeFilippi

After spending two years in Jefferson's Ferry's assisted living unit, Pam DeFilippi, 89, also moved into The Grove when it opened.

"She's never been officially diagnosed with any specific form of dementia: She just has dementia," said her daughter Donna DeFilippi, 61, a nurse, who lives in Smithtown.

Since her mom moved into The Grove, she's been doing better, her daughter said.

"When she first got there, if they had arts and crafts, she would help clean up," DeFilippi said. "She was always helping. She was a nurse as well: She sees the people in scrubs and she sees them as colleagues, as opposed to caretakers."

DeFilippi is relieved to know that her mom is being well cared for in a safe environment.

"She likes to talk, so she has constant socialization, which is nice," DeFilippi said. "That's something you wouldn't get if you were staying at home."

Reflections at The Bristal

Most of The Bristal's 16 assisted living communities on Long Island, which are from North Woodmere to Mount Sinai, have a "Reflections" self-contained memory care unit, noted Mark Paretti, vice president of resident experience, memory care and programming for Bristal Assisted Living Communities.

"It's usually a smaller neighborhood, if you will, within the overall community," Paretti said.

In the average Bristal community, there are about 100 to 200 residents, of which about 80 to 150 are in assisted living and 25 to 60 live in the Reflections memory care neighborhood.

"It's built in a way that supports the needs of somebody living with memory loss," Paretti said. "And one of the things that tends to work better to support a resident with memory loss is a smaller overall environment."

People can either move directly into the memory care neighborhood or start out in assisted living and move to memory care if necessary. One advantage to having Reflections right in the same facility, Paretti said, is it makes it easier for spouses or loved ones to visit each other.

"They're right there, so you can be with them at any point during the day or have them join them potentially for some of the day if you're in assisted living," Paretti said.

Everything in the Reflections unit mirrors what's in the assisted living section, such as dining and programs like entertainers, lecturers, and arts and culture-based activities, but with a little more support, including increased staff, personalized daily routines and therapeutic activities, noted Paretti.

When her husband died in October 2023, Josephine Leonidis, now 96, had been living in her East Meadow home for 40 years, said son Ron Savastano.

At first, they tried to have an aide come to the house, but found it was expensive and Josephine needed more socialization. Soon after having open-heart surgery at age 89, Leonidis began suffering from dementia, Savastano said, attributing it to her advancing age.

"When she was with her husband, they would go to the mall. On Wednesday, they'd go to the movies for a 1 o'clock show," said Savastano, 64, who owns an alarm system company. "They always were active doing things and staying at home, she would sit on the couch talking to an aide. But how long can you do that?"

In May 2024, Leonidis moved into The Bristal in Lake Grove, somewhat of a midpoint between his Muttontown home and his sister's Southold residence.

"My sister's there at least once a week. I'm still running a business, so I try to get there every two weeks," Savastano said. "She doesn't know my name, but she certainly knows my face and she gets very happy when she sees everybody."

Though his mom loved being in her home, Savastano said that because she's lost a lot of her memory, "she kind of forgot where home is, so this is her home. And every day's a new day."

Savastano is relieved to have his mother at the Bristal, where she particularly enjoys music therapy.

"I can't really say how she sees it, but for me going there, it's a breath of fresh air because I know my mom is being taken care of," Savastano said, adding, "They're active all day long, which is important."

Staying at home

A 2023 Harvard University Joint Center For Housing Studies study found that in 2021, 88.2% of older adults lived in their own home; 9.3% lived in someone else's home — most frequently that of an adult child — and the remaining 2.5% resided in group settings, such as nursing homes and assisted living facilities.

Staying in the familiar surroundings of one's home can be integral to the treatment of people with dementia, said Jennifer Benjamin, owner of Family First Home Companions, based in Islandia.

"They need familiarity," Benjamin said. "They're comfortable. They know where things are. Taking them out of that environment is very disorienting and upsetting for them."

Companies like Family First Home Companions are frequently the first steppingstone for people that are just starting to need help with their daily lives, Benjamin said.

"Often it is due to a cognitive impairment or they have suffered an injury, a fall, and things have changed and they need that support at home," she said.

Family First offers hourly, overnight and 24/7 live-in care services.

"It can be anywhere as little as two days a week having a caregiver come in for just four or five hours a day up to that 24/7, around-the-clock care," Benjamin said.

The focus for Family First is on companion care, not nursing services.

About 95% of their clients have memory issues, ranging from mild to moderate and severe situations where the person wouldn't, without a caregiver, be able to manage daily living routines, like getting up, having meals, practicing personal hygiene and keeping a calendar.

In some cases, these seniors who stay home are also cared for by their children or spouses, who might need some respite for work, errands or appointments.

While training at Family First, caregivers are given activity booklets for people with dementia, which involve memory games, trivia, showing photos of famous people from their generation and word games.

"Oftentimes that is what the families are requesting," Benjamin said. "They want activities, stimulation, walks, games, to keep that person engaged. Often, we're contacted by the family members, normally the adult children, who reach out to us because they themselves have been doing the caretaking and now they just can't continue to cover all the hours. So, we're supplementing that."

Paying for care

As the expenditure for memory care services can be rather steep, it's advisable to plan ahead, if possible.

In addition to long-term care policies, which should be acquired when you're in your 50s, people should consider asset protection, advised Jennifer Cona, founder and managing partner of Cona Elder Law, headquartered in Melville.

"You want to look at an asset protection trust, which is an irrevocable trust," said Cona, noting that the trust — which can include your home and other assets — must be established at least five years before the health care is needed.

Typically, people moving into an assisted living or Continuing Care Retirement Community (CCRC) pay the entrance fee outright.

"The idea is you would sell your house and use the entire proceeds to buy in and then use your Social Security, pension, IRA income to pay that monthly nut," Cona said.

If you still can't afford assisted living or other care, other possibilities are working with financial advisers, reverse mortgage professionals and, if necessary, applying for Medicaid, which entails having no assets.

Cona recommends meeting with an elder care attorney to discuss the options, as far in advance as possible and definitely before there's an urgent need for services.