As the number of people diagnosed with Alzheimer's continues to grow, those in the field are continually trying to come up with new and better ways to serve this community. Instead of using a rigid, institutionalized setting, adult day programs are being created and tweaked to try new methods of reaching people.
Cold Spring Hills in Woodbury, for instance, next year will start one of Long Island's only adult evening programs. Having already run a successful day program, the new addition, which will take off where the day program ends and last until 8:30 p.m., is intended to address the needs of sundowning patients. Sundowning is when dementia patients become agitated during the late afternoon and evening hours.
Many adult day programs, such as the Memory Lane Club at the Long Island Alzheimer's Foundation in Port Washington, use art, music or pet therapy. Others use massage or acupuncture.
"People with the disease continue to be stimulated and enlivened by music and expressions of art right up until the end," said Rosemary Irving, head of African-American outreach for the New York City chapter of the Alzheimer's Association. "And they also continue to be enlivened by expressions of affection and touching and different kinds of ways of relating and I think that can be very enriching for family members as well as keeping the person with the disease engaged."
The following are three innovative adult day programs in the area:
In a dimly lit room at the Broadlawn Manor adult day program in Amityville, a sound machine plays the calming notes of ocean waves crashing against the shore. Ten members of the program sit around a table as a diffuser spreads the scent of lavender oil throughout the room.
Essential oils have long been known to hold healing powers but certified activity director Danielle Maers doesn't give a lecture on the benefits of the oils - this group is far too cognitively impaired to understand. Instead, she walks around and offers to have the participants smell the scents, holding it under their noses and asking if they like her perfume. If they are agreeable, she'll rub the oils on their pulse points, such as their wrists or behind their ears.
"Clara, smell this perfume that I have," she offers to an elderly woman clutching a baby doll. "It's nice, do you like it? Would you like some on your wrists?"
The woman quietly answers yes and Maers puts on some latex gloves and puts the oil on the woman. The woman never looks away from the doll but a smile forms on her face. She is calm now but the woman frequently becomes agitated, Maers said, asking to go home and to see her son, who takes care of her. The oils help, Maers said, and at times the results are quite dramatic.
Wanderers remain in their seats. Angry participants remain calm after a few drops of lavender behind the ears. "It's not 100 percent but most of the time, it's very effective," she said.
Kathy Behan, director of adult day services at Broadlawn, has been incorporating essential oils into the adult day program for six years. She became a convert after she began using them on her husband, Jim, who had ALS. After using the oils, Jim came off 14 medications and his physical condition improved dramatically, she said. Behan, who is a Type I diabetic, even began using the oils herself and has seen her use of insulin drop significantly since she started.
Behan said the oils are absorbed through the skin in seconds and are throughout the body in 20 minutes. "The best part of it for me is there are no negative side effects," Behan, a registered nurse, said. "I have yet to have a patient have any adverse effects."
The use of oils for healing purposes goes back thousands of years but it wasn't until the 1930s that scientists began actually testing oils' medicinal qualities. Because essential oils are natural, Behan said, they cannot be patented and there are no clinical trials on them, unlike prescription drugs. But, she said, pharmaceutical companies sometimes use the oils in their drugs, and the oils are used medicinally by physicians in Europe.
At Broadlawn, Behan said she has seen some "dramatic" changes using the oils. "I have seen some unbelievable effects on people who traditional medicine has given up on," she said.
She said she has witnessed patients go from using psychotropic drugs to not using any at all. One man was on high doses of Vicodin but now uses only a blend of oils for pain relief. Another man was suffering from nausea but after a few drops of peppermint oil, he was eating a full breakfast.
"It's everyday stuff that can make such a difference just to incorporate them," she said of the oils.
Behan predicts the use of more holistic treatments will increase as the baby boomer generation ages. "The natural industry is growing," Behan said. "Baby boomers don't want medications, they don't want the side effects, they want more natural things."
It's a Thursday morning and Paulette Michaud is her usual energetic self as she picks up a marker and begins writing on white poster paper. Her dozen charges, all with some form of cognitive impairment, are still holding onto their coffee cups and noshing on bagels, as they look up at her expectantly. Michaud draws a hot-pink diamond and announces that they will be doing complex sentences, starting with a two-letter word then building to seven letters before bringing it back down to two again to make a complete, coherent sentence.
At first the group jokes around but they soon settle into a quiet seriousness, some drawing their own diamonds on notepads as they search their brain. Words are shouted out at random, some the wrong number of letters, some inappropriate for the sentence they're building. Other words Michaud herself is unfamiliar with until she looks them up in a dictionary. By the time they near the end of the sentence, the group is stumped. Suddenly, a woman who had not been participating much quietly offers up the last three words of the sentence, drawing a round of applause from the room.
"You guys aced that!" Michaud says enthusiastically as she moves onto an exercise that will force the group to use a different part of their brain.
The group is taking part in MemoryWorks, a brain stimulation program for those with mild cognitive impairment (MCI) and early-stage dementia that Michaud started at the New York City chapter of the Alzheimer's Association nearly two years ago.
"The thing that we do know is that exercising the brain and keeping the blood flowing, you're not going to go wrong," Michaud said. "I'm not going to make all of these claims that we're not certain about in terms of how much good it does. But we do know that it certainly does good."
Participants said the brain exercises also provide a self-esteem boost.
"I still have a mind and here I feel like I'm joining, in, I'm competing with my peers," said Carl Eden, 70, of Jackson Heights. "It's kind of a shot in the arm. When you leave here you feel better about yourself."
Keeping his brain as active as he does his body when he bikes around the city helps keep him motivated, said Jason Marder, 66, of Manhattan, which in turn gives him a fresh outlook on life and his disease.
"It's a camaraderie," Marder said. "We're all in the same situation. We don't think about that situation much but we understand it and because we're all in this together, it gives us the strength to go on."
Michaud said her inspiration for the group was Alana Rosenstein's early stage group at the Long Island Alzheimer's Foundation in Port Washington. She said in the past, dementia clients were always in their 70s or older. But in recent years, she said, the association has begun seeing patients in their 50s and 60s.
"Dementia's horrible, I don't care what stage of your life or what age you are," she said. "But I didn't see the fight in those people that I see in my current clients who are all much younger. They do not see themselves as, 'Well, I'm retired, I'm in the golden years and I'm supposed to sit in a chair.' That could not be further from their views of themselves."
Instead, these dementia patients are trying to fight back, to remain active and work their brains as much as possible. And being among others with cognitive problems helps takes the pressure off, they said.
"It's OK if we all say something or if we don't say anything," said Myrna King, 79, of Manhattan. "To be in this environment and be among our peers, we feel like we're OK as opposed to apologizing to others for not being able to focus or understand or remember."
Michaud said programs such as this are rare for this bracket of dementia patients and as a result, when their abilities do begin to decline and they are no longer able to keep up in the group, there are few places for them to go.
"Most people who transition out of MemoryWorks are not at the stage where an adult day care center is for them," Michaud said. "They are still too insightful. Their self-esteem, their view of the world is still far too highly attuned to put them in an adult day center where people are in the moderate stages."
The group doesn't really get into deep discussion about their declining cognition, Marder said. "We're trying to just push through it and not dwell on it because that doesn't help anything."
"We have stopped our early stage support group because a number of people who were in MemoryWorks were in the support group and they didn't want to talk any more in group," Michaud said. "They don't want to spend time focusing on the negatives. They know what's coming, they know that they're having a difficult time. They don't want to dwell on it."
Let's Do Lunch
It's a Friday afternoon and in an upstairs area at the Sid Jacobson Jewish Community Center in East Hills, a group of individuals are hard at work putting together a mailing about the center's adult programs.
Brian Kammerer, 51, of Massapequa Park, is fastidiously stuffing envelopes, almost robotic in performing his task. Always a perfectionist, before he seals the envelopes he checks each one to make sure all of the necessary components are inside.
Kammerer displayed this same work ethic when he was chief operating officer of a large Wall Street firm a decade ago. That was before he was diagnosed with early onset Alzheimer's at age 42.
Now Kammerer spends several days a week at the center, taking part in their Let's Do Lunch program, a physical, mental and social stimulation day program for dementia patients under 60 years old.
The group of about 20 people perform vocational work, play word games, walk the track and take part in music and art therapy. Unlike the other day program at the center, Friendship Circle, which is geared toward older dementia patients, Let's Do Lunch celebrates the interests and energy level of baby boomers. Instead of listening to Frank Sinatra or Jimmy Dorsey, this group listens to the Beatles or Led Zeppelin. Instead of doing simple seat exercises, these participants play basketball, dance and do aerobics.
"These are people of a different generation," said Connie Wasserman, program director for senior services. "It's so vital to young people who are physically still vital and energetic, you need activities geared toward them."
Let's Do Lunch meets four days a week from 9 a.m. to 3 p.m. and costs $60 a day. The program was inspired by Mike Henley, of Westbury who was diagnosed with early onset Alzheimer's at age 36. Forced into the role of sole breadwinner after Mike was fired, his wife Karen called up Wasserman three years later in a desperate plea to accept Mike into her adult day program. Mike was home all day, frustrated and depressed over not working, she told Wasserman, but none of the other day programs would take him because of his age.
"We tried our very best to help them in any way we could but the truth is a 39-year old man does not fit into a program with people in their 70s, and 80s and 90s," Wasserman said. But then she began to receive more calls from those seeking services for early onset patients and she began to put together Let's Do Lunch.
Wasserman said that since Alzheimer's is often thought of as a disease exclusively for the elderly - five to 10 percent of all cases of Alzheimer's are in those under 65 years old - those who are younger "have sort of been lost."
"It helps the clients feel like they are still productive and can give back to society," Wasserman said of her program. "With retired people, they chose to retire. With a younger person in their 40s or 50s, they were forced to leave the workforce."
The success of the program, coupled with an increased need prompted Wasserman to start Let's Do Dinner, a support group for early onset caregivers and Let's Do Pizza, a program for the children of early onset patients.
The challenge with all of the Let's Do Programs is funding, Wasserman said. Unlike programs for older individuals, which often receive grants through the federal Older Americans Act, programs for early onset clients rely on private donations.
"We beg and we beg," Wasserman said. "And through the generosity of people we have been able to run the program. We do charge a fee but we also provide financial aid for more than 75 percent of the fees because this is not a population that can afford to pay."
Early onset families are often under a tremendous financial strain, she said. Many patients are fired from their jobs, ineligible for benefits and depressed over not being able to work or help out at home. Many of these families have young children, she said, and the spouse must continually work to support them.
"It is a devastating illness at any age but when it affects the younger families it's a tragic illness," Wasserman said. With so few resources available to this group, she said, programs such as hers, which she said is the only one on Long Island, become essential to both patient and caregiver.
"For spouses being able to work and know their husband or wife is in a safe, stimulating environment - I don't think there's anything money can buy that would give them that peace of mind," she said.
For the patient, being able to get dressed each day and go out with a sense of purpose can be an enormous boost.
"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel," Wasserman said. "They leave here with a feeling of something good, a belonging, feeling productive, empowered, respected."