For 67-year-old Joe Fabiano, every morning is the same. After helping his wife, Anita, also 67, out of bed, he helps her bathe and dress, then guides her through their home of 45 years to the kitchen.
“This way, just turn to the right,” Joe tells Anita, holding her hands as she walks.
Anita, who was diagnosed with early onset Alzheimer’s in 2008, is now in the middle stage of the disease. She has problems finding the bathroom, kitchen and front door, even though the layout of their Staten Island home has never changed.
“Small amount today, just six,” says Joe as he hands Anita her pills. After making sure she swallows three at a time, he moves on to breakfast, a simple one of New York bagels. Even though the bagel is sitting in front of her, she waits for Joe to cue her to eat.
“Two hands,” he tells her as he hands her the bagel. “Two hands for what?” asks Anita. “For the bagel,” answers Joe. “Now what?” asks Anita. “Bite away,” Joe tells her.
Anita stopped working within six months of her diagnosis, and Joe took early retirement to stay home to care for her. At first, they were able to get out and do things they both enjoyed, like singing in “The Unforgettable’ s Chorus,” a choir for Alzheimer’s patients and their caregivers started by Mary Mittelman, an NYU School of Medicine research professor.
“When I started the chorus the only requirement was a close friend or family member had to be present at all of the rehearsals and concerts in order to participate,” says Mittelman. “What that meant was that the caregivers developed a social network, which is the key ingredient in maintaining the well-being not only of the caregiver but of the person with dementia.”
That was certainly true for Joe. “We’ve made friends there,” he says. “I especially liked talking to the other man that was coming —we’d share the things that are going on with our lives, and you know you’re not alone.”
“He had the same issues as I did,” Joe adds. “He would help his wife get dressed, he would lay out the clothes, he would help her put on the clothes, and then you have bathroom situations. For a man to suddenly become a caregiver [rather] than a receiver of care is really so different.”
But as Anita’s Alzheimer’s has progressed, it’s harder for her to learn and sing the songs. She’s begun to balk at going to the choir, leading to a weekly repeat of this conversation:
“You go, go, go.” says Anita with a laugh. “I’ll stay home, home, home.”
“You can’t stay home, you know that,” answers Joe. “You may just open the door and walk out. I’ll come back and you won’t be here.”
“I’m not going,” insists Anita, still with a laugh. “No, you are going,” says Joe, with a sigh.
“Caregiving has been shown by many research studies to be extremely stressful,” says Mittelman. “To have impact on the physical and mental health of the family member. In fact, the latest figures put out by the Alzheimer’s Association show health care costs for caregivers (are) approaching $10 billion a year in the United States.”
Enter the NYU Family-Spouse Caregiver Intervention Project. It’s based on nearly 20 years of data gathered from a randomly controlled study of caregivers. Mittelman started the study in 1987 with funding from the National Institutes of Health.
“We compared those who got the NYU intervention to those who got the usual care,” Mittelman says, “and we proved the benefit of providing support for the caregiver, particularly the spouse and partner. They were less depressed and had more healthy behaviors.”
“Most importantly, we found social support, largely from family members, was what made it possible for a spouse or partner to keep the person with dementia at home about a year and a half longer than people who received usual care,” adds Mittelman.
That can greatly reduce the cost of care. Mittelman points out that in Minnesota, one of 11 states that have implemented the program in various areas and the longest running program, a follow-up study showed “the state of Minnesota could save $996 million in a 15-year period if every caregiver of a person with dementia received the NYU caregiver intervention.”
Joe is hoping the program can help him keep Anita at home as long as possible. “Even though Anita says put me away,” says Joe sadly. “She’s always saying put me in a home, and I say you are in a home.”
But he admits that it’s hard for him to ask for help. “I’m nervous about that,” says Joe. “I’m not one that’s going to be asking for help that easily. I feel that if you know the situation, you should be offering me help.”
“There’s often a feeling among caregivers that people should know what I need, I shouldn’t have to ask them,” says Cynthia Epstein-Smith, a lead counselor for the NYU program and co-author with Mittelman of the book “Counseling the Alzheimer’s Caregiver.”
“I think that’s one of the really strong points of the intervention,” adds Smith. “We really try to help people be OK with asking for help, and in a way that people can respond to.”
For Joe there are two immediate needs: some time alone now and again, and help with the “bathroom situation.” As with many Alzheimer’s patients in middle-stage, Anita has become uneasy with the bathing process.
“I know Joe is starting to struggle with personal care issues,” says Smith. “Anita’s resistance is totally expected. This is a kind of experience that people with dementia find uncomfortable.”
There are four components to the NYU program: two individual counseling sessions with the caregiver to identify his or her specific needs, four family counseling sessions, participation by caregivers in weekly support groups, and the opportunity for any family member to use “ad-hoc” counseling via phone or in-person over the entire course of the disease.
“The NYU caregiver program has traditionally been delivered in person,” says Mittelman, “but we are now about to start a study in which we will be offering the intervention using video conferencing techniques so that people can take advantage of its benefits without leaving home.”
Mittelman says that once online training is available, it means counselors anywhere in the world could learn how to do the NYU caregiver intervention.
“The online counseling will be especially useful in connecting people to their family members,” adds Mittelman. “So very often if a family member doesn’t live nearby, he or she isn’t aware of the current status of their loved one and how to help.”
“It’s such a heartbreaking disease,” says Smith. “Does every change break your heart? Yeah. There’s no cure for that. But there is a support for it. You can come through it and there is help.”