Caregiver ‘Boot Camp” for Dementia Patients

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Boot camp alzheimer caregiversGary Carmona thought he could do it all. He has headed companies and chaired nonprofit boards. But since his wife was diagnosed with dementia, Gary, 77, has felt exceedingly overwhelmed. 

 

 

“I really see myself crashing at times,” he said. “In my mind, I’m saying, ‘You know, I can’t really handle all this.’”

There was the time his wife, Rochelle, wandered outside and fell down. And the time she boiled water and walked away, leaving the burner on.

“I’m always double-, triple-, quadruple-checking everything that she’s around,” he said.

Carmona was among about 25 people who went to a Los Angeles-area adult day care center on a recent Saturday for a daylong “caregiver boot camp.” In the free session, funded in part by the Archstone Foundation, people caring for patients with Alzheimer’s or another form of dementia learned how to manage stress, make their homes safe and handle difficult patient behaviors. They also learned how to keep their loved ones engaged, with card games, crossword puzzles or music.

Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people in their care. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.

“People with Alzheimer’s who have stressed caregivers have been shown to have poor outcomes,” said Zaldy Tan, the medical director of the UCLA Alzheimer’s and Dementia Care Program who created the boot camp. “Their caregivers have essentially thrown in the towel.”

People with dementia are also more likely to visit the emergency room and be hospitalized if their caregivers are not prepared for the task, Tan said.

That’s one of the main reasons why UCLA Health and its geriatrics division started its caregiver boot camps in 2015.

UCLA holds four boot camps a year at community and senior centers in Southern California and hopes to expand over the next year to meet the growing need. About 5 million Americans, 1 in 10 people over 65, have Alzheimer’s disease — a number that could balloon to 16 million by 2050, according to the Alzheimer’s Association.

Similar caregiver training programs have taken place in New Jersey, Florida and Virginia.

Tan started the recent session by explaining the progression of dementia, noting that in its later stages people often do not remember their loved ones.

“Do they all reach that stage?” asked one woman, who takes care of her sister.

“They do, if they live long enough,” Tan said. “I know it’s heartbreaking.”

He also warned the group that their actions can inadvertently provoke anxiety or aggression in their loved ones.

“Many times, when you see someone shift from being calm to agitated, happy to angry, typically there’s a trigger,” Tan said. “A trigger is just like a trigger on a gun. Something is pushed and you get a reaction.” He told them that as caregivers they were in the best position to identify and avoid those triggers.

Leon Waxman, who also attended the boot camp, said he tries not to upset his wife, Phyllis. But sometimes she gets angry, as she did the day he dropped her off for day care while he attended the session for caregivers.

Taking care of Phyllis the past few years has been trying, he said. She can still dress herself, but she gets easily confused and can no longer make decisions.

“The hardest part for me is I don’t have my wife anymore,” said Waxman, who has been married to Phyllis for 58 years. “She’s not the same person she was 10 years ago.”

During the boot camp, recreational therapist Peggy Anderson demonstrated a game caregivers could play at home: music bingo. Each square had the name of a song, and she played music.

“What’s this song?” Anderson asked the group.

“Bye blackbird,” one yelled out.

“If you have that one, mark it off,” she said.

Anderson said that even people with dementia can sometimes recognize songs and read their titles. “There’s a lot of good things that come out of this activity — just listening to music, clapping your hands, reminiscing,” she said.

In another room, occupational therapist Julie Manton explained how to prevent people with dementia from falling. She advised the group to ensure their homes have good lighting and bed rails, as examples. She also urged them to remove throw rugs.

Manton warned the participants that their loved ones might wander off and suggested the use of monitoring devices. “The key thing is to know where your loved one is at all times,” she said.

 

Awake And Safe All Night Despite Dementia

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In their Manhattan apartment, Josephina is trying to coax her 84-year-old mother, Brunhilda, to get ready to go out. As she does most nights, Josephina makes up a story to get her mother, who has dementia, to cooperate.

In Spanish, Josephina asks her mother if she would rather go to Miami or the Dominican Republic. Her mother says she wants to go to the Dominican Republic, and then Josephina helps her mother gather her things and escorts her downstairs to a waiting van. The driver will take her mother to the Elderserve At Night program at the Hebrew Home At Riverdale in the Bronx. It’s a kind of day camp – but at night, for people like Brunhilda who suffer from Alzheimer’s disease.

Josephina says her mother was once a proud, hard-working immigrant who raised four children on her own, but she has changed. “Her memory has been totally lost. She’s very disoriented,” Josephina says. “She doesn’t communicate at all.”

For months, Brunhilda would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep – afraid her mother might fall and hurt herself or even try to leave the apartment.

“She wanted to sweep the floor. She wanted to watch TV. She wanted to clean the bathroom,” Josephina remembers. “She wanted to go out. This is at one, two o’clock in the morning.”

But now Josephina is finally getting some sleep – and her mother is being well cared for, along with about 40 other people, seven nights a week. Activities may include arts and crafts, cooking, yoga or Zumba, and even live performances. On the night we visited, Juan Ortega played American and Spanish favorites on his synthesizer.

Though it looks like entertainment, each activity has a therapeutic benefit for memory-compromised people, says Deborah Messina, who runs the overnight program. She described a common problem among dementia patients known as “sundowning.” It is thought to affect about 20 percent of Alzheimer’s patients.

“Their day is our night and vice versa, and they are confused about it,” Messina says. “It is usually at dusk where an agitation comes, a confusion comes.”

Many people with dementia are more alert at night than they are all day – just when their caregivers need to sleep. Rather than try to alter this mismatch, Elderserve At Night embraces it.

The program is the brainchild of David Pomeranz, the executive director of the Hebrew Home, who opened the program in 1996. He says the idea came to him after hearing heartbreaking stories from struggling families.

“People were sleeping in front of doorways because they were concerned that mom or dad would wander out of the house,” Pomeranz says.

Those families desperately needed a safe place for their loved ones at night – and a decent night’s sleep. And the Hebrew Home set out to meet that need.

It’s a similar philosophy – to meet clients’ needs wherever they may be – held by the therapists and social workers who now staff Elderserve. “Here, their behaviors are normalized,” Pomeranz explains.

“Everything is OK. Activities are structured for them to be successful. They eat, they relax – they can be themselves. To us, this is who they are. We’re not the family members who are dealing with that incredible loss of seeing someone who was and isn’t any more.”

The program is covered by some private insurers and by New York Medicaid, the federal-state program for poor and disabled people. To the extent that it can keep people out of nursing homes, it can save money.

Medicaid pays a typical nursing home in New York about $320 per day versus $200 for the overnight program. But so far, few, if any, other overnight programs exist solely for people with dementia. Pomeranz thinks the idea hasn’t caught on with other nursing homes because it is difficult to find staff who are willing to work the overnight shift. It was also important to get Medicaid and other insurers to reimburse for the program, and that funding has not been pursued in every state.

Elderserve At Night tries to serve its clients even as their conditions worsen. Next door to the room where Brunhilda and others are dancing and enjoying the live music, it feels like another universe. The music is soft, the lights are low and a subtle scent of lavender is in the air. People with more advanced disease spend the evening here. Some are sitting around a table, each with a caseworker, who helps them work with blocks and basic puzzles.

Several other people are slumped in wheelchairs, getting hand massages from the social workers. Though their faces look expressionless, they seem calm. For people with advanced dementia who might otherwise become agitated at night, this room is a sanctuary, says Messina.

“We’re engaging them on their level. And being able to do that might be through touch, it might be through sound, it might be through scent,” she says. “It works for them. It gives them a sense of serenity.”

When the sun comes up tomorrow, all the clients will be given breakfast and everyone here will return home. Brunhilda will take the van back to her apartment in upper Manhattan where she will be greeted by her daughter before she leaves for work. Josephina says she doesn’t know exactly what happens during her mother’s nightly sojourns, but she is grateful.

“She was very weak when she started there. We had to carry her up and down [the stairs]. But now she walks up and down. She walks to Broadway,” Josephina says. “She would not react to any of the conversation. Now she does. She’s a totally new person. I would say she’s 200 percent better.”

Josephina says the program helped to improve her mother’s life and her own life as well. But Brunhilda was battling congestive heart failure, and she succumbed to the disease a few months after we reported this story.