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.

 

Alzheimer’s Patients and Pretend Play

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dollsVivian, 88, holds a baby doll at Sunrise Senior Living in Beverly Hills, California. Some memory care and nursing homes are using a technique called doll therapy to ease anxiety among their residents with dementia.

Sitting beside a neatly made crib, 88-year-old Vivian held up a baby doll dressed in puppy dog pajamas. “Hello gorgeous,” she said, laughing. “You’re so cute.”

Vivian, who has Alzheimer’s disease, lives on a secure memory floor of a home for seniors. Nearly every day, she visits the dolls in the home’s pretend nursery. Sometimes she changes their clothes or lays them down for a nap. One morning, she sang to them: You are my sunshine, my only sunshine. You make me happy when skies are gray.

No one knows whether she believes she is holding a doll or a real baby. What the staff at Sunrise Senior Living do know is that Vivian — who can get agitated and aggressive — is always calm when caring for the dolls.

Nursing homes and other senior facilities nationwide are using a controversial technique called doll therapy to ease anxiety among their residents with dementia. Senior care providers and experts say the dolls are an alternative to medication and help draw in elderly people who are no longer able to participate in many activities.

“Many people with Alzheimer’s are bored and may become depressed or agitated or unhappy because they aren’t engaged,” said Ruth Drew, director of family and information services at the Alzheimer’s Association.

Caregivers are not trying to make their residents believe the dolls are real infants, and they do not want to infantilize the seniors, Drew said. They are just “trying to meet them where they are and communicate with them in a way that makes sense to them.”

Other senior facilities that use the dolls include On Lok Lifeways in San Francisco and the Los Angeles Jewish Home in the LA suburb of Reseda. Some, including Texas-based Belmont Village Senior Living, eschew them, arguing that it can be demeaning for seniors to play with dolls.

“They are adults and we want to treat them like adults,” said Stephanie Zeverino, who works in community relations at Belmont Village Senior Living Westwood. “These are very well-educated residents.”

The facility prefers other types of therapy, including art and music, she said. And staff members there work with residents to play brain games that promote critical thinking.

“We want to provide a sense of dignity,” Zeverino said.

Studies on doll therapy are limited, but some research has shown it can reduce the need for medications, diminish anxiety and improve communication, according to Gary Mitchell, a nurse specialist at Four Seasons Health Care in the United Kingdom who has authored a new book about doll therapy.

However, Mitchell acknowledged it is possible that doll therapy, because it can infantilize adults, “perpetuates a lot of stigma with dementia care that we are trying to get away from.”

Some families worry about their relatives being laughed at when they engage in doll therapy, Mitchell noted. He said he understands those concerns, and even shared them when he worked at a senior residential center. But when one resident requested that he allow her to continue caring for a doll, he soon saw the positive impact of the therapy.

Mitchell said it can be very beneficial for some people — especially those who may get easily distressed or pace obsessively. “Having the doll … offers them an anchor or a sense of attachment in a time of uncertainty,” he said. “A lot of people associate the doll with their younger days and having to care for people.”

At Sunrise Beverly Hills, the nursery is set up like a baby’s room. A stuffed bear rests inside the wooden crib. On a shelf above are framed photos of Vivian and a few other women who regularly interact with the dolls. A few bottles, a swaddling blanket, a Dr. Seuss book and diapers sit on a nearby changing table.

The nursery is just one of several areas in the Sunrise centers designed to engage residents, said Rita Altman, senior vice president of memory care for Sunrise, which has facilities in the United States, Canada and the United Kingdom. There are also art centers, offices, gardens and kitchens where residents may find familiar objects from their past.

Altman said the nurseries tend to attract residents who have an instinct to care for babies. Some people, she said, may not be able to talk anymore but still find a sense of security with the dolls. “You can read it in their body language when they pick up the doll,” she said.

Sunrise caregivers also use the dolls to spark conversations by asking questions: How many children do you have? Was your first baby a boy or a girl? What are the best things about being a mom?

The executive director of the Beverly Hills facility, Jason Malone, said he was skeptical about the use of dolls when he first heard about them.

“I almost felt like we were being deceitful,” he said. “It didn’t feel like it was real.”

But he quickly changed his mind when he realized that staff could use the dolls respectfully.

“We don’t want to confuse treating our seniors as children,” Malone said. “That’s not what this activity is truly about.”

Vivian began caring for the dolls soon after moving into the facility. When asked what she likes about the dolls, she said, “I love babies. I have some very nice ones back where I live now.”

Vivian’s daughter, Carol, said her mother raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer’s about five years ago. Carol said she doesn’t see any downside to her mother caring for the dolls. It is a “creative way of dealing with her where she is now,” she said.

“I always describe my mother as being … very similar [to] many of my young grandchildren in her cognitive skills,” Carol added.

For some residents, including 87-year-old Marilou, holding the dolls is one of the only times she interacts with the staff. Marilou is confined to a wheelchair and rarely speaks. She sleeps much of the day.

There is not much [Marilou] can participate in,” said Vladimir Kaplun, former coordinator of the secure memory floor. “When she spends some time with the dolls, she wakes up and she brightens up.”

On a recent day, caregiver Jessica Butler sat next to Marilou, who held a doll against her chest and patted her on the back. She kissed the doll twice.

“The baby is beautiful like you,” Butler said.

“It’s a boy,” Marilou said. “Five months.”

“Is the baby five months?” Butler asked. “You’re doing a good job holding the baby.”

Caring for the dolls is second nature to Marilou, who made a career of being a mom to five children and was involved with the PTA, Girl Scouts and other activities, according to her daughter, Ellen.

Ellen said it’s been difficult to watch the decline of her mother, who hasn’t called her by name in over a year. Watching her with the dolls helps, she said.

“To see the light in her eyes when she has a baby doll in her arms, I don’t care if it’s real or if it’s pretending,” she said. “If that gives her comfort, I am A-OK with it.”