Tag Archives: Alzheimer’s

Changing The Way We Look At Dementia 

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn.

One by one, they talked about what it was like to live with dementia in deeply personal terms.

Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.

“Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’” said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organize the event.

New grassroots movement

The session, followed by an hour-long discussion about dementia, is part of a new grass-roots movement in the U.S. aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding.

A centerpiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations across the country.

Currently, more than 13,200 people are registered as Dementia Friends in the U.S., and organizations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, Wyoming) are hosting events to sign up more.

Globally, almost 14 million people in 33 countries are involved in the movement, which originated in Japan.

To become a Dementia Friend, most people attend an hour-long presentation focused on several themes:

Disease vs. typical aging. Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of aging.

Scope of symptoms. Dementia triggers a wide array of symptoms, not just memory loss.

Quality of life. People with dementia can live well, often for years.

Maintaining identity and respect. People with dementia retain a sense of self and aren’t defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.)

“If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends program in England and Wales, with about 2.3 million members, that has licensed its model to the U.S.

“It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,” said Meredith Hanley, project lead for Dementia Friends USA.

William Anderson, chief of police for St. Cloud, Minn., went to a session of this kind late last year, with about 40 members of his department. One exercise — writing down all the steps involved in making a peanut butter and jelly sandwich — made an especially strong impression.

“I’d never thought about everything that goes into something that simple: taking the peanut butter and jelly out of the cabinet, unscrewing the tops, getting a knife, spreading the sides of the bread, putting the pieces on top of each other, cutting it down the middle,” Anderson said, adding that this was only a partial list.

“The point they were making was that folks with dementia might remember some of these steps but not others. At some point, they’ll get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.”

Make life more manageable

Now, Anderson thinks about “how we can make life more manageable for these folks, in simple ways.” An example: The St. Cloud Police Department’s building has a large vestibule, with two big glass doors. “If you have dementia, you’re going to walk into that vestibule and probably turn around in circles because the doors don’t have an identifier saying ‘police,’” he said, adding that introducing new signage is under consideration.

Committing to a concrete action — visiting or phoning a family member with Alzheimer’s regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance — is required to become a Dementia Friend, though sponsors don’t check if people follow through.

“This is a social action movement,” said Emily Farah-Miller, executive lead for ACT on Alzheimer’s, a statewide effort in Minnesota to create dementia-friendly communities and disseminate best practices regarding dementia in health care settings.

More than 10,000 U.S. Dementia Friends come from Minnesota, which began recruiting residents for the program two years ago, before it became a national initiative.

This year, Minnesota ACT on Alzheimer’s leaders are working with African-American, Hispanic, American Indian, West African and Hmong communities in their state to make culturally sensitive adaptations to their programs. And they’re piloting a modified version of Dementia Friends in several elementary schools “to create a dementia-friendly generation of youth,” Farah-Miller said.

Individuals can also earn a “Dementia Friends” designation by watching an introductory video on Dementia Friends’ USA website, as well as a second video about dealing with people with dementia in various settings such as restaurants, stores, banks, libraries, pharmacies, faith communities and public transportation.

If you encounter someone who seems confused and disoriented on a bus, train, taxi or subway, try to understand what that person might need, one of these videos advises. Speak slowly, using short, simple sentences and give the person adequate time to respond. Remain calm and reassuring and avoid arguing or embarrassing the person who may have forgotten where they’re going.

Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program.

Some of what he tells them: “As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.”

Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.

What he and other people with dementia want most is “emotional connection — that feeling of love that we had, that we may have lost” when a diagnosis was delivered and a sense of being a burden to other people descended.

In 2016, Savage moved to a campus in Southington, Conn., where 133 people with dementia reside in assisted living or a skilled nursing facility. Stephani Shivers, chief operating officer of LiveWell (formerly the Alzheimer’s Resource Center), which owns the campus, is leading Connecticut’s Dementia Friends initiative.

“What I’ve seen is that barriers seem to dissolve for people who attend” information sessions, she said. “Whether it’s ‘I’m not sure what to say to someone with dementia’ or ‘I’m nervous about being with someone with dementia,’ the ‘I don’t know what to do’ falls away.

“It becomes me relating to you, a person with dementia, as another human being — a human being living with a cognitive disability, just like people living with physical disabilities.”

(Come join us on Feb. 13 from 12:30 to 2 p.m. ET for a live discussion about improving care and services for people with dementia and supporting caregivers. RSVP here. )

When Pretend Play Is Real For Alzheimer’s Patients

dollselderlyalzheimers

BEVERLY HILLS — Sitting beside a neatly made crib, 88-year-old Vivian Guzofsky held up a baby doll dressed in puppy dog pajamas.

“Hello gorgeous,” she said, laughing. “You’re so cute.”

Guzofsky, 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 in August, 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 Guzofsky — 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.

“A lot of 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 aren’t trying to make their charges believe the dolls are real infants, and they don’t 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 people to care for.”

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 Guzofsky 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 U.S., Canada and the U.K. 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.”

Guzofsky 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.”

Guzofsky’s daughter, Carol Mizel, said her mom raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer’s about five years ago. Mizel said she doesn’t see any downside to her mother caring for the dolls. It is “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,” Mizel added.

For some residents, including 87-year-old Marilou Roos, holding the dolls is one of the only times they interact with the staff. Roos 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 babies, she wakes up and she brightens up.”

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

“The baby’s beautiful like you,” Butler said.

“It’s a boy,” Roos 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 Roos, 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 Swarts.

Swarts 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 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.”

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.