Dignity, respect at core of new approaches to Alzheimer’s care

A woman sits at a table in a sun-filled dining room, a bowl of soup before her, copies of the San Francisco Chronicle and Wall Street Journal in her hands. She greets a visitor with a big smile. She points out the view — a welcoming outdoor patio with a quiet tree-lined street beyond — visible through a wall of windows.

Emma Davis holds a “twiddle muff” made for memory care residents at Rhoda Goldman Plaza. photo/courtesy rhoda goldman plaza

“I like it here,” she says. “The people are uniformly pleasant and I have nothing to complain about.” She speaks of family in the Midwest — “business people, with a good reputation” — and asks the visitor about her work. Then she says, “A long time ago, I had a job. Now I just go through my day here.”

The conversation lags a moment, and then the woman repeats what she has already said. Twice.

She is a resident of the memory care unit at Rhoda Goldman Plaza, an assisted-living community in San Francisco. She is not the woman she used to be, and she cannot remember much about that person, but she appears content.

Among the dozen or so other residents in the dining room, one says she loves animals, one used to be an architect, another likes to talk about books. They are good-humored, even witty, and meet a visitor’s gaze directly.

Some interact with passers-by, responding to warm greetings from staff; others do not. Some feed themselves; others cannot, and aides assist them. Pictures of residents attending events or on a recent field trip adorn a bulletin board on the wall.

This is what dementia looks like from the outside, looking in.

Of the top 10 causes of death in the U.S., Alzheimer’s is the only one that can’t be prevented or cured, according to the Centers for Disease Control and Prevention.

But as the research moves forward, memory care in senior residences and at home is changing. The focus, experts say, has moved from coping with memory impairment to showing respect for the individual. The goal is to destigmatize dementia by helping families make a significant attitude adjustment, moving them from a place of grief to one of compassion.

Bay Area Jewish agencies and institutions that provide Alzheimer’s care are dealing with the increasing numbers of those with dementia as best they can, and putting into practice some new trends in Alzheimer’s care. Here are some of them.

Baking challah for Shabbat

Every Friday, residents in the Rhoda Goldman Plaza memory care unit — also known as The Terrace — bake challah in a kitchen attached to the art room. “Kneading bread is a cool sensory experience, and residents like it,” said Adrienne Fair, the assistant executive director.

Another sensory experience residents seem to enjoy is painting — with marbles, not brushes. Emma Davis, therapeutic programming manager at Rhoda Goldman, proudly displays the residents’ marble paintings — artwork made by rolling marbles on paper coated in paint.

“I matted them and they look great,” she said. “I’m going to put these up in the dining room, change the décor a little.”

Painting with marbles may not sound like a meaningful way to pass the time, but Davis would disagree. “We learn about who the residents used to be and who they are becoming,” she said. “Yes, people with dementia are losing something, but they also are gaining the freedom to be happy, to be free of any stigma, to live in the moment. That’s not a bad way to live.”

Structure and routine are necessary in a memory care unit, especially when it comes to medication and nutrition. But Fair and Davis emphasized that flexibility is also needed when person-centered care is the focus.

“We set up an environment that is interesting and soothing at the same time,” Fair said. “For instance, we have an armoire in the hall with a sign directing residents to open the drawers, which are filled with scarves and hats. It’s something fun for them to do, something enticing and unexpected.”

Caregivers at Rhoda Goldman focus on making every resident’s day better, rather than focusing on the memory impairment. Sometimes pets come to visit. Some days residents from other floors direct art projects, play instruments or sing.

Some residents in the assisted living units knit “twiddle muffs” for memory care residents who fiddle with the brightly colored yarn. “It gives them something to do with their hands, and it’s soothing and tactile,” Fair said.

Some days, Terrace residents are escorted downstairs for a walk on the patio or for a party. “They may not quite comprehend the theme or the purpose of the event but even people with severe memory impairment have social graces. They can eat a cookie, smile and talk to people,” Fair said.

“It’s our job to give each individual here the best possible life,” said Davis.

Kitchen table conversation

The Jewish Home is creating smaller, more intimate dining rooms for those with dementia. photo/courtesy jewish home

Most memory care units in senior residences have a communal dining room. At the Jewish Home in San Francisco, caregivers are experimenting with another approach — setting up several kitchens and dining rooms in smaller, more intimate areas.

“When people develop challenges with memory, unfamiliar settings can be unsettling, so one thing the Jewish Home is doing is making some areas look more like rooms you would see in a home,” said Dr. Christine Ritchie, a UCSF professor of clinical research and aging who is based at the Jewish Home. “It’s important to keep developing new approaches to memory care.”

One approach that has worked well is the garden unit, designed for residents with Alzheimer’s disease and other types of dementia. The unit includes an enclosed patio with trees, flowers and seating areas, and the staff reports that residents enjoy their time outdoors.

A board-certified geriatrician and palliative care physician, Ritchie is involved in several research projects at the Jewish Home.

Christine Ritchie

One such study involves memory care residents who are part of a program called Care Ecosystem. The University of Nebraska Medical Center and UCSF are conducting the study to learn how to better support caregivers with decision-making, medications, support and online education. The study also is looking at remote monitoring using smartphones, watches and home sensors.

“The program is highly relevant to the population at the Jewish Home,” Ritchie said. “The Jewish Home is planning for different levels of care, keeping people independent as long as possible by pulling in technology to support them.”

Another area of her research seeks to understand the impact of medications prescribed for dementia on thinking and cognition. Ritchie hopes that both studies will lead to improvements in personalized care.

“When it comes to Alzheimer’s and other forms of dementia, all roads lead downhill, though at different paces for different people,” Ritchie said.

“In the future, caregivers in residences and at home will be better able to support people across different settings, support more independent living and offer more dignity-promoting situations and accommodations for people with memory loss.”

Bringing in the mail

A Bay Area woman struggling with mid-stage Alzheimer’s was obsessed with getting the mail. Her husband, serving as her caregiver at their home, let her bring in the mail each day, but later she would forget and want to do it again. And again. When her husband repeatedly told her the mail had already come, the woman would become agitated.

Andrea Korsunsky

“She couldn’t hold on to the fact that she had already brought in the mail, and her husband felt that he had failed her,” said Andrea Korsunsky, director of Jewish Family and Children’s Services’ Center for Dementia Care, a program of Seniors at Home.

“We suggested that he make sure that something was always in the mail box, maybe a love letter for his wife from him, and we were able to help them,” Korsunsky said. “This small tool helped the couple communicate in a different way by enhancing her quality of life just by focusing on the moment.”

Korsunsky said people caring for family members with memory loss need these little tools from professionals because the person with dementia will not be the same every day. “What we offer is for families caring for individuals in the early or mid-  stages” of the disease, she said. “Our approach is practical support for the matter at hand. We don’t get too caught up in statistics or the progression of the disease or the hardships.”

Instead, she said, “we focus on the human element, the strengths, and working with the whole family, we build on that. That’s really important, because families need support to cope with the ever-changing processes that are part of this disease.”

For example: At a client’s home, a staff member learned the family member with Alzheimer’s was expected to eat lunch alone between 11:30 a.m. and noon daily to accommodate other family members’ schedules. It wasn’t working. The worker suggested the meal schedule be more flexible, and that a family member sit at the table too, because for a person with Alzheimer’s, it doesn’t feel normal to eat alone.

It is also not uncommon for someone with memory loss to fire their home caregiver — who then summons a family member to come home and deal with the situation. When called upon, Korsunsky’s staff works to determine the reason for the firing.

“We look for a trigger,” she explained. “What causes agitation? A ringing doorbell? A barking dog? Identifying a trigger is important — sometimes the person with memory loss can’t tell you — and if we can make a connection, we can give the hired caregiver tools to help re-establish a good connection and strategies to minimize stress.”

The goal is to “help smooth over the rough patches,” Korsunsky said. “The person with memory loss can’t adapt, so everyone else must.”

The art of connecting

Isabelle Young, 15, volunteers once a week at the Reutlinger Community for Jewish Living in Danville. She works one-on-one with Rita Goldman as part of an innovative intergenerational art program for seniors, mostly those residents in memory care and others, like Goldman, who are not.

“I’ve created a close bond with Rita, who is easy to talk to and open to new things,” said Isabelle, a sophomore at Monte Vista High School. “She doesn’t so much like the art part, but she really likes spending time together.”

Isabelle Young, 15, makes art with Rita Goldman at Reutlinger Community for Jewish Living. photo/courtesy reutlinger

The “art part,” Opening Minds through Art, was developed at the Scripps Gerontology Center at Miami University in Ohio. Five Reutlinger staff members traveled there for training.

“The art projects include painting, collage, ink blots, papier mâché or glitter — everybody loves the glitter,” said Carol Goldman, director of wellness and life enrichment at Reutlinger. “Each art project requires a simple process, and residents have choices along the way.” One group of residents works with teens, another with nursing students.

Reutlinger has put into place other new practices in the memory care unit, as well.

“We approach residents from a ‘best friends’ model, get to know them — everything from their favorite colors to the names of their pets —and we engage family members with barbecues and candlelight dinners,” Carol Goldman said. Outdoor activities, sing-alongs and a mild exercise program also are on the schedule.

She is especially pleased with the relationships formed between residents and volunteers taking part in the art program. Lori Young, Isabelle’s mother, first heard of the volunteer opportunity through Chabad of Danville. She encouraged both Isabelle and son Alex, 17, to participate. Alex is convinced that the resident he works with has no dementia, his mother said, because the woman is so sharp mentally.

As for Isabelle, the experience has given her patience and confidence. “Before I started, I was kind of afraid because other than delivering baskets at Purim, I’d never worked with older people before,” she said. “Now I love it.”

Lori Young was so impressed with the art program that she, too, signed up to volunteer. “Every week, I escort my resident from the memory care unit to the art room. I sing along the way, and she sings with me,” she said. “At 105, she is a spunky, joyful person, filled with love and affection.

“At the end of the evening, when I show her her work, she doesn’t know where it came from, but she seems proud of it.”

Lori Young said that when she tells people about her volunteer work, they tell her it’s a mitzvah but they could never do it.

“For me, it’s about how much the quality of life matters, how much these individuals still matter,” she said. “Every moment matters.”

On the rise: ‘The longer you live, the higher risk’ of Alzheimer’s

More than 588,000 Californians are afflicted with Alzheimer’s disease, the most common form of dementia, according to a report by the Alzheimer’s Association, and that number is expected to nearly double by 2030.

In the Bay Area, more than half of residents 85 and older have some form of dementia, and by 2020 there will be a 49 percent increase in the number of residents with Alzheimer’s, predicts S.F.-based Jewish Family and Children’s Services, which partnered with the Mount Zion Health Fund to develop Rhoda Goldman Plaza in 2000 and opened a Center for Dementia Care last year.

An estimated 5.4 million Americans suffer from Alzheimer’s, which is one of the top 10 causes of death in the U.S. and at present cannot be prevented or cured, reports the Centers for Disease Control and Prevention .

By 2050, when 78 million baby boomers will be at greatest risk for Alzheimer’s, there will be a 300 percent increase in new cases unless a cure is found.

What is causing this flood?

“People are living longer, and the longer you live, the higher risk of Alzheimer’s you have,” said Elizabeth Edgerly, chief program officer for the Northern California and Northern Nevada chapter of the Alzheimer’s Association in San Jose. “As it is now, the situation is not sustainable, but the government, agencies and research institutions all are working to address it in a big way.” — patricia corrigan

In Part 2 later this summer, J. will profile Bay Area Jews dealing firsthand with family members suffering from Alzheimer’s disease.

Patricia Corrigan

Patricia Corrigan is a longtime newspaper reporter, book author and freelance writer based in San Francisco.