Jane Ingels has always prized her independence.
Until last year, the 94-year-old widow lived happily in a two-bedroom house in a Raymore retirement community. Ingels drove herself to the bank and grocery store until October, when a minor stroke left her in a wheelchair. While she was in the hospital, doctors diagnosed her with dementia, a general decline in brain function.
Ingels could no longer live alone. So her son Harry Ingels, who lives in Kansas City, started an exhaustive search for long-term care.
“It was difficult,” Harry Ingels said. “Not to find a place for her to live, but to find a place where we thought she could thrive.”
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His mother needed a place that could provide specialized care for her dementia but still trust her with a lot of freedom.
In January, he found Wexford Place, a Kansas City retirement community that had recently opened a memory care center.
It is one of two area retirement communities that opened memory care centers this year. The other is Tallgrass Creek in Overland Park. They join several other area memory care centers, including Sweet Life Shawnee, which opened 14 years ago.
As the country’s population ages, such centers fill a need for dementia and Alzheimer’s care for people whose minds are slowly unraveling but who are still strong in body and spirit.
Meeting residents where they are
Alzheimer’s disease, the most common type of dementia, is the sixth-leading cause of death in the United States. More than 5 million Americans are currently living with Alzheimer’s, according to the Alzheimer’s Association, and without a medical breakthrough, that number could triple to 16 million by 2050.
Risk increases with age and is greater for women. By 65, 1 in 6 women have Alzheimer’s, compared with 1 in 11 men. Baby boomers — those born between 1946 and 1964 — started turning 65 three years ago.
The disease has no known cure, said Dr. Jeff Burns, co-director of the Alzheimer’s Disease Center at the University of Kansas Medical Center.
“We see loss of brain cells everywhere,” Burns said. “Early on, it’s memory. Later on, it’s everywhere.”
This issue has inspired a movement to improve the quality of long-term care for people with dementia and Alzheimer’s. One of the national organizations spearheading that movement is the Pioneer Network, which held its 14th annual conference in Kansas City last week.
The conference focused on person-directed care, the philosophy at the core of memory care centers.
Wexford’s center, for example, is set up like a home, with bedrooms, shared living spaces and a courtyard. Nurses, called “care partners,” engage residents with activities that involve music, art, baking and gardening.
Memory care staff members are trained not to correct residents or pull them out of their memories because that can cause anxiety.
“We meet them where they are,” said Stacie Shelman, director of health care sales at Tallgrass Creek.
The environment is also designed to mitigate stress. Open courtyards and abundant windows keep residents from feeling confined by the locks on the doors. Residential wings, or “neighborhoods,” are painted soothing colors — sage and paprika at Wexford Place — to help orient residents.
Glass-cased boxes outside every bedroom also help residents find their way home. The box outside Jane Ingels’ room contains family photos, a sunflower-shaped ashtray she’s had for decades, and her passport, filled with stamps from France, Germany and the Bahamas.
Both Wexford Place and Tallgrass Creek also have stations designed to stimulate positive personal memories.
At Tallgrass Creek, program manager Cougar Gray installed a small putting green for a resident who loves to golf. Another resident who spent vacations at the beach can revisit those memories at a station with sand and seashells.
Gray buys potted plants for a busy resident who loves to garden. During a tour in June, she strolled the courtyard in a sun hat, looking for the perfect place to put a new pink flower among the yellow day lilies and black-eyed Susans.
“We might have to plant more weeds to keep her busy,” Gray said, only half-joking.
At Wexford Place, there is a laundry station where residents can fold towels and sort socks.
Letitia Jackson, vice president of corporate engagement for Wexford Place’s parent company, Senior Star, said that doing seemingly mundane tasks like folding laundry can be comforting for a resident who has lost a grip on time.
“It simulates that normal routine and gives them purpose,” Jackson said.
Memories can be stimulated by sight, touch, sound, smell and taste, so memory care centers are designed with all five senses in mind.
At Tallgrass Creek, staffers bake cookies or simmer stews in the kitchen to stimulate residents’ appetites. A popcorn machine at Wexford Place evokes memories of movies and state fairs, and a jukebox beckons residents to dance to Sinatra standards.
When Cindy Ashman, who was searching for a place for her father, toured Wexford Place with her sister, they joked that the jukebox at their memory care center would have to have songs by Janis Joplin and Jimi Hendrix.
“Our memory care is going to be psychedelic,” Ashman said.
The Best Friends Approach
Memory care has come a long way since the 1970s, said Bill Keane, one of the founding members of the Alzheimer’s Association and the Pioneer Network.
The earliest memory care centers were called Alzheimer’s special care units, said Keane, who lives in Chicago. There were no stations or activities designed to keep residents’ brains and bodies active. The staff were trained to focus on tasks, not individuals. Efficiency was more important than dignity.
“There would be feeding rooms with half-moon tables,” Keane said. “In the center, a staff person would sit and feed four people simultaneously with a pureed diet.”
After his mother was diagnosed with Alzheimer’s in 1975, Keane became an advocate for person-directed care, a new approach that emphasized empathy and encouraged caregivers to tailor their care to the needs of individuals.
“I was considered a radical then,” said Keane, who helped found the Alzheimer’s Association in 1980.
By the late 1980s, more people were pushing for person-directed care. David Troxel and Virginia Bell were among them.
Together, Troxel and Bell ran a day program for people with dementia at the University of Kentucky Alzheimer’s Disease Center. Troxel said they created a “fun, party-like environment” in which participants exercised, listened to music and got to know one another on a personal level.
“We knew if someone liked strawberry ice cream or once hit a hole-in-one on a golf course,” said Troxel, who now lives in Sacramento, Calif.
The program inspired Troxel and Bell’s “Best Friends Approach” to Alzheimer’s care that teaches what Troxel calls “the power of little moments.”
Troxel used the Best Friends Approach with his mother after she was diagnosed with Alzheimer’s. When Troxel’s mom became agitated, he would brew her a cup of her favorite Earl Grey tea. When it became hard for her to communicate, he would turn on an old musical, and they’d sing along to all the songs.
Many modern memory care centers subscribe to the Best Friends philosophy, hence the memory stations and packed activity schedules.
Early this year, Troxel went to Wexford Place to consult with the staff. A couple of months later, he spoke at a new care facility in Shanghai, China, with room for 3,000 residents.
The cost of memory care is generally more than assisted living and less than nursing care. Renting a room at Wexford Place, for example, costs between $5,000 and $5,900 per month. That price includes 24-hour-a-day care as well as meals and activities. In comparison, Wexford Place’s assisted living rentals start at $3,400 per month.
Cindy Ashman found Wexford Place for her 83-year-old dad, George Colwell, after his dementia made it too hard for her to care for him at home. On bad days, her dad — a tough guy who worked in steel mills and served as a paratrooper in the Korean War — would mix up his daughters’ names or forget that his wife, Donna, had died.
“He would say, ‘Can you pick up Donna and bring her here later? I’d like to see her,’” Ashman said. “It breaks your heart when they do things like that.”
Wexford cost about $5,450 per month, which he paid for out of pocket. That’s a lot of money, Ashman said, but it was worth it because her dad felt at home there.
As for Ashman, she loved the memory care center’s patient “care partners,” who eased her father back to bed when he woke at 4:30 a.m. and started getting ready for work. Ashman moved her dad after a spot opened at the Veteran’s Home in Cameron, Mo.
As research continues to unlock the mystery of Alzheimer’s, memory care centers will also continue to evolve, Keane said.
Take those memory-stimulating stations, for example. Keane said stimulating positive memories can be therapeutic.
“But we don’t want to stimulate negative memories,” he said.
A military uniform could evoke a deep sense of pride for one man. For another, it could unleash a flood of horrific memories. That’s why it’s so important, Keane said, for memory care staff to get to know residents on a personal level.
A person, Keane said, consists of so many things. Fears, hopes, wants, needs, morals and spirituality — those things don’t disappear with a dementia diagnosis.
“People with dementia,” he said, “are much more than just memories.”
See “Alive Inside: A Story of Music & Memory”
A new documentary called “Alive Inside” explores how music can help dementia patients retrieve positive memories and restore their sense of self.
The film by documentarian Michael Rossato-Bennett follows social worker Dan Cohen, the founder of a nonprofit organization called Music & Memory. It features touching footage of dementia patients “waking up” while listening to songs from their youth, as well as interviews with neurologist Oliver Sacks and musician Bobby McFerrin.
“Alive Inside,” which won the audience award for U.S. documentary at the 2014 Sundance Film Festival, opens 7 p.m. Friday at Tivoli Cinemas, 4050 Pennsylvania Ave., in Westport. The opening night event features an audience Q&A led by Michelle Niedens from the Heart of America chapter of the Alzheimer’s Association, as well as an update on a Music & Memory program in the Kansas City area. Tickets cost $8.50.