A few years ago, Janice Rogers of Belchertown, Mass., made a decision many adult children dread. Her mother, Rita, was then 91, living alone in her mobile home, and her health was going downhill.
"I didn't feel I could take care of my mom, which is an awful thing to say," says Rogers. "I felt I needed to 'put' her somewhere."
Since then her mom, now 94, has developed dementia. But the first facility Rogers chose didn't work out. The place her mom lives now is known as a continuing care retirement community, or CCRC, called Loomis Lakeside at Reeds Landing in Springfield, Mass. CCRCs offer multiple levels of care, from independent living to assisted living to memory care to a skilled nursing unit. According to Lisa McCracken, head of research and analytics at NIC — the National Investment Center for Seniors Housing & Care — the number of memory care units in the U.S. has grown 62% in the last decade. But this community is unusual: it doesn't have a memory care unit. It's part of a movement to make living with dementia less segregated and more integrated.
Freedom and inclusion
Rita Orr, Rogers' mother, lives in the skilled nursing wing these days. She can walk around the facility as much or as little as she likes — including going outside. Which is fine with her daughter.
"She sees freedom, but she's OK," Rogers says. "To have a locked door? That wouldn't go well with her."
Lori Todd, executive director of Loomis Lakeside at Reeds Landing, says people sometimes try to leave locked memory care units for the very reason that they feel confined. Here, she says, they want those with dementia to live the best life they can, in community.
"What we do is meet them where they are, and work with the other residents to teach them how to be good neighbors" to those living with dementia, says Todd. "So we're not isolating them, just as we wouldn't isolate people that all had congestive heart failure or diabetes."
Training for staff and residents
Todd says they train staff and residents on how to interact with someone with dementia — like how to talk to someone who is looking for a spouse who has died, or how to calm a person if they're upset. It often involves redirecting them or including them in a new activity. She says the staff observes residents with dementia carefully to decide whether they are OK to go outside unaccompanied or if they need an aide to be with them.
If this approach to dementia care sounds unusual, it is. Todd says theirs is a small but growing movement. "It's really picking up," she says. "It's just a so much more dignified way of caring for people."
It's a way that involves residents as well as staff. Ann McIntosh has lived here for 16 years and is grateful for the dementia training she's received. The key to communicating with a neighbor with dementia, she says, is to meet the person in their world, not yank them back to the present.
"When somebody wants to go see their husband, whom I know died five years ago, I say, 'Yeah, let's go see what we can find,'" McIntosh says. Then as they walk down the hall, she says, the person with dementia may spot a group of people and want to join in. "So it solved the problem, because they don't remember what it was they started with," she says. "And just simply being able to keep them involved makes me feel better, because we're all part of the same community."
Fellow resident Helene Houston agrees, saying the dementia training program "has made it so that dementia is not so scary for people." It's also made her feel really good about the place she calls home.
She and her husband volunteer their time in a program for fellow residents with dementia called SAIDO learning, which originated in Japan. "We do brain exercises with them," says Houston, exercises that use both math and English. They are delighted when they see a person's cognition improve as a result of coming to class on a regular basis.
"Behavior is an unmet need"
Brenda Mendoza is life enrichment and memory care director here. She says training for the staff is mandatory. For residents, it's voluntary. And a lot of residents do have questions about this way of doing things. Mendoza says she'll often meet with them one-on-one "and talk a little bit about why we do it, and what's the benefit? And how would you feel? And putting yourself in their shoes. Like, that's how I want to be treated if I'm ever here."
Mendoza says when it comes to handling behaviors such as aggression or agitation, which are often associated with dementia, "behavior is an unmet need." She says she and the staff work hard to find out what is causing the behavior. Is the person scared, hungry, in pain, or missing their family?
"It's just, how do we figure out what did they love or enjoy doing? Let me try to engage them in what they used to do," she says.
But the thought of being without a locked memory care unit is off-putting to some who worry about safety. Arnie Beresh is a former podiatric surgeon who was diagnosed with dementia at 62. "I describe it like hitting a wall doing about 200 miles an hour," he says.
That was 10 years ago. Beresh has worked to slow the progression of his disease by eating well, exercising and staying socially engaged. His brain works best in the morning, he says, but by afternoon, "I'm running out of gas."
He lives at home with his wife in Michigan, but he knows he could live elsewhere at some point. "I believe in locked memory care units," he says. "And my reason for that is I believe it is more of a safety factor for the patient with dementia."
Autonomy and changing ideas
Many family members of people with dementia agree and feel a locked door is the best way to ensure their loved doesn't leave the facility and endanger themselves. Kirsten Jacobs gets that. She's with Leading Age, a network of organizations that serves older adults.
"I think it's super important to acknowledge that instinct of wanting to protect our loved ones," she says. "But what do we lose … when we focus solely on one type of safety, without acknowledging the richness that can come from a life that allows for some freedom and flexibility and autonomy?"
Jacobs says if you go back a few decades to a common practice in nursing homes, "we used to tie people up, and that was in the name of safety. We learned that wasn't the safest approach, and now that's not a model that we follow."
She points to a movement that began in the late 1980s called "Untie the Elderly," which sprang up to discourage the use of restraints in nursing homes and other health care settings.
She adds that there's another, practical reason for a more inclusive approach to dementia care. "We cannot build enough bricks and mortar … separate memory care communities to meet the needs of those living with dementia," she says. "So we have to be more expansive in our thinking."
"Treated as a person"
Joanna Fix, a longtime psychology professor, was diagnosed with Alzheimer's disease in her late 40s. She's now 57. She is adamantly opposed to locked memory care units.
"One of the problems I see is the people that make the decision about memory care are the family members," she says, whereas she's the one living with the disease. She would like more people to educate themselves about what it means to have this condition, and engage accordingly.
"It's a choice for people with healthy brains to decide how do they want to interact with those of us living with dementia," she says.
Arnie Beresh feels the same way. He says no matter where people with dementia live, "the major thing is, we still need to be treated as a person."
Because even if the disease is advanced, he says, the person is still there.
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