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The author of Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, G. Allen Power, MD, posted a photo on social media of a door in a dementia unit decorated to resemble the corner of a lovely room with a bookcase and flowers in a vase. At first glance, it is visually appealing. But the truth is, said Dr. Power, it is still a door. Instead of disguising or locking doors to keep people from leaving, “We need to figure out why they want to leave, and we need to think about the needs we’re not meeting,” he said.
Even though facilities have embraced person-centered care and made efforts to address residents’ wishes, habits, and preferences, concerns about safety — while valid — often override personal choice. “We need to do a better job of balancing safety and resident rights. Too often, we automatically default to lockdowns, especially for residents with dementia,” Dr. Power told Caring. “As long as we do this, we’ll never find the nuanced ways to get past this.”
It is common to look at the “bad side of risk,” that is, the worst-case scenarios of the possible implications of an action such as leaving doors unlocked. “We don’t consider the risk of what potential damage the locked doors can do. Until we look at both sides, we’re not doing all we can do for our residents,” said Dr. Power.
The Fallacy of Falls
Dr. Power shared a story he heard about family members seeking an assisted living facility for their mother.
“They found a place with a nice walkway and a beautiful garden, but the doors leading to them were locked. They were told that no one was allowed to go outside anymore after a resident fell there,” Dr. Power said. He stressed that falls and other accidents should never be taken lightly. However, “locking the doors to the outside as a response to a fall makes no sense from a rational standpoint. We don’t lock people in their rooms because someone falls in the hallway. The things we do often are done out of a misguided sense of what we think should happen.” Instead, he suggested, “We need to go back to the core view of dementia — by looking through the eyes of these patients” and understanding how they view the world.”
“We need to recognize that we all walk around freely every day. No one stops us. The desire to move about freely doesn’t go away just because someone has dementia and is in a nursing home,” said Dr. Power. “We need to create a safe environment where people can move freely, but have their needs met so they aren’t compelled to leave due to distress or lack of well-being.”
The solutions are there, but they require true commitment over time and not just lip service or the “individualized bossing” that sometimes passes as person-centered care. “We need to address the root causes of the distress that make people want to leave,” Dr. Power said. For example, he pointed to the Green House Project at St. John’s Living in New York. “This is a place where people largely don’t try to leave anymore. Staff know the residents and their rhythms. They take them for walks, to the grocery store, and to local places of interest. When you do these kinds of things, people don’t have the urge to get away.”
Beyond Locked Doors
Amy Ivey, executive director at Mississippi-based Dunbar Village Nursing Home (SentryCare, Inc.), always had an issue with locked doors. Amy Ivey, executive director at Mississippi-based Dunbar Village Nursing Home (SentryCare, Inc.), always had an issue with locked doors. She believed that keeping people happy, comfortable, and engaged — not locking them in — would prevent incidences of elopement and wandering. Unlocking the doors to her community’s dementia unit wasn’t an easy sell, but an emphasis on preparedness eased staff anxieties.
Interestingly, the first one through the unlocked door wasn’t a person — it was one of the facility’s resident dogs. But the residents soon followed. Unlocking the door didn’t just increase accessibility, it opened minds. “There was a stigma with the diagnosis beyond that locked door. When you lock people behind a door, it says that we don’t trust people to come out. We try to sensitize our care partners that they need to look beyond the diagnosis, and unlocking the door helped with this,” said Ms. Ivey. “The door was a barrier. Now we are one whole village.”
Although facility administration and staff were hesitant at first, it didn’t take long for them to see the benefits. For example, others in the facility are now going into the memory care unit. “There is a nice courtyard area off of this wing, and people from throughout the community are now going out there and exploring it,” Ms. Ivey told Caring. She added that there are a number of activities held in the memory unit, and now more residents are participating in those.
Those who seemed eager to get out when the doors were locked haven’t used the unlocked doors for escape. “Some will just look out, and come back,” she said. She suggested that the impact of unlocked doors and open space needs to be studied further. “Previously, the anxiety level in the unit was high. Now the whole village is calmer than it was. The anxiety has gone way down.”
“Every behavior is a form of expression. It is important for care providers to understand this,” said Jean Makesh, CEO of The Lantern communities in Ohio. “We’ve found that if we address the source of the behavior, we can eliminate that behavior. The first thing we need to do is find a way to process sensory impulses in a therapeutic manner.” Mr. Makesh said that providers need to focus on creating a “humanized environment” with a person-centered approach. “As dementia progresses, patients connect more with their distant past. If a facility looks like a 5-star hotel and the person grew up on a farm, we have already created a conflict,” he said. He noted that facilities can work to provide each individual with environmental elements that are familiar and comfortable to them.
Getting to know each resident requires more than a brief discussion with the resident and family on admission.
“We developed a detailed questionnaire designed to get a full understanding of each person,” Mr. Makesh told Caring. “It’s not standardized, but it has been helpful to us.” The tool includes questions such as “Who is your best friend? What makes him or her your best friend?” and “What are your successes? What advice would you give young people?” If the resident’s dementia is too advanced at admission to answer the questions, Mr. Makesh and his team involve the family members. “We often get different answers from family members when the person’s memories are disrupting his or her response process.”
Family members may not know what their parents or grandparents were like when they were young. “Recently, I took my children with me to my college reunion. My old classmates were telling my kids that I was fun and liked to party. They said, ‘No way was our dad like that.’” Children get to know their parents in that role, he noted, and they may not fully appreciate who they are as people. “As we go through this questionnaire, we get a more complete picture of the client, and we learn about things that make caring for them easier, better, and more fun,” Mr. Makesh said.
At the same time, he said, the importance of compassionate staff and quality care can’t be underestimated. Even if residents don’t recognize staff or family, they can find some comfort in being in a place where they are cared for and treated well, and where they feel safe and comfortable.
Mr. Makesh and his team are using other innovations to reduce wandering, agitation, and restlessness. For one, they are trying ceilings that go from day to night using LED lights that are linked to a clock, lightening or darkening them according to the time of day. This technology is still evolving, and the benefits still need to be studied. However, it is designed to encourage residents to be active during daylight hours and retire when it is dark.
Elsewhere, Mr. Makesh made a decision that some might consider controversial. He mandated that there wouldn’t be any televisions in common areas. He wanted these areas to be open and inviting — places that encourage interaction and conversation. He also purposely designed private rooms that are smaller. “I want people to feel motivated to spend more time out of their rooms,” Mr. Makesh said. He hopes that such efforts will encourage residents with dementia to feel engaged and content and, therefore, less likely to wander or seek exit.
“We as humans are always looking for a great experience,” Mr. Makesh said. When residents feel like they aren’t having this kind of experience, they feel agitation and restlessness. Medical directors and staff might want to consider creating a comfortable environment that gives residents fewer reasons to escape — but when appropriate allows them a little more room to explore. This article was previously printed in the January 2017 issue of Caring for the Ages. DOI: 10.1016/j.carage.2016.12.012
In the following excerpt from Dr. Power’s book, Dementia Beyond Disease: Enhancing Well-Being, he talks about how locked doors can cause distress:
“Imagine that the person feels a need to leave because of one of a variety of reasons — that her children may need attention, that he has to go home from work, that she needs some exercise and fresh air, or simply that this place just does not feel like a place where he wants to stay all day. What will the reaction of each of these individuals be when confronted by a locked door? ‘You cannot go to your children,’ ‘You cannot leave work,’ ‘You cannot get any fresh air,’ or ‘You must stay in this place that you do not like.’
“So once again, we have a staff-centered solution that actually decreases the person’s sense of security and increases both the level of anxiety and the very desire to leave as well! The person returns repeatedly to the locked door, bangs on the door, calls out for help, or otherwise expresses her distress. It is another self-fulfilling prophecy, as the ‘special care unit’ proves to be the home of the ‘most agitated residents.’”
Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.