Honoring Dignity and Choice – Person Centered Care

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The ElderHub

 

BY DEBRA WOOD, R.N.

Memory and cognitive impairment occur more frequently in older adults, and providers are caring for more people with memory disorders. Providers are redefining how to care for people with dementia, embracing those people’s individuality and expanding their opportunities to continue living a full and enjoyable life.

“We are trying to provide a quality experience for our seniors, and it’s important to provide as much normalcy as possible,” says Angie Littke, director of nursing services at Deerfield Episcopal Retirement Community in Ashville, NC. She received the 2014 National Nurse Administrator of the Year recognition from the National Association of Directors of Nursing in Long Term Care.

“The smallest choice makes a difference,” adds Judy Palko, director of organizational learning at WesleyLife in Johnston, IA. “A person-directed approach focuses on recognizing, acknowledging and honoring the dignity and choices of the person with dementia.”

WesleyLife has rolled out a holistic approach to person-centered dementia care, with training, throughout its seven communities. Leadership tracks metrics, such as psychiatric medication use, activities on the households, level of cognition, performance of activities of daily living and completion of brain fitness activities, and holds communities accountable for meeting goals.

“Some organizations are moving beyond the concept of person-centered care,” says Michael Smith, president and CEO of the Alzheimer’s Resource Center of Connecticut in Plantsville. “We’re looking at how to enhance someone’s well-being and life when they have dementia with a new pattern of communication that brings a relationship with people with limited cognitive abilities.”

Smith advocates for an authentic relationship among care providers and those receiving care. He suggests professional caregivers build emotional memory with residents and not use pharmaceuticals to obtain the desired results.
Deerfield Episcopal Retirement Community
A Deerfield Episcopal Retirement Community resident and her family, along with the Deerfield team, celebrate the residents’ experience as the priority. (This photo won a contest sponsored by the American Association of Nurse Assessment Coordination.)

Sherry Dupuis, Ph.D., a professor in the faculty of applied health sciences at the University of Waterloo and co-principle investigator of the partnerships in Dementia Care Alliance, has researched expanding from the client-centered approach to authentic partnerships in which persons with dementia are viewed as equal partners in their health care. She added that the stigma associated with dementia leads people to often believe persons with the condition lack the capacity to be involved in their own care. But that’s not the case.

“Strong, compassionate, understanding relationships are at the core of strong dementia care,” Dupuis says. “But unfortunately many approaches to person-centered care focus on meeting the personal preferences and needs of persons with dementia but less time is spent on developing the compassionate relationships so needed in dementia care.”

Creating Emotional Connections
Undesirable behaviors are simply a way the person with dementia is trying to communicate. They act out, because they cannot articulate their needs.

“Caregivers must recognize the signals to manage the behavior and be tolerant,” says Susan Johnson, director of performance excellence at WesleyLife.

“We need to find ways for the person to express himself, so the person doesn’t need to act out to be heard,” Palko adds.

Caregivers may become frustrated with residents asking the same questions over and over, but with training they understand the resident really does not know the answer.

“We are in a world of connections,” explains Johnson. “For the person with dementia, every moment is new.”

While a person’s cognitive abilities may begin to fail, emotional memory, what makes one happy or sad and what brings comfort, remains strong, Littke explains.

“The resident knows what he or she is willing to do at any moment,” Littke says. “The behaviors are a result of the stimuli we have put in front of them.”

While a person’s cognitive abilities may begin to fail, emotional memory, what makes one happy or sad and what brings comfort, remains strong.

For example, residents often respond negatively to the bathing experience or incontinence care. Littke explained that’s because having someone undress you, wash you or clean your perineal area was not part of an adult’s usual experience. Those are things healthy adults do for themselves.

“We have to find a way to build a trust with them, so they believe it is OK that we are doing that for them,” Littke says. “It’s 100 percent in the approach, not just in the bath but in every other approach with the resident, because that’s where trust is built.”

Deerfield Episcopal instructs staff to approach residents with fewer words, not to overwhelm them with information, and to use distractive techniques, such as bringing over a photo of a dog, a child or something from the person’s former life or adding a second person who might apply lotion while the main caregiver changes a brief. Additionally, the employee assesses the resident prior to interacting as to what the person’s mood is and then to back off if it’s a bad time to approach for bathing or some other task. Staff members should not come too close and respect the resident’s personal space.

“It’s sensory awareness of the staff to the environment, the situation and the emotion of the resident,” Littke says. “Then they are able to build trust, achieve the task and develop the bond.”

Deerfield Episcopal also changed the bathing rooms so they appeared smaller and more spa-like. But the most important change involved educating the staff.

Several WesleyLife communities offer a private bathroom in the resident’s single room, helping the resident feel more enclosed and safe. Leaders have encouraged staff to ask family members when the resident usually bathed and try to match that schedule. Then caregivers focus on keeping the resident warm and making the bath gentle and relaxing.

“Word Up” Game Helps Spur New Thinking About Our Language
Alayna MacPherson
LeadingAge members try their hand at Word Up at the 2013 Annual Meeting in Dallas.
The LeadingAge Lingo Squad, a group of staff committed to increasing understanding of the importance of language in our work, continues to seek new ways to share information and engage members.

The Squad’s charge is to facilitate dialogue and enhance awareness among LeadingAge staff, members, business associates and state partners about the importance of language in our field.

Over the last year and a half, the Squad gathered input from members and staff, compiled a library of resources and articles, and created the game LeadingAge Word Up. The family feud-style game was designed to help individuals and organizations question the vocabulary we currently use in our field.

More
Delivering Person-Centered Care
“We are pushing person-centered care to the furthest of capabilities in a skilled nursing [community],” Littke says. “We let the resident or power of attorney inform us about the resident’s past life, preferences, personality in as much detail as possible, so as we deliver health care, nursing services, activities and socialization, we can customize it as close to what would be normal if they were not living in our [community].”

WesleyLife also finds out about the resident’s former life and what the person enjoyed before moving in and tries to create activities the resident would enjoy.

A person-centered approach requires significant training and retraining of staff members. Gone are the days of doing what works best for checking off a list of tasks. That’s been replaced with tailoring care to the care recipient’s preferences.

“We look for those moments when being here is better than home, like when they were on vacation or at a resort,” Littke says. “We give them the emotional feeling that they are taken care of and all is good.”

Deerfield Episcopal enjoys a “hotel feel” but she says it takes more than that to bring everyone together to deliver a positive experience, for the residents and staff.

Motivating Staff
“When you get to the point your staff is accountable, proud and can see value to what they do during the day, turnover and bad attitudes disappear and are replaced with empowerment, ideas and energy,” Littke says. “We continue to raise the bar, and I have yet to find the maximum.”

Littke began by focusing on the staff and their experience, with the hope that would, in turn, improve resident care. She established an open-door management process and reviewed every process to ensure leaders were not asking people to do more than what was humanly possible. She looks at mistakes as learning experiences and asks front-line staff for ideas to implement new initiatives.

WesleyLife hires with an eye toward retention. Leaders conducted focus groups to assess what characteristics successful caregivers in memory support possessed. Flexibility, creativity, the ability to roll with the punches and get into the world of their residents, to appreciate individual personalities, and to pay attention to safety are all critical elements of building positive, nurturing relationships with the residents. In addition, several WesleyLife communities interview within their memory-support households to ensure the candidate will be a good fit for the residents.

“We look for the right people and then do our best to keep them,” Johnson says. That includes continual training and improved communication among caregivers.

Flexibility, creativity, the ability to roll with the punches and get into the world of their residents, to appreciate individual personalities, and to pay attention to safety are all critical elements of building positive, nurturing relationships with the residents.

Deerfield Episcopal has conducted sessions in which staff members are encouraged to think about how they would feel if they were put in the resident’s position. In some cases, such as feeding, they feed each other to gain a greater appreciation of what that experience is like.

“That feeling stays with you, even if you have lost your cognitive abilities,” Littke says.

Stimulating Minds
WesleyLife has begun a brain fitness program in its households. When nursing staff found it hard to create the time to complete the programs with residents three times per week, the organization recruited and trained volunteers, some from other departments, to complete the 20-minute sessions with residents.

“Dementia affects more people than we know,” Palko says. “If team members outside of memory support can experience this and interact, it is a plus. It creates a connection.”

Volunteers now conduct about half of the brain fitness sessions, freeing nursing staff to deliver personal care.

Separate or Together
One of the big issues in memory care at the moment is whether to comingle cognitively intact with cognitively impaired residents. Both sides make a strong case for their position. The decision to comingle or not affects not only residents but care providers.

WesleyLife offers separate memory care households, where patients can wander in a safer environment. However, Palko understands that interaction with residents with normal cognition could provide stimulation to the person with dementia; however, it also could pose problems if the cognitively impaired individual is not accepted.

Many older people fear developing Alzheimer’s disease and often want to avoid people with dementia. They may not develop a tolerance for sharing their space with people who upset them, and the cognitively impaired individual may sense that.

With a separate unit, those with limited cognitive abilities are able to focus on what they can do, versus what they cannot.

In many of the WesleyLife memory support households, activities are open to everyone in the community and, Johnson reports, residents from independent and assisted living regularly participate in some of the events, such as jewelry making.

“People need to be open to appreciating abilities rather than defining limits,” Johnson says.

Although Dupuis understands the stigma and misunderstandings associated with dementia, and the fear cognitively intact people may experience when living with a cognitively impaired person, she does not favor segregation.

“This [stigma] causes much fear, harm and suffering to persons living with dementia,” Dupuis says. “What we need to do is raise awareness about dementia and change perceptions of it, so that people are more understanding and compassionate and willing to support people with dementia in strong, interdependent relationships.”

Deerfield Episcopal decided on a combined unit after studying the issue in other continuing care retirement communities. Separate units present bed-management issues and with so many patients suffering from dementia, determining which ones would receive care on the special unit would require establishing criteria and administering it fairly. As residents’ conditions changed, that may result in moving back and forth between the units.

Additionally, Littke says she was concerned about the staff experience when assigned to a dementia care unit.

“Although you could train individuals more intently on managing patients with dementia, there was something lost when you took those that had more cognitive capabilities out of the equation in terms of the staff experience,” Littke explained. “My staff is so fed by the few interactions with residents that can give clear feedback, bring a joke or thank them. If you work with a population that can never thank you or connect or understand, your work experience is altered.”

Littke found that when she trained all staff to work with the cognitively impaired, the employees and the residents had a better experience. Challenging situations become more palatable to employees, because they are balanced with fun moments with more cognitively intact residents.

“Although you could train individuals more intently on managing patients with dementia, there was something lost when you took those that had more cognitive capabilities out of the equation in terms of the staff experience. My staff is so fed by the few interactions with residents that can give clear feedback, bring a joke or thank them. If you work with a population that can never thank you or connect or understand, your work experience is altered.”

With a combined unit, Deerfield’s staffing is high enough for someone to take a resident outside, regardless of cognitive ability, and residents who wander have more space to explore. The skilled unit overcame cognitively intact residents’ fears of a confused person wandering into their rooms by installing custom-designed Dutch doors that remain closed at the bottom but open at the top.

“As long as the bottom half of the door is latched, cognitively impaired residents cannot figure out how to open and many do not even try,” Littke says. “We have few complaints or concerns about wandering or other people being in their space, thus reducing their fear greatly.”

Separate seating areas in the dining room exist. Also, some more cognitively intact residents tend to spend more time in their rooms. Many others feel valued and needed as they become helpers and mentors, adding meaning and value to their lives.

“We have helped many cognitively intact resident and staff become more tolerant and understanding of those with cognitive impairments,” Littke says. “Keeping both cognitively intact and cognitively impaired residents together in our facility has helped to make living and working in long-term care a rewarding experience for everyone.”

Whether cared for in separate or blended units, residents with dementia deserve being treated with respect and dignity. Person-centered care requires getting to know each resident as an individual and tailoring care to his or her needs. Through the connections made, a relationship develops with caregivers who can provide individualized services, focused on what matters most to each person

http://www.leadingage.org/Honoring_Dignity_and_Choice_Person-Centered_Approaches_to_Dementia_V4N5.aspx

October 11, 2014 at 3:58 am #1051
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