Nurse leaders improve dementia care

The intense, eight-hour dementia training course for the staff at Presbyterian SeniorCare’s Woodside Place might seem a little chaotic at times for anyone who walks by and peeks inside. At any given moment, there may be a staff member pacing the room, snatching up someone’s cell phone or attempting to open a pill bottle while wearing bulky gloves. There’s constant movement, noise and plenty of confusion. But for Cheryl Covelli it’s a beautiful scene. “My theme for the day is, ‘If you think it is hard for you, how do you think it is for them?’” Covelli says.

For an entire day, Covelli turns program participants into residents. She makes them incontinent, arthritic and hearing and seeing impaired. She sporadically instructs nurses to walkaround the room aimlessly, while looking for items they can take from others. The goal is to give staff an idea of what it is like for people to live with a disease yet lack the ability to communicate how it is affecting them. The result is always the same: “Staff members say that when they experience it they understand it,” Covelli says.

Eight years ago, Covelli was tapped by Presbyterian SeniorCare when it was looking to revamp its dementia training program. Creating a top-notch, effective program was extremely important for the long-term care (LTC) community to maintain its national reputation as a leader in memory care. Covelli, who started at the community as a part-time LPN, has risen to second-in-command behind the administrator. She was the person SeniorCare needed: A person with longevity, creativity and a proven track record.

“Part of the reason I have my skill set is that I have lived this for 22 years, five days a week,” says Covelli, director of nursing for Woodside Place. “I could spend hours telling you stories of how I have learned to problem solve and deal with behaviors. It’s that type of experience that is the key to helping this training program to succeed.”

One in nine people age 65 and older has Alzheimer’s disease, and according to the National Alzheimer’s Association, at least half of the residents in long-term care suffer from dementia. It’s a disease that has always existed in LTC settings, but one that is finally being given the attention it deserves. Communities are responding to the residents’ growing needs by treating dementia as a primary concern, not a secondary health issue. As a result, organizations like Presbyterian SeniorCare have birthed dementia-dedicated communities like Woodside Place that highlight holistic care for individuals struggling with the disease.

Such changes don’t come naturally or overnight, which is why nurses play such an important role in helping to foster and champion continued change. Communities can build dedicated dementia units, but it takes the proper training to make sure the staff is able to carry out the culture change needed to make it a success.

Improving dementia care

Robin Arnicar, RN, CDP, CADDCT, CDONA, FACDONA, president of the National Association of Directors of Nursing Administration in Long Term Care (NADONA), says nurses possess the expertise needed to train others in how to care for dementia patients.

“Our biggest role in memory care is to educate staff so they understand the unique needs of a memory care resident,” says Arnicar, who is also an active director of nursing for Erickson Living’s Renaissance Gardens at Charlestown Care Center. “I have learned that when you meet one person with dementia, you have met one person with dementia. They may share similar symptoms, but they are unique and different from one another.”

Nurses need to help staff understand the danger in stereotyping dementia patients, adds Arnicar. The challenge, however, is getting staff to look past an individual’s behaviors to understand his or needs.

“Behaviors are really a resident’s way of communicating with us,” she says. “Our goal has to be to help staff and even family members understand that a behavior is really their loved ones’ way of trying to tell us something.”

Common behaviors seen in dementia patients such as agitation, wandering, sundowning, depression and hoarding are all things Covelli covers in her training at Presbyterian SeniorCare. She not only has a staff member act out the behavior but then walks participants through the best way to respond. The goal is to get staff to look beyond the behavior to recognize the underlying need and find a way to solve it.

At Woodside Place, one of Covelli’s favorite examples of resolving behavioral issues involved the community’s youngest dementia patient. The 56-year-old attorney arrived at the community with an arrogant attitude and would only converse with administration. As time went on and his ability to function on his own diminished he found himself in a place where feeding himself was a struggle.

“I was watching him one day and he wore 80 percent of the food and actually ate 20 percent,” Covelli recalls. “If the staff offered to help he would become angry and throw food on the table. Inside, he knew what he wanted. I suggested that staff butter his bowl and place the hot food inside. When he lifted the bowl, the food slipped out easily. The next time I saw him he was wearing 20 percent of the food and ate 80 percent.”

Open closed-door dementia wards

Dementia care has evolved over the decades to extend beyond keeping someone safe and alive to providing what is needed to fully live the life he or she has left. “It used to be safety, safety, safety,” says Arnicar. “It’s not that safety isn’t important. In fact it is as important now as ever before, but it is just one piece of providing memory care. We are getting away from the medical model to one that allows residents to enjoy life.”

Memory care communities are now treated as the residents’ home. Nurses encourage family members to set their reality aside and step into their loved one’s world for an hour or two. “There was a man in our community who was convinced that he was 40 years old. In his world he wasn’t an elderly man in a nursing home, but a husband coming home from work to see his wife,” says Arnicar. “And every time his wife would come she would try to remind him over and over that he was retired and that their children were grown. I stopped her one day and explained that the disease didn’t allow him to live in her world and I encouraged her to live in his. The next time I saw her I asked her how it was going and she lit up and said, ‘We have so much fun! We are talking about things we haven’t talked about in years.’”

Part of the design and purpose of SeniorCare’s Woodside Place was to set people free. Staff are trained to give residents as much freedom and choice as possible as long as they are not hurting themselves or anyone else. The community’s three-acre lot is so secure that exterior doors are left unlocked when weather permits, allowing residents to explore the outdoors and enjoy the warmth of the sun. Mealtimes are served at the residents’ leisure, and in some cases, multiple times an hour.

“If you want to eat breakfast at 5 a.m. and then return to eat more at 8 a.m. we don’t say, ‘Well, you have already eaten,’” Covelli says. “We say, ‘Well, sit down. What can I get you?’”

The shift is part of creating person-centered care where staff are encouraged to treat residents in the same way that they would if they were visiting someone’s home. This type of change, however, wouldn’t have taken place if not for the help of nurses.

Nurse champions

“Nurses have always been champions and advocates for dementia patients and their families, but I think that in recent years it is becoming more obvious to society, policy makers and physician organizations,” says Ruth Lopez, PhD, GNP-BC, associate professor of the school of nursing at MGH Institute of Health Professions. “These groups are seeing how important nurses are in the care of those with dementia, and that the care is so complex that one healthcare provider alone cannot do it.”

Since 1982, has spent most of her time focused on geriatric care. At one point, she provided care as a nurse practitioner for 800 patients within 12 different nursing homes. She transitioned her work from the clinical side to research when she realized that dementia care, particularly near the end of life, had room to improve.

Her research has given her a front row seat to hear how nurses feel about their role in long-term care. What she has found is that while a nurse’s role has increased in the decision-making process, many still don’t believe they have the experience and skills needed to help families and residents make educated decisions about their loved one’s care

“I encourage nurses to take responsibility and to speak up and advocate for families and patients,” says Lopez. “Sometimes nurses are reluctant."One of Lopez’s studies spoke to the important role nurses play on the trajectory in the life of a resident with dementia—from the onset of the disease all the way to end-of-life decisions.

“Many of the nurses I interviewed said it was against the law for them to walk a family member through the options in regards to feeding tubes,” she says. “I told them that it is not against the law and that they have a responsibility because they know what is coming next. What they are able to share is based on years of experience and is not personal opinion, but critical judgment.”

Nurses have what it takes to champion change for dementia patients. They are on the frontline of patient care and have the experience needed to guide training and education. Above all, they have the compassion and desire to walk residents through the many phases of dementia. Just ask SeniorCare’s Covelli what’s kept her in the industry for so long.

“I fit in. One day I’m going to live here,” she says with a chuckle, but then adds, “I like to help people and it seems to fit. I love to problem solve and sometimes the simplest efforts truly make your day. Like helping an agitated person who can’t speak up and helping him or her to become completely independent.”

Julie Thompson is a freelance writer based in Dayton, Ohio.

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