Reshaping the design and delivery of dementia care

Sometimes it’s as if time and space are suspended when Hollie Fowler steps into Prestige Care’s memory unit, which is something that Fowler welcomes on a day when her role as an executive seems too stressful.

Fowler—who serves as the senior director of product brand and development at the west coast long-term living community—doesn’t look at the dementia and Alzheimer’s residents as suffering from a disease. Rather she sees them as valuable human beings simply choosing to live in their past, and on more than one occasion she has chosen to join them on their adventures.

“There was a time when I walked into one of our communities and there was a little bench at one side and a couple of gals there who had been sitting there for quite a while,” Fowler says. “I walked over and said, ‘What are you girls doing?’ and they said, ‘We are waiting for a bus.’ And I said, ‘Oh, well can I wait with you?’”

Communities like those run by Prestige know that successful memory care is centered around the person rather than those caring for them. Previous care techniques—such as demanding residents to participate in a one-size-fits-all group activity, restraining unruly residents or attempting to orient individuals to the current date and time—have gone by the wayside as research as proven them ineffective and harmful.

PERSON-CENTERED CARE

Long-term care communities are discovering new ways to meet the needs of memory care residents that reduce unwanted incidents, such as falls and aggressive behavior, and breathe new life into the hearts and minds of the individuals living there. The transformation can be costly—with extra staff training and changes to a community’s physical layout—and requires the commitment of a community’s executive staff as much as its pocket book.

“We need everyone to be moving toward that person-centered care,” says Cindy Keith, RN, a certified dementia practitioner who consults with communities. “It is expensive and there is a lot of resistance from staff because they don’t like change, but the payoff eventually outweighs it.”

Dementia is a disease that causes a decline in cognitive performance. There are several forms of dementia, but Alzheimer’s disease is the most common. Alzheimer’s disease accounts for 70 percent of the elderly with dementia and affects one in eight older adults in America. According to the Alzheimer’s Association, it is the sixth-leading cause of death in the United States.

The need for adequate memory care will only increase over the next two decades. The costs of caring for people with dementia in the United States in 2010 were between $159 billion to $215 billion, and those costs could rise dramatically with the increase in the number of older people in coming decades, according to estimates published this year by researchers at RAND Corp. and the University of Michigan, Ann Arbor. The researchers found these costs of care comparable to, if not greater than, those for heart disease and cancer.

Facilities that refuse to invest in memory care programming could face significant challenges as individuals become more educated and particular about the type of facility they choose for their loved one.

LIFE-AFFIRMING THERAPY

Prestige, which owns 72 long-term care facilities mostly in the western part of the states, saw the changing tide of memory care about five years ago and decided to take a hard look at its what it had to offer. “We wanted to make sure that we were looking at the most recent advancements, techniques and programming,” Fowler says.

Prestige engaged renowned memory care expert David Troxel, MPH, to evaluate its program. It also conducted numerous focus groups with families considering long-term care for a loved one. Prestige’s research found that safety and security were a top priority for families.

“They worry about their loved one and worry because they can’t care for them,” Fowler says. “This was a truth that wasn’t new to us, but we wanted to go above and beyond just offering a secure environment. We wanted to offer a program where you feel like you can enrich lives even while they are still struggling with the disease and that is not something that is commonly used.”

The result was Expressions, a program that puts the resident in the center of the care. Prestige adopted Troxel’s “Best Friends” methodology where staff spends a lot of time up front getting to know each resident—their likes and dislikes, but more importantly their history. “Because those with Alzheimer’s and dementia tend to live a little bit in the past, it is important for us to understand where they came from and what their life was like—what they did for jobs and what kind of hobbies they liked,” Fowler says.

Expressions has five programming areas: healthy, tasty, artistic, educational and spiritual expressions. Each area is carefully crafted to meet the changing needs of those with memory care. For example, healthy expressions require staff to encourage residents to exercise in some form or another twice daily. Research has found regular exercise delays the onset of Alzheimer’s disease and its progression.

Staff receives extra training to not only meet clinical needs, but also goals set out by the Expressions programming. Adequate understanding of the disease as well as the personal history of each individual has transformed the environment in Prestige’s memory units, Fowler says.

ADVANCED UNDERSTANDING

In 2011, the Centers for Disease Control and Prevention (CDC) released a report detailing the advancements that had been made in the previous 50 years in disease research and prevention. While the country had made admirable strides, the CDC outlined many diseases that still needed significant attention. Alzheimer’s disease was among one of those. Thankfully those involved in the research of Alzheimer’s aren’t willing to rest and Dr. Govind Bharwani, PhD, is one of them.

In 2011, Bharwani implemented a new dementia therapy program called Behavior-Based Ergonomics Therapy (BBET). The customized program—using music, video, stimulating and memory prop therapy—has proven to reduce resident falls and use of anti-psychotic medications.

This past year, Bharwani took BBET a step further when his research into cognitive neuroscience revealed new ways to reach residents in the later stages of Alzheimer’s disease. Alzheimer’s disease is often divided into seven stages—with seven being the latest. BBET worked well with residents in stages one through five, but those in stages six to seven were often too hard to approach with therapy.

Bharwani’s research showed that the right brain is sensitive to touch as the left brain deteriorates significantly as the disease progresses. Bharwani used this information to help staff with residents who are often difficult to engage in therapy. Staff who see a resident becoming agitated are now coached in using aromatherapy or massage to calm a resident and prepare them for therapy. For example, a resident who is too agitated to listen to music may first be calmed by gently rubbing their left hand for one minute.

“The results are tremendous,” Bharwani says. “Residents are calm and listen to their music. There is no longer any moaning, shouting, wandering or combativeness.”

Pine Village, an LTC facility just outside Wichita, Kansas, can attest to the therapy’s success. In 2012, Jenna Lehrman was hired as the community’s new behavioral health specialist and asked to create more activities for the memory care unit.

Lehrman asked Bharwani to implement BBET, including the new strategies for those in the later stages of the disease. Within a year of implementing BBET, Pine Village experienced a 40 percent reduction in the use of PRN behavioral medications. The environment nearly changed overnight after BBET was implemented. The staff is also able to do things with those on the unit that would have been previously unthinkable.

“Recently we took everyone in our memory care unit and their families to a zoo that was 20 miles away from here,” Lehrman says. “We were able to that because we could engage them and keep them calm. Before it would have been too much and too scary to handle.”

CONTINUING THE COURSE

Keith, an industry expert who has authored books on dementia care, says the industry has come a long way with how it cares for those with the disease.

“Every single thing we were taught on how to care for people with dementia and Alzheimer’s has been proven wrong,” says Keith who spent much of her past as a long-term care nurse. “First of all, we were taught that you orient them: ‘No, today is not Thursday. Look at the calendar.’ ‘No, you are not 32 years old, you are 92 years old.’ It was horrible. And another thing was restraining them, which thankfully we have stopped that.”

Memory care units are much different today and the workers are learning to orient themselves into the world their residents have created. It’s a slow, but important change and what we see today is just the beginning. Or at least, that’s what many hope.

“It’s getting better but we have a long way to go,” Keith says. “The reason it is getting better is because of all the knowledge we have gained.”

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