Translating the Language of Confusion

More than 5 million Americans are afflicted with Alzheimer’s disease, which causes about 70 percent of dementia cases. Learn about progressive local facilities that make life more enjoyable for these patients, by looking at life from their point of view.

Aunt Libby forgets that her husband passed away 10 years ago. Mom is always losing her keys and often accuses her daughter of stealing them. More and more, Grandpa confuses his grandson with his grown son.
Each of these people is exhibiting warning signs of Alzheimer’s disease, a progressive, degenerative disorder which attacks brain cells and causes, in its early stages, symptoms such as memory loss, personality changes and confusion. Currently, more than 5 million Americans are afflicted with Alzheimer’s disease; it affects another 11 million caregivers and family members.

“Alzheimer’s disease is a scary, horrible disease, for the person and the family,” says Elena Godfrey, LCSW, Care Navigator for the Rockford, Ill., office of the Greater Northern Illinois Chapter of the Alzheimer’s Association. “Although it’s just one of several types of dementia, it accounts for 60 to 80 percent of diagnosed cases. As with anything to do with the brain, we have a lot to learn about this disease. Right now, the greatest risk factor appears to be age. And projections for the future are frightening.”
As people’s longevity increases, so does the number of those diagnosed with some sort of dementia. Luckily, many local assisted living facilities have adapted to include units dedicated to Alzheimer’s and dementia care, or been created solely to house and help those afflicted. While little is known about causes and prevention of Alzheimer’s disease, much progress has been made in the care and treatment of its victims. Several forward-thinking facilities are embracing this progress.
“We speak Alzheimer’s here,” says Bernie Marinelli, CEO of Anam Care, 8104 Sayer Road, Rockford. “We speak the language of confusion.” Specializing in Alzheimer’s and other dementias that can render people unable to live at home, Anam Care was conceived and built by Marinelli and Dr. Juliette Kalweit six years ago. It’s currently at its maximum capacity of 24 residents.
The Atrium of Rockford, 2885 McFarland Road, a LifeHOUSE community, was recently state-designated as a dedicated dementia facility, and has 25 residents. Its maximum is 40. Full-time staff includes three CNAs, an activity director and an RN, along with a chef and two cooks. Other part-time staff is made up of CNAs and LPNs.
“The facility itself has been here 15 years,” says Becky Lichty, Atrium manager. “LifeHOUSE Properties bought it four years ago and began the transition to dementia care. We had a ribbon-cutting for our dementia designation on Sept. 15.”
Loyalton of Rockford, 1545 Temple Lane, a part of publicly-traded Emeritus Senior Living, has 19 residents on its Memory Care Unit, and will accept up to 22. “We don’t try to correct them,” says Michelle Slack, executive director. “We join their journey.”
“These memory and behavior issues can be complex,” says Vicki Dean, Memory Care Unit program director. “We need to be more patient, take time to know the person, and then we learn to read what the symptoms truly mean.”
Marinelli, a Rockford native, is a registered nurse with a health care background that includes the emotional as well as the physical care of patients at almost every life stage. She began as a pediatric nurse in mental health in Boston, moved into behavioral sciences for female adolescent eating disorders, and then became certified in pain management for hospice care. She’s worked in long-term senior care since the 1970s, and was administrator of a nursing home in Wisconsin that helped to change the face of Alzheimer’s care.
“The accepted method of dealing with Alzheimer’s patients used to be to try to bring them back to reality,” explains Marinelli. “But we know now that this only causes more problems. Imagine if you’re already confused and upset, and then, the people whom you most trust are telling you that your perceptions are totally wrong. Naturally, you’re going to become even more upset and distrustful. So, we live in their world.”
Marinelli says her “think-tank” staff in Wisconsin figured this out very quickly and utilized many new techniques, some of which are now standard. Accommodations she and staff made included using full-spectrum light therapy to try to counteract Sundowner’s Syndrome, an ailment that causes confusion after sundown, and doing away with institutional décor to create a familiar, home-like environment. In one instance, they designed an elevator to resemble a fire station, for a former fire chief who often would respond to “fire alarms” in the middle of the night.
“We monitored his movements, of course,” Marinelli says. “And it made him feel useful. Instead of fighting his reality, and trying to force him to accept ours, we became players in his world, until we were able to gently redirect him back to his room.” Similarly, a former policeman was given a steno pad, so that he could issue “tickets” to “lawbreakers.”
“Many people have this perception of ‘cute old Alzheimer’s,’” says Marinelli. “And these scenarios do seem humorous, on their face. But imagine if this was your father, and you were trying to run a household, raise children, go to work. It’s impossible to stop normal activities to indulge your loved one in these alternate realities.”
For example, if you refuse to yield to a policeman – even a retired, delusional one – his response could escalate to include physical force. That’s when such behaviors move beyond cute and humorous.
Loyalton’s Slack, with more than 30 years in health care, also has a diverse background, ranging from EMT and paramedic to psycho-social coordinator at a retirement facility in McHenry County. Here, she was part of a team that started one of the first Alzheimer’s units in that area, back in the 1980s. Having worked with Alzheimer’s patients for the past 20 years, six of those at Loyalton, she’s seen the positive results from changing the method of care.
“Emeritus has a program called ‘Join Their Journey,’ and that basically explains the approach,” she says. “We need to get into their world, and adapt to their routines, rather than try to make them fit into ours. For example, we had a gentleman who spent his life working on the night shift. So we adjusted his meal schedule and allowed him to stay up all night and sleep during the day. Would you want to be a grown man and have someone you don’t even know telling you when you had to go to bed? Previously, these folks weren’t getting any grounding or validation. They’re still people, and they still want to be treated like adults.”
One important tool is knowing the person’s past – hobbies, interests, traumas, high moments. “We ask family members to create a ‘Life Story’ for our residents, and every staff member has to read it,” says Dean. The same is true at the Atrium and Anam Care. “That way, we can identify triggers and determine activities. If one of our residents mentions a name, for example, we’ll know who that person was, the role he or she played, what emotions or issues might be surfacing.”
This also has allowed for the creation of interactive “Life Stations” in the Memory Care Unit.
“We’ve set up areas where residents can stop and take part in or reminisce about activities they like – woodworking, laundry, gardening, even a military center,” explains Dean. “One of the most popular is the Baby Station, with a crib, baby dolls and diapers. We even have an air freshener plug-in that smells like baby powder. These Life Stations help them to remember the important things in their lives.”
At the Atrium, Josephine, a resident for several years, recently was joined by her sister, Priscilla, who now also lives there. Ellie, another longtimer, will celebrate her 100th birthday in November.
“We have some pretty special people here,” says Lichty. “Betty’s husband was the bus driver for the Rockford Peaches. Trudy was a registered nurse.”
As with the other facilities, staff members adapt to the residents. Larry, looking dapper in a cardigan sweater, believes he’s on a cruise. As residents gather for lunch, he asks to dine at the captain’s table, and is seated accordingly. Josephine refuses to move to her regular table, despite reminders that Priscilla is there. Buzz, who exiled himself earlier because he knew he was being rude, is persuaded to rejoin the group.
Lichty repeats what seems to be the mantra for dementia care: “We have to live in their world. Sometimes, they get agitated or upset. We don’t correct them. We just do what we can to redirect them and keep them feeling safe.”
As Lichty finishes speaking, Josephine concedes to being moved, and sits down next to her sister at their regular table. “There’s no road map for treatment,” says Lichty. “It’s based not just on the type of dementia but on the individual.”
At each of these facilities, medications are administered only to treat specific conditions, such as anxiety or obsessive-compulsive disorder, not to sedate.
“Occasionally, we’ll have a ‘Drug Holiday,’” says Anam Care’s Marinelli. “We consult with their physicians, of course. But since there are no time-proven medications that slow or stop progression, treatments need to be more holistic. This person is 89. Will skipping her cholesterol med for one day affect her longevity? Probably not. We find that socialization, exercise, diet and cooperative living go a long way in improving length and quality of life.”
Routine and stability are vital to the residents’ sense of well-being, and dealing with the same staff members is part of that. “Almost everyone on staff has been here for five or more years,” says Dean. “It takes a special group of people to work with those suffering from this illness.”
Touring the Memory Care Unit, Dean isn’t surprised to see Brandi, a CNA, even though it’s her day off.
“My boyfriend, who’s leaving town tomorrow, wanted to see where I work and meet some of the residents,” she explains. “While we were here, one of my clients needed help going to the restroom. How could I say no?”
“Everyone on staff here is dedicated, or they wouldn’t be here,” Dean says.
Marinelli strives to bring together people of like minds to work at Anam Care. “Our employees are told that they will be required to make a commitment to a relationship when they come to work here – to the family as well as the clients,” she says. “Everything depends on staff selection. Basically, we hire for the heart, and train for the rest.”
Commitment means no cell phones, no friends bringing in supper – just total focus on the job and the residents. But the patients aren’t the only ones who require special attention. Caregivers and family members have their own issues and needs.
Several facilities have daycare options, to provide caregivers needed respite. At the Atrium, it’s offered twice a week, and two regulars are former golfing buddies who still compete on a putting green outside on the terrace. Sometimes, daycare visitors become full-time residents.
“When we first bring someone in, it can be harder on the family than on the patient,” says Lichty. “It’s sad to see your parent or loved one revert to childhood.”
To help to ease the transition, at the Atrium, potential residents first are brought in for daycare or encouraged to stay overnight. Often, when the final move is made, the new resident is kept busy in the activity room while family members bring in furniture, curtains, pictures and personal items and outfit the room with familiar belongings.
All three facilities allow residents to decorate their rooms as they wish, including paint and wallpaper. “This is their home, and they can do whatever they want with their home,” says Marinelli.
At Loyalton, the transition begins with home visits, to build relationships not only with the clients but with their families. “We want them to get to know us, so that it’s familiar when they come here,” says Dean.
“It’s a pretty unique program,” says Slack. “It also allows Vicki to start the Life Story.” Sometimes, these home visits indicate that Loyalton isn’t a good fit. In that case, Slack and Dean provide contact information for other facilities.
“We don’t think of them as competitors,” says Slack. “The Emeritus standard is ‘Safely Somewhere.’ We would want them to come here, but if they can’t, we just want them to be somewhere safe.”
Common stumbling blocks to assisting caregivers and family members are denial that there’s a problem; embarrassment about the behavior; and guilt over not being able to care for the loved one.
“People are so hesitant to seek help, that we often don’t see them until they’re in a crisis situation,” says Godfrey of the Alzheimer’s Association. “Last year, we received just under 4,000 helpline calls, and of those, only 118 came in for personal Care Navigation. We know there are many more families out there in need of our help, so these low numbers are frustrating.”
Godfrey supplies her clients with information about the disease and its treatments, resources for legal and financial services, and assistance in finding home help or daycare facilities, at no charge.
“Basically, I try to discover a family’s three biggest issues, identify steps to help resolve them, and provide a list of resources and services available locally – including family forums and caregiver support groups,” she says. “But usually, the first part is just listening. Every person is unique. Every family story is unique. The challenges, and the responses to them, are always new.
“Many times, the caregiver has been dealing with this issue alone, and it can be overwhelming. If several family members are involved, often, each is in a different stage of acceptance and may dispute decisions being made by the primary caregiver. But we all know that a person can usually put on a good face for guests, and problem behaviors may not surface during visits. In these cases, focus needs to be on the primary caregiver, to offer support and allow that person to make the correct decisions, based on day-to-day observations.”
At Anam Care, construction is underway on five “patio homes,” independent units that will allow both the dementia patient and caregiver(s) to live together, with immediate access to the help and support all need. To provide sevices to those who can’t afford the assisted living option, Marinelli developed Satori Pathways.
“We do outreach, going into people’s homes, to teach families about diet, sleep patterns, meds, handling behaviors,” she says. “We can provide care navigation, local resources, assessment and outpatient treatments. We have a sliding scale, and we try to help out as much as we can.”
Even with so many resources available, Alzheimer’s disease remains a mystery to many.
“People still have misconceptions,” says the Atrium’s Lichty. “Education is our biggest concern. We hold a family forum one month, and family dinners the next month. We want people to share their concerns, and to share in the daily lives of their loved ones. And it helps them to know that they aren’t alone.”
At Loyalton, Dean sends out a monthly newsletter specific to the family of each resident, providing photos and details about his or her recent activities.
“There’s so much the Alzheimer’s Association can do for families,” says Godfrey. “I never send anyone out of here without a packet of information and resource numbers. Our service is about helping families to plan for the care of a loved one, and empowering them – not only to take care of that person, but of themselves.”
“People shouldn’t feel guilty,” says Marinelli. “Moving a loved one into a care facility is a transition, not an end. It frees up the caregiver, to return to being a daughter, a spouse, a grandchild again, to focus on the things that are important and life-affirming.”
Kathleen Gray, LPN, retired from the Department of Veterans Affairs, came to work at the Atrium about a year ago. While she thought she’d seen about everything during her career, she’s learned even more working with Alzheimer’s patients.
“I really love this job,” says Gray. “I’ve become so attached to the residents that I miss them on my days off. It’s a good feeling to know that they’ve come to recognize me as a friend. They may not know my name, or be able to identify me as nurse. But I’ve become a part of their routine. My presence contributes to their sense of well-being. It’s gratifying to know that I’m helping to keep them safe.” ❚