Dementia. For many people, it’s a triggering word. Perhaps you have or have lost a loved one with dementia. Or maybe you fear ending up with it yourself. Whether an active fear of yours or not, we all have the images in our heads of people no longer knowing who they or you are, ending life in a state of confusion.
There’s a (slow) growing movement to introduce effective, respectful and inexpensive innovations to nursing homes for people with dementia. The research suggests that creating positive emotional experiences for patients who are in a continual state of confusion as to time and place reduces behavioral problems and the suffering that underlies them.
Beatitudes Campus in Phoenix is at the forefront of innovations in the U.S., conceptualizing its residents as “people who have trouble thinking.” They’ve also been rethinking many of the procedures that have been established in nursing homes—not for the happiness of residents, but for efficiency.
There’s nothing lovely about Beatitudes. It’s institutional-looking and outdated. And yet, says Jan Dougherty, a director of another facility, “They’re probably doing some of the best work” and have “virtually no sundowning,” a reference to agitated, delusional behavior that often shows up in the afternoon and evening with dementia patients.
No Fixed Routines
All staff members at Beatitudes, from doctors to housekeepers, are expected to put the needs of the residents first, offering companionship, affection, tasty food and small sensory pleasures throughout the day. Halls are distinctively colored to help patients find their way back to their rooms. There are no fixed bedtimes or rising hours and no bathing schedules. Provided they maintain basic hygiene, patients may choose when and if to bathe and spa-like bathrooms provide a desirable ambiance.
Staff members are sensitized to the issues of helplessness and being cared for by people one may not recognize, undergoing trainings in which they experience being fed and have their teeth brushed. The director submitted to a sponge bath in front of the staff (it was not comfortable), and staff wore adult diapers for a day (and actually used them, which was REALLY not comfortable).
Beatitudes find that their costs have remained stable and in-line with what other nursing homes charge since implementing resident-focused changes. Half of operating expenses go toward staff salaries and 10 percent toward food. They pay their staff the same as before, but they carefully choose staff that really have a feel for the work.
Generally psychotropic drugs are reduced or eliminated altogether. Dementia patients are especially sensitive to side-effects from drugs. Antipsychotics are prescribed when someone suffers from, say, schizophrenia or when a resident very close to death is having distressing hallucinations. Drugs are primarily given for pain or depression.
They find that chocolate kisses are more effective than Xanax and are dispensed freely. One staff member says, “It send messages they can still understand. ‘It feels good, therefore I must be in a place where I’m loved.’”
Food as Love
Cookies, small sandwiches and other snacks are always available. Staff pass snacks on plates like hors d’oeuvres at a cocktail party. Food is served on bright-colored Fiestaware, making it both appealing and also helping visually impaired people distinguish plates from the white tablecloths.
People with dementia often forget to eat and may act out when they need food. Staff also found that nutritious, low-salt, low-fat foods can actually discourage residents from eating. Snack carts and accessible refrigerators, formerly filled with Ensure, now hold yogurt and other soft, appetizing foods. Dementia patients often soothe themselves by sucking just as they did when they were babies, so lollipops are always available. It’s hard to feel bad when there’s something sweet on your tongue.
Bacon, cigars or an alcoholic nip at night are all also available. “ Whatever your vice is, we’re your folks,” says Tena Alonzo, director of research. It might seem reckless to give ice cream to an elderly person with diabetes, but Ann Wayatt of the Alzheimer’s Association comments, “The glass of juice is not going to kill them. And—though caregivers for people with dementia refrain from saying such a thing aloud—would it be so bad if it did? We can’t change the inevitable.”
Rather than pushing to reorient patients to the present, staff go along with residents’ delusions. If a patient thinks that a staff person is her daughter and wants a hug and a kiss, she’ll get it. If a former dentist is agitated and confused, a staff asking him to look in her mouth can settle him down. A storage closet that was once filled with adult diapers is now used according to the current interests of residents. It can be set up as a library with an armchair and books; a crafts area with sewing machine, fabrics and boxes of buttons; or a nursery with crib, vintage high chair, rocking chair and baby doll.
Specific activities related to something patients once enjoyed are encouraged and facilitated. Benrath Senior Center, an innovative setting in Dusseldorf, Germany had a patient who would wake every night at 2 a.m. insisting that he had to get to his baking job. Now someone accompanies him every night to the kitchen where he goes to work. He feels enormous pride and satisfaction in a job well done.
Many patients experience joy in caring for children. At first, some innovators were hesitant to give residents baby dolls, worrying that it could be demeaning. Rather, it provides solace for many. A resident approaches a staff member, asking her to admire her baby doll. The staff member squats down, compliments the doll’s shoes and says, “You’re the best mom I know.” The resident beams.
A Bus to Nowhere
All unlocked nursing homes have problems with patients wandering or running away, desperate to go home. At Benrath Senior Center they installed a faux bus stop in front. Now, if they notice someone missing, they look out front and invariably the patient is sitting at the bus stop. An attendant will go sit with the patient “to wait for the bus,” chatting until the patient forgets what he or she is doing, happy to go inside.
Or perhaps a person is hugely agitated, frantic to go home because their mother will be worried. A worker will bring this person to the bus stop and sit with him or her. As the patient calms down, talk turns to other matters and they are gently brought out of the past into present-day reality.
Check out a great Radiolab podcast on A Bus to Nowhere.
Time to Appreciate Each Soul
Tena Alonzo of Beatitudes regards residents as being “closer to the higher being. This is who they are: real, honest and sometimes raw. There is no ability to reason, or to cover up who you really are. And so, for much of the time, you see the loveliness of the soul—it is bare for everyone to acknowledge.”