Isn’t it one of our biggest fears—losing our minds and being warehoused in one of “those places”? Don’t we all have the images in our heads of people drugged into silence, plunked in front of TV’s, forgotten?
There’s a (slowly) 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” and rethinking many of the givens that have been established not for the happiness of residents but for efficiency.
There’s nothing lovely about the 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 It’s institutional-looking and outdated.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 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 even wore adult diapers for a day (and used them . . . and that was REALLY not comfortable).
They find that their costs have remained stable and in-line with what other nursing homes charge since implementing these changes with half of operating expenses going for staff salaries and ten per cent for 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. A 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 the plates from the white tablecloth.
People with dementia often forget to eat and may be acting out when they actually 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 available. Says Tena Alonzo, director of research, “ Whatever your vice is, we’re your folks.” 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 re-orient 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 and if a former dentist is agitated and confused, staff asking him to look in her mouth can settle him down. A storage closet that once was 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, or 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.
For many patients, what gives them joy is caring for children. At first some innovators were hesitant to give residents baby dolls, worrying that it could be demeaning, but it provides solace for many. A resident approaches a staff member, asking her to admire her baby doll. The staff squats down, compliments the doll’s shoes and says, “You’re the best mom I know”. The resident beams.
The Bus Stop 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 them “to wait for the bus”, chatting until the patient forgets what they are doing and is 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 them. As they calm down, talk turns to other matters as they are gently brought out of the past into present-day reality.
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.”
–The Bus Stop, Radiolab Podcast, 3-23-2010
–Giving Alzheimer’s Patients Their Way, Even Chocolate, NY Times, 12-31-2010
–The Sense of an Ending, The New Yorker, 5-20-2013