"It's been a long road," Luanne Baron says of caring for her 77-year-old mother, Phyllis.
Baron, of Revere, Mass., took on the role of caregiver nearly three years ago, beginning at home and now during daily trips to visit her mother at a nursing home.
Phyllis has Alzheimer's disease, which has dramatically worsened over the past year, Baron says. "The conversations were becoming more difficult in terms of making sense of things."
And even though her mother continues to ask about Baron's grandparents, who died about 30 years ago, Baron says that her own end of the conversation hasn't changed, in spite of her mother's disease.
"I try to speak to her and any other patient in the nursing home as the human beings that they are," Baron says. "Whether or not it's even comprehended, it doesn't matter. What matters is that you're providing an answer that you would give to any other person who asked the question."
But not all caregivers communicate the same way as Baron does.
"Our society has these negative attitudes about aging, and because of that most people have negative stereotypes about older adults being less competent in communication," says Kristine Williams, associate professor at the University of Kansas School of Nursing.
Williams, who has more than 20 years of experience as a nurse working with older adults, says that based on this assumption, many hospital and nursing-home caregivers communicate in "elderspeak."
This includes using basic vocabulary and grammar, speaking in a high-pitched or loud voice, sounding overly caring or controlling, and using terms of endearment such as "honey" and "sweetie," Williams says.
"Elderspeak is a kind of talk or communication that is common between younger adults and older adults in a variety of settings," she says, adding that it's not too far from "baby talk."
"As health-care professionals, we talk like this to older adults all the time, and we think that in doing this we're giving them a message that we care about them," she says.
But her latest study, presented Monday at the 2008 Alzheimer's Association International Conference on Alzheimer's Disease, shows that this language might have the opposite effect.
Enough of the Elderspeak
Williams and her colleagues analyzed videos of nursing-home encounters between staff and residents who had dementia. They noted whether the staff communicated normally, used elderspeak or remained silent.
The residents' behavior was rated as cooperative, resistive to care or neutral during activities such as bathing, dressing and brushing their teeth. When residents resisted care, their reactions included saying no, grabbing a person, pulling away or clenching their teeth.
When staff members spoke in elderspeak, the residents' resistance to care nearly doubled compared with when staff spoke normally.
Even in silence, dementia patients were more cooperative than when hearing elderspeak.
Dr. Claudia Kawas, professor of neurology, neurobiology and behavior at the University of California, Irvine, says that it might be difficult to determine the direction of the effect.
"When you use elderspeak with someone, does it make them behave badly, or does the care provider start using elderspeak when someone [begins behaving badly]?" Kawas asks.
But Williams says that the researchers looked at residents' behavior seven seconds before the nurses began using elderspeak, and did not find that the residents were resistant to care at that time.
However, they noticed that seven seconds after the nurses used elderspeak, the residents tended to be less cooperative.
"Speaking to a person as an adult and respecting the fact that he is an adult is probably going to get a whole lot more cooperation," says Mary Mittelman, director of psychosocial research and support at the Silberstein Institute for Aging and Dementia at New York University School of Medicine.
One of Mittelman's research projects involves studying Alzheimer's patients and caregivers who visit the Museum of Modern Art in New York City.
She says that one particular man with the condition was particularly happy that the museum tours were conducted "like he was a regular person."
"It is a mistake to assume that [the diagnosis] means that a person becomes more like a baby," Mittelman says. "They may still have a lot of memories from far-distant times, even if they don't remember what happened five minutes ago. They have a history, which babies don't."
"I think there is a tendency for people to infantilize patients, and I do think that it is dead wrong to assume that their language or their ability to interact with you is regressing," she says. "That's not what the disease does."
She explains that when we learn as children, we learn the names of objects first and move on to conquering grammar. However, the brain doesn't just reverse this process during dementia.
"You start losing at the other end rather than just walking back through your abilities," Kawas says. "People with dementia might not be able to remember the word for ball when they want it, but they still have incredibly intact grammatical skills."
That's not to say that more simple communication isn't necessary. Especially in the later stages of Alzheimer's disease, people may need to have activities and instructions broken down into steps, and they may respond more easily to yes or no questions.
"An open-ended question is more difficult because a person has to find and put together all the thoughts into words to communicate it," Williams says.
Even so, "that's different than talking down to them," Kawas says.
In clinic, Kawas says she has noticed that health-care professionals may transition from formal titles such as "mister" and "missus" to calling patients by their first names as their dementia progresses.
"I don't think that's right," Kawas says. "They're the same person. They deserve the same respect that they had before they had memory loss."
Baron says that even in the midst of her frustrations and the pain of watching her mother suffer, she tries to preserve that level of communication that not so long ago they could both sustain.
"Do I resort to baby talk? No," she says. "As sad as the disease is, there's a beauty in the innocence that's there, and I still think it's important to maintain their dignity."