The debilitating effects of advanced dementia how it destroys communication, basic muscle control, even the ability to swallow are difficult to describe in words. Often, it's not until the condition is witnessed up close that it can really be understood.
That is the theory behind a new study by researchers from Harvard Medical School, Boston University and Massachusetts General Hospital and other institutions in which aging participants were asked to decide what kind of end-of-life care they would choose should they develop advanced dementia.
The study, published Thursday in the British Medical Journal, involved 200 healthy 65-year-olds, who were divided into two groups: one was given a verbal description of the symptoms of advanced dementia; the other listened to the same description but also watched a two-minute video of an elderly woman with the condition being cared for in a nursing home by her two daughters. "Tell us, Ma, how many daughters do you have?" the children ask. "One? Two? You don't know?" (The entire video can be seen here.)
The patients were given three options for the type of care they would prefer if they were to develop advanced dementia a progressive, fatal, neurological condition that often follows years of Alzheimer's disease or a series of strokes, and kills patients three to six years on average after the onset of symptoms. Typical options for end-of-life care include prolonging life at all cost, including cardiopulmonary resuscitation (CPR) and mechanical ventilation; limited care, including admission into the hospital and the use of antibiotics, but not resuscitation; and comfort care, including treatment only to relieve symptoms, but not prolong life.
Among the patients who received only the verbal narrative, 64% chose comfort care, 19% chose limited care and 14% chose life prolonging care (3% were uncertain). Among the patients who also saw the video, 86% chose comfort care, 9% chose limited care, 4% chose life prolonging care, and 1% was uncertain.
Perhaps more crucially, says the study's lead author Angelo Volandes of Massachusetts General Hospital, when participants were contacted six weeks later, only 6% of patients who saw the video had changed their preference for care, compared with 29% of those who did not see the video. People who saw the video also scored higher on health literacy tests, given by the researchers to judge knowledge of advanced dementia. "The results suggest that patients who watched the video had a better understanding of the disease and felt more secure in their decision. We felt those results were promising, as the goal for end-of-life decisions is to make sure [the patients] are informed," Volandes says.
Volandes believes that using images and videos of advanced dementia could be particularly helpful for educating populations that have traditionally low levels of health literacy in the U.S., including African Americans and the elderly. Previous studies have suggested that minorities typically opt for more aggressive end-of-life care than their Caucasian counterparts "but what we've found in this study is that health literacy is the driving force in this discrepancy, not culture," says Volandes.
Projections indicate that more than 13 million patients in the U.S. will develop dementia by 2050. Elizabeth Gould, director of quality care programs at the Alzheimer's Association said that early detection of mental decline and advance planning for end-of-life care is crucial for dementia patients because of the disease's degenerative nature. The organization, which provided funding for the new study, "finds the results of the study interesting and hopes to learn more about the role multimedia can play through future studies," she said.
Volandes points out that even though many people have seen portrayals of dementia in movies and TV shows, those images tend to be airbrushed versions of the truth. The video used in the study which shows two daughters talking to and then feeding their mother was meant to provide a reality check. Even so, he says, the full "clinical reality" of the condition such as bladder and bowel incontinence was withheld. "We wanted it to be honest but not overly emotive or visceral," he says.
Volandes's team has also prepared videos of patients suffering from heart failure, late-stage cancer, and chronic obstructive pulmonary disease other leading causes of death in America. These will be used in a series of future studies: "We want to show what real disease looks like. We want to make sure we are on the same page when we use words like "CPR" and "dementia" with patients. End-of-life conversations are important, but so is making sure they are communicated in a clear and meaningful way."