The New York Times recently covered a remarkable study published in the New England Journal of Medicine. The study performed clinical and imaging assessments of 353 adults deemed to be in a minimally conscious or persistent vegetative state. These individuals, who had experienced severe brain injury, stroke, or hypoxia after cardiac arrest were unable to respond to any verbal command. Remarkably, 25% of the patients, when assessed with MRI or EEG, demonstrated an ability to respond to commands with their brain. That is, when they were asked to imagine themselves doing something, their brain response was the same as a normal adult’s without brain injury. The study is among the largest and best of its kind, but is also the latest evidence to support that some individuals in a minimally conscious state may actually maintain an ability to respond; they maintain some form of consciousness. The importance of the results to the care of individuals with brain injury are clear. But what does this have to do with dementia?
This type of research is instructing similar science in patients with dementia, especially severe dementia. As Alzheimer’s and other causes of dementia progress, patients often lose the ability to communicate verbally. For some forms of dementia, loss of verbal abilities is among the first symptoms. For all of these patients, the lost ability to communicate has clear negative ramifications to their autonomy and their care. These patients cannot inform caregivers of their preferences or wishes. They may instead demonstrate agitation and other neuropsychiatric symptoms in response to pain or medical conditions. Improved understanding of these phenomena—improved ability to communicate with patients in whom dementia has affected their ability to speak—could improve the quality of care that can be provided for these patients.
In April, I was privileged to participate in a roundtable meeting convened by the NIA’s Division of Behavioral and Social Research on the Measurement of Subjective Experience of AD/ADRD in Bethesda, MD. We discussed the needs and opportunities to develop methods to assess subjective outcomes in people with dementia, particularly people in the more severe stages of disease when communication may be lost. Subjective outcomes include aspects of behavior more difficult to quantify with traditional biological measures: sadness, loneliness, pleasure, satisfaction, quality of life. The meeting convened an incredible group of experts, many of whom were asked to contribute articles on this topic that will hopefully be published soon, along with a summary of the meeting.
The science of consciousness in dementia, what some call the science of the mind, is in its very early stages. But there is nevertheless exciting work being done and research in brain injury is providing a playbook to follow to understand these critical issues more fully for the good of patients.
