According to researchers at the Institute for Aging Research of Hebrew SeniorLife,, the clinical course of advanced dementia is very similar to those experienced by patients with terminal conditions. Dementia is just about being senile and forgetful. It also comes with symptoms such as discomfort, distress, pain, and eventually death. However, patients with advance dementia seem to be underecognized as being terminal or at high risk of mortality and tend to receive suboptimal end-of-life care. This was the result of the “Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life,” or CASCADE study.
According to scientist and study author Dr. Susan L. Mitchell:
“Dementia is a terminal illness. As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer.”
Unlike those with terminal cancer, however, patients with dementia are seldom rendered the appropriate palliative care for the terminally ill. Instead, many receive interventions and treatments that are not only futile, but may also add to pain and distress.
The clinical progression of dementia is not as well understood as that of cancer. Most of the patients are elderly who are confined to nursing homes. Many of these have difficulty in communication or recognizing family members. It is not clear, however, whether these nursing homes are equipped to recognize the signs of advanced dementia and whether they are well-equipped to provide end-of-life care.
Currently, more than 5 million Americans suffer from dementia, a number that is expected to increase by almost three-fold in the next 40 years. A recent study by Alzheimer’s Disease International estimates that the number of people with dementia worldwide will exceed 35 million by 2050. Dementia is a group of symptoms severe enough to interfere with daily functioning, including memory loss, difficulty communicating, personality change, and an inability to reason. Alzheimer’s disease is the most common form of dementia.
Prof. Greg Sachs writes in his editorial in the New England Journal of Medicine,
“Since individuals with advanced dementia cannot report their symptoms, these symptoms often are untreated, leaving them vulnerable to pain, difficulty breathing and various other conditions. We shouldn’t allow these people to suffer. We should be providing palliative care to make them more comfortable in the time they have left.”
He recommends that caregivers and medical personnel should learn to look for nonverbal cues of pain and distress. Palliative care should focus relieving symptoms such as pain, shortness of breath, fatigue, nausea, eating problems, and sleeping difficulties.