Late-stage dementia undermined, says study

Dementia is a serious cognitive disorder that generally occurs after the age of 65. Patients are often bedridden and can no longer communicate about their needs, recognize close family members, or perform basic functions like going to the bathroom, in the late stage of the disease.

The findings of the study highlight the fact that even though dementia is associated with high mortality, pain and suffering, fatality of the deadly disease is still under-recognized. The study urges that efforts should be made towards finding ways to reduce pain and suffering of such patients.

Lead researcher Susan L. Mitchell, MD, of Harvard Medical School’s Institute for Aging Research said, “There is a lack of recognition that dementia is a terminal illness and this has a big impact on the quality of care patients receive.”

“We found that a high percentage of patients had distressing symptoms toward the end of life,” Mitchell added.

Patients with advanced dementia show stressful symptoms
Researchers based at the Harvard Medical School studied 323 patients with advanced dementia living in 22 Boston-area nursing homes for a period of 18 months.

During the follow up period, the researchers noticed that the patients could no longer walk independently or recognize their family members, could speak no more than five words at a time and were found to be incontinent. Nearly 177 (55 percent) patients died during this period.

The team speculated that because their verbal and cognitive skills had been severely impaired, the patients showed such distressing symptoms.

Mitchell said, "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."

It was also found that nearly 40 to 50 percent of the patients experienced pain, shortness of breath, ulcers as they got closer to death, 53 percent developed a fever at least once, 41 percent caught pneumonia and 86 percent could not eat on their own.

Families recognizing disease’s severity more likely to help their dear ones
To determine the closed ones’ understanding of the diagnosis and complications, the family members of these patients were also surveyed by the Harvard team.

It was observed that those families who understood the poor outcomes of the advanced dementia were more likely to seek palliative care—comfort measures that reduce pain--for their loved ones.’

On the other hand, those who could not understand the same were more likely to seek aggressive care—complicated medical interventions-- for their loved ones.

"A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition," said Mitchell. "This knowledge will help to give health-care providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches."

The findings of the study appear in the New England Journal of Medicine.