Advanced dementia should be viewed as a terminal illness that requires palliative care, not further treatment, concludes a report in the New England Journal of Medicine.
Anything less causes patients to suffer unnecessarily, suggest the authors, led by Dr. Susan L. Mitchell from the Hebrew Senior Life Institute for Aging Research in Boston.
Patients with advanced dementia can no longer think properly nor care for themselves. They often can't speak and remain bed-ridden for most of the day.
While dementia doesn't directly cause physical injury, in the final stages, patients can often no longer swallow and can develop infections such as bed sores and pneumonia that can hasten death.
The authors of this report write that too often, as advanced dementia patients approach the end-of-life, they suffer aggressive medical interventions that offer little benefit. What patients really need is "comfort" care, the authors contend.
Mitchell and colleagues followed the course of 323 persons in 22 Boston area nursing homes with advanced dementia. The patients generally no longer recognized family members, spoke only a few words, were bed-ridden and incontinent. Over 18 months of study:
- 53 per cent of the patients developed a fever at least once
- 41 per cent developed pneumonia
- 86 per cent developed eating problems.
- 55 per cent of the patients died
As well, nearly 41 per cent of those who died had at least one "burdensome" treatment within 90 days of death, such as a visit to the ER, intravenous treatment, or placement of a feeding tube.
However, when family members were aware of the poor prognosis, patients were less likely to have these interventions in the final days of life.
Very few of the patients died from a simple physical "event," such as stroke or heart attack. Instead , most died from either infections, eating problems or other conditions related to their dementia, points out Dr. Greg A. Sachs from the Indiana University Center for Aging Research in Indianapolis, who was not involved in the study, in an accompanying commentary.
In his remarks, Dr. Sachs recalls his maternal grandmother's struggle with advanced Alzheimer's disease. Her final months in a nursing home included repeated antibiotic treatments for infections and restraints to control her agitation.
"My grandmother had little in the way of either comfort or company toward the end," he writes.
He adds that 30 years later, end-of-life care for dementia "doesn't look all that different from the treatment she received."
Dementia patient caregivers "need to recognize and treat advanced dementia as a terminal illness requiring palliative care," Sachs writes, referring to care that is aimed at easing a person's pain, but is not intended to halt an illness' progress.
