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Families Need to Know When Dementia Becomes Terminal
Date:10/14/2009

ere incontinent and were totally dependent on other people for the most basic care, according to Mitchell.

During the study period, 55 percent of those enrolled in the study died. The most common complication associated with the death was pneumonia, followed by fever (not caused by pneumonia), and then eating problems.

Many of the nursing home residents experienced distressing symptoms such as shortness of breath (46 percent) and pain (39 percent).

During the last three months of life, more than 40 percent of those with end-stage dementia underwent at least one serious medical intervention -- hospitalization, emergency department visit, IV nutrition or tube feeding.

But, said Mitchell, "When family members understood the clinical complications and prognosis, their loved ones were less likely to get burdensome interventions."

She said only 27 percent of those whose loved ones understood that end-stage dementia was terminal and that complications might occur -- such as fever, pneumonia or an eating problem -- underwent a burdensome medical intervention in their last three months of life. That compared to 73 percent of those whose families didn't understand that their loved one was dying or the medical complications that might ensue.

Mitchell believes that communication between families and care providers needs to improve. She also believes that high-quality palliative care and hospice should be available to nursing home residents with dementia, in the same way that they're available to other people with terminal illnesses, such as cancer.

However, according to an accompanying editorial in the same issue of the journal, people with advanced dementia are currently much less likely than someone with cancer to be referred to hospice.

"Patients in nursing homes who have dementia are at risk for undertreatment of pain and for treatment with burdensome and possibly non-beneficial interven
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