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Death from dementia underecognized

Kathleen Blanchard's picture

Scientists at the Institute for Aging Research of Hebrew SeniorLife, an affiliate of Harvard Medical School say that dementia patients need better end of life care. Dementia is a terminal illness like cancer and other critical diseases, yet death from dementia is underecognized.

Lead author Susan L. Mitchell, M.D., M.P.H., a senior scientist at the Institute for Aging Research says, "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."

Dementia patients and their families would benefit from improvements in palliative care. Making plans for end of life and finding ways to reduce pain and suffering are important issues that need to be addressed, shown by the prospective study published n NEJM.

The "Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life," or CASCADE, study followed 322 patients with dementia in the Boston area in 22 nursing homes. Toward end of life the patients could speak fewer than six words, did not recognize family members, did not walk, and were incontinent.

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During the study 177 patients with dementia died within six months, after developing complications that included pneumonia, eating problems and fever. At end of life the patients experienced pain, shortness of breath and pressure ulcers from being immobile. Aspiration (inhaling fluid or food into the lungs) was also common.

Families of patients with dementia who did not understand poor outcomes with advanced dementia were more likely to seek aggressive care. Those who did were more likely to seek palliative care, (comfort measures) for their loved ones.’ Among families who thought they understood dementia outcomes, only one-third said they had received physician counseling about complications of dementia, the most common of which is Alzheimer’s disease.

"A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition," says Dr. 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."

Dementia is the leading cause of death in the United States. The study shows that despite the fact that Alzheimer’s disease is associated with high mortality, and pain, and suffering, death from dementia is still underecognized. Distressing symptoms require improvements in end of life care.