Redefining Dementia as a Terminal Illness

Dementia affects 5 million Americans.  The number is expected to triple by 2050.  Many believe dementia is simply a mental ailment of old age.  It is not!

A recent Times article highlights a large research study published in the Oct. 15th issue of the New England Journal of Medicine.  The conclusion is that “dementia is a terminal illness, and patients warrant palliative care“.   This is startling information both to the public and those in the medical field.

The Study

323 ...

Boston-area nursing home residents with advanced dementia were followed for 18 months

Several things were tracked:  progression of disease, complications, survival rates, treatments received and health-care proxies’ understanding of advanced dementia and prognosis.

55% died  (half of deaths occurred within first 6 months)

Median survival span was 478 days (comparable to terminal-cancer patients)

Only 7 of the 323 had a major health event during their final 3 months of life.

What happens in brain failure?

Dr. Claudia Kawas, professor of neurology at UCIrvine, sums up the importance of the brain very well, “We forget the brain does everything for us – controls the heart, the lungs, the gastrointestinal tract, the metabolism.”

A syndrome of symptoms and complications occur in brain failure

Including:  eating problems, pneumonia, difficulty breathing, pain and fever

Why is the distinction of  terminal illness so important?

In advanced dementia, as systems start to fail, patients are often treated aggressively.   Why?  The patient’s children want to do everything possible to help keep their parent live, and understandably so.    But, in the study, when family members understood the nature of advanced dementia and the fact their parents may have at most 6 months to live, they were less likely to pursue such aggressive intervention, instead focusing on pain-relieving treatment.

This is a hard issue to come to terms with.  For me, it highlights the importance of really understanding what our parent wants, and to have that in the written form of an Advance Directive. We can pose the question to our parent, “Mom/Dad, please let me be sure I understand your wishes when you reach end of life.  How do you feel about aggressive treatments and palliative care?”  Make it an open ended question and give them space and time to answer.  But, do not indefinitely put off the writing of an Advance Directive.

When the time comes, and it will for each of us, you will be able to make a difficult decision knowing you are acting in your parent’s behalf, following their wishes.

Source: “Redefining Dementia as a Terminal Illness”, http://www.time.com/time/health/article/0,8599,1930278,00.html

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