BY DANIEL GAITAN | firstname.lastname@example.org
The nation is already facing negative effects from the “Silver Tsunami” – and it’s going to get worse.
Currently, more than five million Americans are suffering from Alzheimer’s disease or some other form of dementia. As the massive baby boomer population ages, the number of those facing cognitive decline will balloon – by 2050, it is estimated to impact 16 million people.
During her keynote speech at the NorthShore and University of Chicago Hospice and Palliative Care Symposium this month, The Harvard Medical School’s Dr. Susan L. Mitchell highlighted research showing a 68 percent spike in the number of deaths from dementia from 2000 to 2010. In comparison, deaths from breast cancer, prostate cancer, heart disease, stroke and HIV declined in the same time period. Dementia is the fifth leading cause of death among those 65 and older.
“The take home message: lots of people are dying from this disease,” Mitchell, a leading researcher on the progressive illness, said to an audience of medical professionals and caregivers at the Chicago Botanic Garden.
More troubling: she suspects that many deaths associated with dementia are never reported as such. “Any data that you see stemming from death certificates probably under reflect Alzheimer’s and dementia as the cause of death,” she said.
The death certificates of many who die from complications of dementia do not include the diagnosis. The reality raises concerns about the accuracy of mortality statistics, as evidenced in a 2009 study of nursing home residents published in the Journal of the American Medical Association.
Part of the problem, according to the study, is the “underestimation” of the burden of dementia as a major fatal illness. Since the vast majority of dementia-related deaths occur in nursing homes, increased training among those completing death certificates is needed.
Advance Care Planning
People with the most advanced stages do not recognize their family members, are unable to speak, remain bed-bound and are incontinent. Unlike advanced cancer or severe stroke, death from dementia typically does not come after a steep decline. “For a chronic disease like dementia, it is less obvious when someone is near death,” Mitchell said. “It is really hard to predict.”
That unpredictability is why Mitchell encourages patients and families dealing with the disease to complete an advance health care directive as soon as possible.
An advance directive may take the form of a medical order or power of attorney for health care. The overall purpose of such forms is to help ensure one’s end of life wishes are carried through in case of incapacity. They also help prepare patients and loved ones for the symptoms and side-effects of disease.
“If you leave here with anything, understand the role of advance care planning,” Mitchell said, outlining the important steps of considering, communicating and documenting one’s end of life health preferences well before dementia’s cognitive impact takes its toll.
“This is a long disease with lots of opportunity to talk with family members and patients,” she said. “Have them begin to think about what they would want for themselves and their care when such events happen toward the end of their disease.”