Dying from dementia

October 14, 2009

INDIANAPOLIS - A growing number of older adults are dying from dementia. In an editorial in the October 15, 2009 issue of the New England Journal of Medicine, Greg Sachs, M.D., professor of medicine and director of the Division of General Internal Medicine and Geriatrics at the Indiana University School of Medicine and a Regenstrief Institute investigator, notes that end-of-life care for most older adults with dementia has not changed in decades and urges that these individuals be provided far greater access to palliative care, the management of pain and other symptoms.

Dr. Sachs believes that more research on palliative care for patients with dementia is needed to update public policy and get lawmakers and insurance companies to recognize the need to support and fund care which will improve the overall health of older adults who can no longer speak for themselves.

"Since individuals with advanced dementia cannot report their symptoms, these symptoms often are untreated, leaving them vulnerable to pain, difficulty breathing and various other conditions. We shouldn't allow these people to suffer. We should be providing palliative care to make them more comfortable in the time they have left," said Dr. Sachs, who is a geriatrician and medical ethicist.

While it is not easy, caregivers and medical personnel should attempt to pick up on nonverbal clues of pain, such as the individual holding the body in a certain way to avoid a painful posture, or exhibiting swollen, tender joints, he said. These observations, reported by a caregiver or found on medical examination, may help the physician make the patient more comfortable, and help identify underlying conditions.

Palliative care involves a team-oriented approach to pain management and medical treatment, as well as emotional support tailored to the patient's needs. Palliative care focuses on relieving symptoms such as pain, shortness of breath, fatigue, nausea, loss of appetite and difficulty sleeping. Hospice care provides palliative care but palliative care can be administered regardless of prognosis along with medical treatment and does not hasten death.

Dr. Sachs' editorial accompanies a Harvard University observational study of 323 patients with advanced dementia residing in 22 nursing homes which found that while few suffered a sentinel event such as a stroke or a heart attack, the survival of patients with advanced dementia was usually less than a year, especially following the occurrence of pneumonia, episodes of fever, or eating problems.
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Dr. Sachs leads the Indiana Palliative Excellence in Alzheimer Care Efforts (IN-PEACE) Program which is studying the feasibility of incorporating an outpatient palliative care program for patients with dementia into the primary care setting, where most older adults receive their medical care. The program, supported by a grant from the National Palliative Care Research Center, provides improved symptom management, enhanced family support, and assistance with difficult decision making.

Indiana University School of Medicine

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