Alzheimer's group urges more focus on early detection
■ Improved treatments make it possible to slow the disease's progression.
By Victoria Stagg Elliott — Posted Aug. 15, 2005
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The emergence of a handful of drugs that can slow but not undo the mental deterioration that characterizes Alzheimer's has increased the need to diagnose it at an early stage. The result: More people are being diagnosed at a point in which these drugs can be most effective.
At the same time, experts are struggling to meet the needs of those who are diagnosed when they still have significant functioning, said several presenters at the Alzheimer's Assn. annual dementia care conference held in Chicago last month. For example, for the first time, the meeting featured a track on early-stage issues.
"There's no doubt that there's more recognition by physicians, but the programs and services are not there," said association Senior Vice President Kathleen O'Brien.
Experts said Alzheimer's interventions need to be individualized to suit the patient's disease stage and empower him or her to take a more active role in coping with the condition and preventing its progression.
Treatment strategies also should take into account the fact that those in the early stages could be far more active in their own care. Many widely used interventions are more geared to patients at later stages and speak more to the caregiver than the patient.
"We really need to be thinking how we can tailor our education and support to the early-stage patients who may still have a lot of skills. They need to be enticed to be involved in coping with this disease," said J. Scott Roberts, PhD, who spoke on the research and practice issues associated with early-stage patients. He is a clinical psychologist at the Boston University School of Medicine's Alzheimer's Disease Center.
But while Alzheimer experts are paying increasing attention to the needs of patients diagnosed at an early stage, they also say significant work is needed to increase the rate of early detection, particularly in primary care. The majority of patients are still diagnosed when they are at moderate or late stages of the disease.
"The earlier we can intervene, the better, and the longer time they may have to be well," said Gary Epstein-Lubow, MD, who presented on stress reduction for caregivers and is a staff psychiatrist at Butler Hospital in Providence, R.I. "Primary care is where people will present with the first symptoms long before they're in a memory program."
This need is also increasing because of the nation's growing elderly population. Alzheimer's was the 8th leading cause of death in 2003, with a nearly 6% increase over the previous year, according to "Deaths: Preliminary Data for 2003," issued by the National Center for Health Statistics in February.
"We have got to look at what's happening," said Neelum Aggarwal, MD, a conference keynote speaker and assistant professor of neurology at Rush University Medical Center in Chicago. "We are going to have an increasing number of cases, and this disease is going to basically change the demographics of the United States."
Experts expect that early-stage issues will become more significant as more effective treatment modalities are developed. Most clinicians appreciate that there is something they can do to treat cognitive decline but recognize that the efficacy of most of these medications is modest. Most hope that a vaccine currently in phase 2 trials could turn out to reverse the disease.
"None of these medications have helped in ways that are truly satisfactory," Dr. Aggarwal said. "We need disease-modifying treatments."
Meanwhile, recognizing the need for increasing physician involvement in the care of Alzheimer's patients as well as the ever shrinking office visit, the association has launched the "Partnering with your Doctor" campaign. This aims to educate patients and caregivers on strategies to get the most out of a doctor appointment.
"Alzheimer's is not a death sentence. We can now live with this disease, and we need to work together with physicians," O'Brien said.