At its annual meeting here, the Alzheimer's Association previewed its first-ever clinical practice guidelines for primary care physicians evaluating Alzheimer's disease, dementia, and neurodegenerative cognitive behavioral syndromes, to be released in full later this year.
Twenty recommendations for primary and specialty care settings are in the new guidelines that were introduced at the Alzheimer's Association International Conferenceon Sunday. Key points were outlined in a press release; the formal clinical practice guidelines will appear later in a peer-reviewed journal and will include rationales behind the recommendations to provide context for physicians and nurse practitioners, a spokesperson for the association said.
The most important guideline may be the first one: patients who have cognitive, behavioral, or functional changes should be evaluated, said James Hendrix, PhD, the association's director of global sciences initiatives.
Alzheimer's disease and dementias often are undiagnosed, Hendrix told MedPage Today. "When patients come in with complaints of symptoms, they should be followed up for further evaluation. All too often, they're not, for whatever reason -- physicians feel they don't have the right tools, or they think a little bit of memory problems as we get older is normal. Physicians need to take these concerns seriously."
And patients who are more challenging to diagnose -- those with atypical or rapidly progressive cognitive-behavioral symptoms -- should be referred to a specialist.
"We have to recognize there are people who may be diagnosed with a treatable disease or disorder," he said. "By not doing something, by not following up, by assuming that everybody who walks in the door is going to have a disease that's difficult to treat, we do patients a disservice."
"A significant portion of people with cognitive impairment or dementia who are taking medication for Alzheimer's may not actually have the disease," Hendrix pointed out. In IDEAS, a study assessing the effect of amyloid positron-emission tomography (PET) imaging on patient outcomes, interim results showed that about 45% of patients with mild cognitive impairment and 30% of patients with dementia did not have brain amyloid and therefore did not have Alzheimer's disease, he noted.
The guidelines also call for clear communication about diagnoses and test results. In an Alzheimer's Association survey a few years ago, only 45% of people with Alzheimer's disease or their caregivers said their doctor told them their diagnosis, Hendrix noted.
"People need to plan for their future. They need to prepare themselves and their families for what's to come. If you had a late-stage form of deadly cancer and only had a few months to live, you'd be told. We need to give people with Alzheimer's and dementia the same respect."