The Tangled Neuron

The Caregiver Hour

On Monday, I'll be on my friend Kim Linder's radio show, The Caregiver Hour.  Kim and I will be talking about living with memory loss, along with Bill Haley, a psychologist and Professor at USF's School of Aging Studies and George Hanna from 1st Choice Pharmacy.

Tune in to 1250 WHNZ (or listen through the station's web site) at 11 AM Eastern time to hear the discussion!

Correction to New York Times Article

The New York Times has published a much-needed correction to its article on a spinal fluid test that "can be 100 percent accurate" in predicting which patients with memory loss would go on to develop Alzheimer's.

Living with Memory Loss Approved By ADEAR

Living with Memory Loss has been approved by ADEAR (the U.S. National Institute on Aging's Alzheimer's Disease Education and Referral Center) and is listed in their database!

The Trouble With Expectations

You’ve probably seen recent media reports on the proposed changes to the guidelines for diagnosing Alzheimer’s, along with an article claiming that “a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.”   Today’s headlines include a story about a blood test for predicting whether you’ll develop Alzheimer’s.

Although most professionals are careful to say the proposed guidelines and tests aren’t ready for widespread use, public expectations seem very high.   On a flight last month, I sat next to a man in his 20s whose stepfather is showing signs of memory loss.  My seatmate wasn’t terribly concerned about his stepfather, he said, because he had seen the recent reports of progress in Alzheimer’s research and believed that a cure is around the corner. 

Expecting Improved Diagnosis and Treatment

        Mary Kay Baum

Two of my friends diagnosed with young onset dementia also have high expectations.  They sent me their thoughts supporting the proposed guidelines for diagnosis, particularly the guidelines for a diagnosis of “preclinical Alzheimer’s.”  Their strong support is based on the long and difficult process each went through to get diagnosis and treatment, and the relative success of treatments in stabilizing their conditions.   It’s also based on their assumption that they would have been diagnosed with some form of Alzheimer’s if the proposed guidelines were used when they first sought answers about their symptoms.

“Consider me,” wrote Mary Kay Baum, who has a strong family history of dementia.   “I am a 63 year-old woman who was a lawyer and pastor with two graduate degrees, thirty years of public service, and ten years of cognitive challenges. The old Alzheimer’s disease criteria ignored me. It did not have a vocabulary for my issues. Doctors did not know what to do with me! The criteria from 25 years ago did not advise practitioners to help me prevent the dementia we had seen in my mother and my aunt while in their mid-fifties. Most research excluded me…. Many in my situation fear we won’t be treated until we are really demented.”

From The Financial Industry, A Gloomy View of Alzheimer's Research

There’s been a lot of optimistic headlines about diagnosing, treating and curing Alzheimer’s lately.  It seems some financial and industry analysts are not so optimistic. 

MarketWatch reports that the September issue of Neuroinvestment contains an extremely gloomy assessment of prospects for new Alzheimer’s drugs, and suggests that all research efforts need a “reset.”