Listen More Carefully to Alzheimer's Caregivers

In 2009, my wife was diagnosed with Alzheimer’s Disease (AD), at the age of 63, but only after two years of misdiagnosis. Despite my observations of obvious AD symptoms clearly noted in logs I presented at each doctor’s visit, my logs were routinely ignored. Perhaps this was because my wife did not exhibiting similar symptoms in the doctor’s office … or perhaps because of repeatedly high scores on the MMSE.

I eventually discovered that it is not unusual for AD caregivers to report that their loved ones were initially misdiagnosed and treated for stress, anxiety, or depression. Maybe that is because these emotional issues can often manifest symptoms of confusion and memory loss similar to those associated with Alzheimer’s, and it is difficult for doctors to differentiate. Maybe it’s because doctors know that they cannot effectively treat AD, but they can often successfully treat symptoms caused by emotional issues. Regardless of the reason, many caregivers note that their doctors simply did not take time to listen carefully to symptoms they were reporting about their spouses. Caregivers also often note how their spouses continue to score highly on the MMSE. 

Fast forwarding to the present, the MMSE continues to show itself as an unreliable diagnostic test for my wife. As a participant in a longitudinal research study at an Alzheimer’s Disease Research Center, she undergoes annual neuropsychological testing each year. With few exceptions, all of her scores on various tests and subtests to assess executive function of the brain, memory, language, attention, and visual spatial abilities have declined significantly during these past three years. Nearly a dozen of her subtest scores are now at the 0-1%level. And yet, on the MMSE, my wife scored 26 in 2009 and 2010, and 25 in 2011. 

Most doctors are time-pressured and understandably want to screen for AD with a test that can be administered and scored quickly. However, quick screening tests such as the MMSE are simply not always effective. As noted by Dr. Peter V. Rabins, Director of the Division of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, “The MMSE cannot be used to diagnose dementia.” Whereas the MMSE can be used to screen for cognition disorders, its limitations include “poor ability to detect minor changes in cognition – that is, mild dementia – and its lack of testing for certain cognitive functions such as executive function.”  ^1. 

Several journal articles in recent years have questioned the continued use of the MMSE for AD screening. One recent comprehensive review notes how the MMSE “may hide too much about what the person can or cannot do. The study’s author states firmly, “Above all, a diagnosis of dementia should not rely chiefly on a MMSE total score. The focus should be on the individual, their history, their strengths, and weaknesses.” In other words, the doctor should strongly consider a caregiver’s observations because only the caregiver can provide that history about strengths and weaknesses.  ^2.  

Researchers at Washington University School of Medicine in St. Louis administered a two minute questionnaire (AD8) to friends and family members of patients being screened for dementia. When comparing results of the AD8 to results of the MMSE, the AD8 was “superior to conventional testing in its ability to detect early signs of early dementia. It (the AD8) can’t tell us whether the dementia is caused by Alzheimer’s or other disorders, but it lets us know when there’s a need for more extensive evaluations to answer that question.”  ^3.

Dr. Ronald DeVere, a neurologist who directs an Alzheimer’s Disease and Memory Disorder Clinic in Austin, Texas, noted to me in an email that all doctors should follow one “rule of thumb” when trying to diagnose cognitive disorders: “If a person comes to a doctor with memory or other cognitive complaints that are verified by caregivers or close friends, a complete battery of neuropsychological testing should be conducted, especially if a person’s score is normal or mildly impaired on cognitive testing. However, observations by a caregiver or close friend should always take precedence over office testing such as the MMSE.” (Quoted with permission.)

So what is my advice to time-pressured doctors when a patient presents with no discernible symptoms during office visits … or when a patient scores very well on a brief screening test such as the MMSE … but when a caregiver tells you that your patient is experiencing serious cognitive or memory problems? My advice is very simple: Listen more carefully to the caregiver, and consider referring your patient for a complete neuropsychological evaluation.

1. Rabins, PV. What is the MMSE? Johns Hopkins Health Alert. December 27, 2010.

2. Nieuwenhuis-Mark, RE. The Death Knoll for the MMSE: Has It Outlived Its Purpose? Journal of International Psychiatry and Neurology. 2010; 23, 3: 151-157.

3. Galvin, JE, Fagan, AM, Holtzman, DM, et. al. Relationship of Dementia Screening Tests With Biomarkers of Alzheimer’s Disease. Brain. 2010; 133: 3290-3300.


Author’s note: I did have an article published on a similar theme. “Forget the mental status test – and learn to listen,” was published as a Letter to the Editor in the Journal of Family Practice. (Vol. 60, No. 5 May 2011, p. 250.) However this submission is substantially different.


Published as a Letter to the Editor in Journal of the American Geriatrics Society, October, 2012, Vol. 60, No. 10, p. 2000. Access at: http.//onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2012.04181.x/full 

 

 

 

 

 

 

 

Forget the mental test -- and learn to listen.

My wife, Clare, was diagnosed at age 63 with Alzheimer’s Disease (AD).  Unfortunately, her AD went misdiagnosed for several years despite my repeated attempts both in person and via written logs to convince our doctors ... a primary care physician, neurologist, and clinical psychologist ... that she was experiencing dementia.  Doctors administered the Mini-Mental State Examination, commonly referred to as the MMSE, several times along with other cognitive tests, but Clare initially scored very well on all of her tests.  A brain MRI showed no definitive signs of AD and she was diagnosed and treated first for stress, then anxiety, and then for depression.  However, Clare’s worrisome and now worsening behaviors were among those listed as early AD signs on several reputable websites.  Medications prescribed to treat her diagnosis weren’t working. 

Growing increasing frustrated when told to “stay the course” by the neurologist when I was observing continuing declines firsthand, I convinced Clare to get a second opinion ... this time with a geriatric psychiatrist affiliated with a major medical center who, by the way, requested copies of all of my logs prior to our first visit.  After a lengthy interview, a review of previous tests, discussion of my logs, and comprehensive new cognitive, physical, and neurological testing at this doctor’s AD center, Clare was finally diagnosed with early onset Alzheimer’s. 

I have since discovered, sadly, that many caregivers across the country can tell a very similar story ... reporting observations of AD symptoms that were misdiagnosed by their doctors and initial misdiagnoses based largely upon the MMSE or some other brief cognitive testing instrument.

Most GPs, time pressured on the best of days, are likely to use AD screening tests that can be administered quickly ... and therein lies the problem.  Current popular screening tests for dementia are not particularly effective.  New quick screening tests coming on the market with claims that they can be used effectively to diagnose dementia will most likely be just as ineffective as the MMSE, a cognitive screening test used for more than thirty years.  However, as noted by Dr. Peter V. Rabins, Director of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, whereas the MMSE can be sued to screen for cognition disorders, “The MMSE cannot be used to diagnose dementia.”  Dr. Rabins further notes that, “It’s (the MMSE) limitations include its poor ability to detect minor changes in cognition – that is mild dementia – and its lack of testing for certain cognitive functions such as executive function.”  (Johns Hopkins Health Alerts: Memory ... “What is the MMSE?”  December, 2010.)

Researchers at Washington University/St. Louis administered a two minute questionnaire (AD8) to friends or family members (termed “informants”) of patients being screened for dementia and discovered that “informants who have regular exposure to the individual provide the most accurate assessments.”  The study reported that, when comparing the AD8 results to those of the MMSE, the AD8 was found to be “superior to conventional testing in its ability to detect signs of early dementia.”  It can’t tell us whether the dementia is caused by Alzheimer’s or other disorders, but it lets us know when there is a need for more extensive evaluations to answer that question.”  (Galvin JE, Fagan AM, Holtzman DM, et. al, “Relationships of dementia screening tests with biomarkers of Alzheimer’s disease.”  Brain, 2010: 133:3290-3300.)

This study also concluded that the MMSE is not a reliable indicator of AD symptoms because such tests “only give a ‘brief’ snapshot’ of a person’s cognitive abilities at one time ... when they are being tested.”  Any caregiver knows that a person with AD can appear to be fine one moment, but definitely not fine the next moment ... just as my wife scored 29 out of a possible 30 on the MMSE in the doctor’s office on the same day that she forgot how to turn on her computer, and could not locate where we keep milk in our kitchen.

Dr. Ronald Devere, a neurologist who directs an Alzheimer’s Disease and Memory Disorders Center in Austin, Texas noted that there is one major ‘rule of thumb’ that all doctors would follow when trying to diagnose cognitive disorders:  “If a person comes to a doctor with a memory or other cognitive complaints that are verified by caregivers or close friends, a complete battery or neuropsychological testing should be conducted, especially if that person’s score is in normal or mildly cognitively impaired on cognitive testing.  A caregiver or close friend’s observations should always take precedence over office testing of memory and cognitive abilities such as the MMSE.”  (Quoted with permission from email correspondence with Dr. Devere.) 

So, please, doctors ... if caregivers share worrisome symptoms of possible dementia with you, listen to them carefully.  They just may do a better job of presenting you with patients’ symptoms of dementia than any cognitive screening test will reveal.

Originally titled, "Doctors ... Please Listen to Alzheimer's Caregivers."  Published in The Journal of Family Practice,  May, 2011, Vol. 60, No. 05, p. 250.  Access at:

http://www.jfponline.com/index.php?id=21643&cHash=071010&tx_ttnews(tt_news)=175994