Sunday, August 11, 2013

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.// 



1 comment:

  1. Caring for a spouse, parent or a loved one with memory loss, Alzheimer's disease or any other types of dementia requires a commitment to cope each day with patience, compassion and flexibility.

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