Mayo Clinic study finds men with Alzheimer's are misdiagnosed more often than women

Bob Swerlick rswerli at GMAIL.COM
Wed Jul 27 22:58:39 UTC 2016


Hardening back to the issue of harm, perhaps the specifics of Alzheimer's
v. Not Alzheimer's may qualify as a clinically relevant diagnostic error.
If the subjects were appropriately labeled as having dementia and a
correctable etiology not missed, is the  prognosis and treatment radically
altered?

RAS

On Wednesday, July 27, 2016, Peggy Zuckerman <peggyzuckerman at gmail.com>
wrote:

> Peter, That kind of discussion you have provided is a wonderful basis for
> the kind of discussion that too many families should be having--yet are not.
>
> In our family, there was no real discussion as to the factors which might
> have led to the diagnosis, and with a mix of doctors handling the various
> issues, obesity, blood pressure, and the family 'history', the diagnosis
> was nearly not at all discussed.  Rather there was an ongoing shifting of
> medications, depending upon the doctor most recently seen, with an obvious
> disconnect by all of us and all of them as to the impact of the various
> medication which may have exacerbated the problem.  No objective way to
> measure over a period of days what the behaviors might be, just the gross
> instances of not recognizing where she was or who a family member was.
> Those were interspersed with rational discussion about, "Why people keep
> saying I did something, when I did not", and other sad stories.
>
> Looking as always for ways to discuss this issue with the family members,
> but no one want to discuss that which they fear may be coming their way...
>
> Many thanks for all those who serve these patients and their families,
> Peggy
>
> Peggy Zuckerman
> www.peggyRCC.com
>
> On Wed, Jul 27, 2016 at 12:13 PM, Elias Peter <pheski69 at gmail.com
> <javascript:_e(%7B%7D,'cvml','pheski69 at gmail.com');>> wrote:
>
>> Wickedly complex and nuanced response beyond me at the moment, but it is
>> a very good set of questions and deserves at least a start of a reply.
>>
>> Dementia is a family of diagnoses/conditions. Most are ‘clinical
>> syndromes’ meaning that they are a label applied to a constellation of
>> clinical characteristics that tend to occur in a group. For most of these,
>> a specific diagnosis (which requires knowing the cause and pathologic
>> process) is either not possible at all, or only possible post mortem. The
>> labels serve two purposes:
>>
>>
>>    - provide some degree of predictive information (this pattern usually
>>    progresses slowly/fast/episodically, or this pattern tends to cause
>>    aggression/incontinence/language problems).
>>    - help make educated guesses about what interventions might be
>>    useful. (E.g., smoking cessation and control of BP in multi-infarct
>>    dementia.)
>>
>>
>> There are some demented states that have a specific and identifiable
>> cause: b12 deficiency, hypothyroidism. These are relatively uncommon but
>> worth looking for (obviously) and very gratifying when found - if found
>> early enough to prevent permanent damage. (This is in contrast to delirium,
>> where underlying causes are pretty common.)
>>
>> Alzheimer’s is still a pathologic diagnosis. Technically, it can only be
>> made at autopsy. There is still no accepted accurate test with acceptable
>> sensitivity and specificity. On top of that, the medications used have
>> statistically significant but often clinically meaningless benefits:
>> delaying institutionalization by several months, for example.
>>
>> The clinical challenge is that because Alzheimer’s (which is increasingly
>> looking like it has more than one sub-type) is a syndrome rather than a
>> disease, is not easily and reliably differentiated from other dementing
>> processes, can occur in parallel with other dementing processes, and
>> because treatment is minimally effective for almost all dementia, no one
>> wants to be honest about it. Clinicians don’t like to be powerless and
>> patients and family desperately want more optimism and certainty than is
>> usually appropriate.
>>
>> The most important two things I found were:
>>
>>
>>    - Honest discussion about what we know and don’t know with patient
>>    and caregivers.
>>    - Focus on management of the environment and robust support rather
>>    than on medication.
>>
>>
>> Dunno if that helps.
>>
>> Peter
>>
>> On 2016.07.27, at 12:07 PM, Peggy Zuckerman <peggyzuckerman at GMAIL.COM
>> <javascript:_e(%7B%7D,'cvml','peggyzuckerman at GMAIL.COM');>> wrote:
>>
>> Having been involved in a small way with a re-design workshop for
>> Alzheimer's patients, I have become very concerned that there is no clear
>> way to diagnosis Alzheimer's patients.  Certainly there was no agreed upon
>> way to analyse the potential patients at an early time, such that
>> interventions can be readily administered and monitored.
>>
>> My mother-in-law had Alzheimer's, or at least was treated with multiple
>> medications for that, yet there was never any testing or monitoring for
>> that, other than that which was reported by the family, and eventually, the
>> caregivers.  I do remember conversations which were absolutely normal,
>> reflecting a sense of the information, older memories, good judgement, and
>> then the next day she clearly did not remember that her husband had died
>>  10 years earlier.  Since her older sister also had some form of dementia,
>> it was assumed by most that this was a familial form of Alzheimers--those
>> the physician daughter of the sister who is a neurologist said that neither
>> had Alzheimer's, as per her review.
>>
>> So how is Alzheimer's really recognized, and how is it differentiated
>> from other forms of dementia, and how that that diagnosis challenge handled
>> in clinical settings?
>> Peggy
>>
>> Peggy Zuckerman
>> www.peggyRCC.com <http://www.peggyrcc.com/>
>>
>> On Wed, Jul 27, 2016 at 6:47 AM, HM Epstein <hmepstein at gmail.com
>> <javascript:_e(%7B%7D,'cvml','hmepstein at gmail.com');>> wrote:
>>
>>> Well, Bill, that's a good question that the article didn't address. It
>>> does say that men may contract Alzheimer's earlier than women do and that
>>> it impacts memory less frequently in men than it does women, hence the
>>> diagnostic difficulty. It also says that the disease progresses more
>>> rapidly in men than women.
>>>
>>> So I'll make an educated (though not medical school educated) guess
>>> based on those elements.
>>>
>>> When a man in his 60s with rapidly progressive Alzheimer's is not
>>> diagnosed it causes great harm to the wife, and other family members.
>>> According to the researcher, in addition to memory loss, Alzheimer's is
>>> associated with "language impairment, motor disfunction, behavioral
>>> issues and apathy". Behavioral issues include being argumentative and the
>>> disease often leads to violent tendencies. Being friends with some
>>> spouses of Alzheimer's patients, I can't imagine them having survived even
>>> the early symptoms without knowing why their husband or wife was acting so
>>> erratically. As one girlfriend told me when her husband was diagnosed with
>>> early onset Alzheimer's, "At least now I know why he was being such an
>>> a-----e."
>>>
>>> While there's no cure for Alzheimer's, there are treatments to mitigate
>>> some of the symptoms. And promising new clinical trials.
>>>
>>> As it is for most Dx errors, not having a diagnosis or having an
>>> incorrect diagnosis means a waste of time and money meeting with
>>> psychiatrists and neurologists, paying for and suffering through the side
>>> effects of the wrong meds. The expense of seeking a diagnosis wastes money
>>> desperately needed for care when the patient is no longer able to be alone.
>>>
>>> An early Alzheimer's diagnosis means that the family can plan and
>>> prepare, mentally, emotionally and financially for the nightmare years
>>> ahead.
>>>
>>> Will this study help physicians think of Alzheimer's when a male patient
>>> presents with the symptoms but without memory loss? Perhaps they might add
>>> a brain SPECT scan to the list of tests when the other tests come back
>>> negative. That's a proven way to identify Alzheimer's before waiting to
>>> autopsy the patient's brain.
>>>
>>> Those are my thoughts. What do the experts on this list think? Bill?
>>>
>>> Best,
>>> Helene
>>>
>>>
>>> *-- *
>>> *hmepstein.com <http://hmepstein.com/> *
>>> *@hmepstein*
>>> *Mobile: 914-522-2116 <914-522-2116>*
>>>
>>> *Sent from my iPhone*
>>>
>>>
>>>
>>> On Jul 27, 2016, at 6:03 AM, DR WILLIAM CORCORAN <
>>> williamcorcoran at sbcglobal.net
>>> <javascript:_e(%7B%7D,'cvml','williamcorcoran at sbcglobal.net');>> wrote:
>>>
>>> Helene,
>>>
>>> What harm resulted from the inaccurate diagnosis?
>>>
>>> What should we get out of this article?
>>>
>>> Take care,
>>>
>>> Bill Corcoran
>>>
>>>
>>> William  R. Corcoran, Ph.D., P.E.
>>> 21 Broadleaf Circle
>>> Windsor, CT 06095-1634
>>> 860-285-8779
>>> William.R.Corcoran at 1959.USNA.com
>>> <javascript:_e(%7B%7D,'cvml','William.R.Corcoran at 1959.usna.com');>
>>> http://www.linkedin.com/in/williamcorcoranphdpe
>>> https://www.box.com/shared/kfxg1lt9dh
>>>
>>>
>>>
>>> On Tuesday, July 26, 2016 8:45 PM, HM Epstein <hmepstein at GMAIL.COM
>>> <javascript:_e(%7B%7D,'cvml','hmepstein at gmail.com');>> wrote:
>>>
>>>
>>>
>>> "Thirty-four percent of the men with Alzheimer’s who donated their
>>> brains to the State of Florida brain bank were inaccurately diagnosed,
>>> researchers found. Only 22 percent of women with Alzheimer’s were
>>> misdiagnosed. Researchers were able to identify the donated brains as
>>> having come from people Alzheimer’s because of the presence of the tau and
>>> amyloid proteins found in the brain of someone with Alzheimer’s."
>>>
>>> http://jacksonville.com/news/health-and-fitness/2016-07-26/story/mayo-study-finds-men-alzheimers-are-misdiagnosed-more-often
>>>
>>> Best,
>>> Helene
>>> hmepstein.com
>>> @hmepstein <https://twitter.com/hmepstein>
>>> Mobile: 914-522-2116
>>>
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-- 
Bob Swerlick






Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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