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

Peggy Zuckerman peggyzuckerman at GMAIL.COM
Wed Jul 27 19:21:30 UTC 2016


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


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