RE: {Disarmed} RE: A proposal for updating the aging and dementia section of user research

I think this is something we also have to be aware of when writing journal papers.  It is such a mine field - here is the advice from a style guide with 'normal' and 'abnormal' being avoided if possible. http://www.apastyle.org/manual/related/nonhandicapping-language.aspx

Best wishes
E.A.

Mrs E.A. Draffan
WAIS, ECS , University of Southampton
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From: Rochford, John [mailto:john.rochford@umassmed.edu]
Sent: 10 May 2015 17:36
To: mike.pluke@castle-consult.com; lisa.seeman@zoho.com; ryladog@gmail.com
Cc: public-cognitive-a11y-tf@w3.org
Subject: {Disarmed} RE: A proposal for updating the aging and dementia section of user research

Hi Mike,

I think "in the range of one and two standard deviations below appropriate norms" is reasonable and a good way to characterize "abnormal". On another note, at least in the U. S., people with disabilities are sensitive to references to "normal" and "abnormal". Instead, we use "typical" and "atypical".
John

John Rochford
Director, INDEX Program
Instructor, Family Medicine and Community Health
Eunice Kennedy Shriver Center
University of Massachusetts Medical School MailScanner has detected a possible fraud attempt from "<="" b="">
www.DisabilityInfo.org<http://%3cbr/%3ewww.DisabilityInfo.org>
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_____________________________
From:Michael Pluke
Subject:RE: A proposal for updating the aging and dementia section of user   research
To:Rochford, John, lisa.seeman, Katie Haritos-Shea GMAIL
Cc:'public-cognitive-a11y-tf'



Hi John et al

I think that the term "abnormal" is probably impossible to define - it is a shorthand term I chose when giving a brief outline about what needed to be said in a re-written introduction to this section. I was not necessarily suggesting that we need to use this word, but even if we do not, the problem remains.

DSM-5 does not use the term "mild cognitive impairment" but its mild Neurocognitive Disorder (NCD) seems to be very similar. Regarding mild NCD, DSM-5 says:

"The differential diagnosis between normal cognition and mild NCD, as between mild and major NCD, is challenging because the boundaries are inherently arbitrary."

Its definition includes "There is evidence of modest cognitive decline from a previous level of performance ... in the range of one and two standard deviations below appropriate norms".

I searched for some more useful guidance that would help us to propose when normal minor gradual decline in many functions (physical, sensory as well as cognitive) turns into "mild cognitive impairment". >From other sources that I have looked at, it seems like it may be where the previously unnoticed decline becomes noticeable that MCI may be proposed. It also seems to be the case that MCI is a strong indicator, but not a guarantee, of a later more significant decline into Alzheimer's.

Being able to find the right words to use highlights the general risk that the user research document should not appear to be acting as a definitive guide to the complex definition of and detection of these difficult to define conditions.

I could take as stab at some suitable wording, but whatever is written it will be open to disagreement as there is already notable disagreement within the medical and caring professions!

Best regards

Mike

From: Rochford, John [mailto:john.rochford@umassmed.edu]
Sent: 10 May 2015 16:05
To: lisa.seeman; Katie Haritos-Shea GMAIL
Cc: Michael Pluke; 'public-cognitive-a11y-tf'
Subject: RE: A proposal for updating the aging and dementia section of user research

Hi Lisa,

That is a good approach. The only (small) issue I have is that "abnormal" may be quite difficult to define. If we have to, I suggest an aggregate definition with a note that it would have to be evaluated on a case-by-case basis per individual.

John

John Rochford<http://profiles.umassmed.edu/profiles/display/132901>
UMass Medical School/E.K. Shriver Center
Director, INDEX Program
Instructor, Family Medicine & Community Health
www.DisabilityInfo.org<http://www.DisabilityInfo.org>
Twitter: @ClearHelper<https://twitter.com/clearhelper>
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From: lisa.seeman [mailto:lisa.seeman@zoho.com]
Sent: Sunday, May 10, 2015 2:34 AM
To: Katie Haritos-Shea GMAIL
Cc: Rochford, John; 'Michael Pluke'; 'public-cognitive-a11y-tf'
Subject: RE: A proposal for updating the aging and dementia section of user research

Can we see if we have consensus on the first item -
Re-title the section "Mild Cognitive Impairment and Dementia".
The introduction can explain that things such as memory loss can often increase with age but it is only when this is abnormal that it gets classified as Mild Cognitive Impairment or, if worse as one of the forms of dementia, most typically Alzheimer's

Katie, John, do you have any issues with this?
All the best

Lisa Seeman

Athena ICT Accessibility Projects <http://accessibility.athena-ict.com>
LinkedIn<http://il.linkedin.com/in/lisaseeman/>, Twitter<https://twitter.com/SeemanLisa>


---- On Mon, 04 May 2015 16:54:23 +0300 Katie Haritos-Shea GMAIL<ryladog@gmail.com<mailto:ryladog@gmail.com>> wrote ----

While I agree that this section needs clearing up, I do not agree to all of these changes. I will be on the will today,,,,







* katie *



Katie Haritos-Shea
Senior Accessibility SME (WCAG/Section 508/ADA/AODA)



Cell: 703-371-5545 | ryladog@gmail.com<mailto:ryladog@gmail.com> | Oakton, VA | LinkedIn Profile<http://www.linkedin.com/in/katieharitosshea/> | Office: 703-371-5545



From: Rochford, John [mailto:john.rochford@umassmed.edu]
Sent: Monday, May 4, 2015 8:55 AM
To: Michael Pluke; public-cognitive-a11y-tf
Subject: RE: A proposal for updating the aging and dementia section of user research



Hi Mike,



+1 from me.



John



John Rochford

UMass Medical School/E.K. Shriver Center

Director, INDEX Program

Instructor, Family Medicine & Community Health

http://www.DisabilityInfo.org

Twitter: @ClearHelper

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

MailScanner has detected a possible fraud attempt from "www.facebook.com" claiming to be From: Michael Pluke [mailto:Mike.Pluke@castle-consult.com]
Sent: Sunday, May 03, 2015 4:08 PM
To: public-cognitive-a11y-tf
Subject: A proposal for updating the aging and dementia section of user research<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

Before any changes are made to the "Aging and Dementia" section of the User Research document I would like to get agreement to an overall approach that hopefully avoids the impression that aging is in itself a cognitive  condition.<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

I propose that we should:<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

-          Re-title the section "Mild Cognitive Impairment and Dementia".
The introduction can explain that things such as memory loss can often increase with age but it is only when this is abnormal that it gets classified as Mild Cognitive Impairment or, if worse as one of the forms of dementia, most typically Alzheimer's.<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

-          Change the heading "Symptoms" into "Challenges".
The aphasia and dyslexia sections have separate headings "symptoms" and "challenges" but as we are not trying to supersede standards like DSM-5 it probably isn't wise to try to give a supposedly authoritative list of symptoms. The existing content is a very reasonable set of challenges that many people with various forms of dementia may experience. Also people who are normally aging will also experience some of these.<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

-          Give one list of challenges that apply to all of the categories under this heading e.g. MCI, Alzheimer's, other forms of dementia and even aging.
The existing document gives four different lists of "symptoms" for:<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

o   "Common Symptoms of Cognitive Decline Due to Both Aging and Dementia",<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

o   "Symptoms of Cognitive Decline Due to Aging" and,<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

o   "Symptoms of Alzheimer's"<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

o   "Symptoms of Less-Common Dementia (Non-Alzheimer's)"<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

but it is exactly the same list apart from the addition of one extra "symptom" for  Alzheimer's and a few minor additional notes in places. These minor changes could be details added to the single list.<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

If this overall approach is acceptable, then changes can begin to be made in line with the above.<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

Best regards<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

 <http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>

Mike<http://www.facebook.com/pages/New-England-INDEXShriver-CenterUMass-Medical-School/227064920160>