Comments on W3C content on dementia

Hi Rachael and the W3C task force,

I wanted to follow up on my email with Rachael with some thoughts from
myself and Emma Dixon, a PhD student leading our project on designing
technology for people across the spectrum of dementia. The content below is
based on our research as well as research and advocacy by people with
dementia.

We are giving these ideas to you below as a first step, but we’d be more
than happy to be involved further in any way, or give you more
content/edited content/anything else. We are also in contact with some
leading members (with and without dementia) of different dementia groups
(including Dementia Action Alliance, Dementia Alliance International, and
Innovations in Dementia) -  we’d be happy to connect you with these groups
or even to work with them ourselves in iterating on any of this. Just
please let us know if you see any way we can contribute further!


Best,

Amanda and Emma

--

We have some suggestions of additional dimensions that we have found to be
very important for technology use for people with mild to moderate
dementia, that could potentially be included in the personas or the section
on ICT challenges:

   -

   We have found trust of the device or system to be integral. This could
   translate to the importance of technologies that communicate safe or unsafe
   sites to visit.
   -

   Some of our participants put all of their payments on auto-pay so as not
   to forget a bill payment and then they just verify their credit card
   statement.
   -

   Individuals have shared that when a screen is not visible, it is
   essentially gone for them. Therefore, seeing all possible documents at once
   is important to reduce confusion as opposed to folders.
   -

   Relatedly, spatial representations can be very important for technology
   use. For example, we have spoken to people that use spatial representations
   on their desktops as a sort of filing system.


Everything that the document notes for MCI could be said for people with
dementia as well, only magnified.

In terms of the characteristics of dementia, we think that the following
points are important to include:

   -

   It is great that the report describes the different types of dementia.
   Though there is tremendous variability even within a condition, it may be
   important to note that different types of dementia can affect individuals
   differently and uniquely (Meiland et al. 2017; Scherer et al. 2012).
   -

   Though cognitive changes are the most common changes discussed with
   dementia, there is an emerging understanding of the other kinds of changes
   that people experience, that will surely impact their technology use. Many
   of the points below come from a document (attached) written by a dementia
   advocate:
   -

      Sensitivity to loud and complex environments (overloaded by over
      stimulus) often with heightened sensitivity to sound
      -

      “brain blindness”: where the person has capable vision but the brain
      is no longer able to process or find the right match for what they’re
      seeing.
      -

      Contrast is very important because of changes in vision as a result
      of certain dementias
      -

      Color orientation is not always reliable for people with dementia
      because they may associate colors differently or not understand what the
      color is meant to represent
      -

      Avoid busy patterns because they are visually confusing



-- 
*Amanda Lazar* | Assistant Professor
(she/her/hers)
University of Maryland | College of Information Studies (iSchool)
Hornbake South | Room 2117D | College Park, MD 20742
<http://www.ischool.umd.edu>www.ischool.umd.edu | lazar@umd.edu
<mhinckle@umd.edu> | (301) 405-8550