1. Understanding workplace information needs and system design needs of people with dementia
Diane Pennington PhD FHEA FRSA
Lecturer in Information Science
@infogamerist /

2. How do we communicate?
(Evans, Robertson, & Candy, 2016, p. 808)

3. Dementia in the workplace
People are living and working longer
Early onset dementia (< 65) is underdiagnosed
Many, like my father, are “encouraged” or even forced to retire (Alzheimer’s Association, 2006)
Work can help people with dementia maintain quality of life and see improvement in symptoms (Wilson, 2005; Robertson & Evans, 2015)
Employers need to increase dementia awareness (McNamara, 2014)
HR staff want more training (Cox & Pardasani, 2016)
Employee health nurses should watch for symptoms (Lurati, 2014)
Lack of research on dementia in the workplace and an agenda is needed (Ritchie et al. 2015)
How do we support them?

4. The need for information science research in dementia care
ASIS&T 2015 panel: “How can information science contribute to Alzheimer’s disease research?”
Very little research in information needs for dementia, although information is important for dementia care (Span et al., 2013; Clarke, Alexjuk, & Gibb, 2011)
Needed for decision-making
Needs change throughout the progression
People with dementia, physicians, carers, have different needs
Professional information may “disrupt the biographical narrative that people with dementia value” (p. 237) because it is too biomedical and not focused on the person/experience

5. Reconceptualising “information” for dementia research
Information seeking for the “system” of people with and surrounding dementia is a constant state of being
Bates (2005, p. 1036) “Information 1” and “Information 2” are associated with “organization of matter and energy” and meaning ascribed to them
Organisation of language, understanding, and meaning becomes increasingly difficult and complex as dementia progresses

6. Dementia and other forms of information
Words may not be used correctly, but are still used (Kotai-Ewers, 2000)
Other methods of communication are better retained, such as songs and their lyrics (Brotons, 2000)
“Bodily information” or changes in cognitive and physical function is important in health information literacy (Yates, 2015)
What information types best reflect cognitive, physical, emotional information needs?
How can we best understand what (technology) systems will support them in the workplace?

7. Non-text formats for eliciting information from and communicating with people with dementia
Involving people with dementia at all stages of system development is essential (Span et al., 2013)
“Like many of us, information that is provided as a lot of text may be hard to take on board ­so information may be better communicated by being shared verbally as well, or presented in non-text formats such as a video clip on DVD or through pictures” (Clarke, Alexjuk, & Gibb, 2011, p. 239).

8. Improvement in communication and health through non-text methods
Movement, sound, visual art, performance, music (Aldridge, 2000; Beard, 2011)
(Riley, Alm, & Newell, 2009)

9. (Non-text) active participant engagement
Video recordings of observation
Video recordings of ethnomethodology to listen to dialogue but also observe non-verbal communication
Photovoice: participants take pictures on the research topic and are then interviewed on the photos
Evans, Robertson, and Candy, 2016: workplace return after an early onset diagnosis
4 areas: dementia impact, family impact, work experience, new friends
Photo elicitation: Discuss content, meaning of pictures in an interview
Reflexive photography: Photo and interview used to gather reactions
Photo-survey: Record environment with pictures during research
Photo-driving: Show pictures to participant of themselves during the interview to show their own behaviour

10. Analysis methods Theoretical framework
Type of document to analyse will determine what can be analysed
What has been elicited?
Images, videos, music, speech?
Scope/boundaries: what will be analysed?
Visual analysis will exclude accompanying text
“Photographic document” approach
Unit of analysis
The image? The collection?

11. Methods for analysing non-text documents created or gathered from people with dementia (Pennington, 2016)
Compositional interpretation
Qualitative and quantitative content analysis
Document analysis
Videography
Musical analysis
Cultural studies
Visual sociology/anthropology
Iconography/iconology
Visual discourse analysis
Visual social semiotics
Multimodal research/ethnography

12. An example - compositional interpretation: appearance of an image on its own
Content, colour, hue, spatial organisation, film editing, affective expression
(Evans, Robertson, & Candy, p. 809)

13. The future of understanding workplace information system needs
People with dementia have different notions of understanding their work and therefore struggle with communicating what information might help them perform work
New research methods are needed to elicit information and design needs from marginalised groups in the workplace
This can lead to 3 proposed agenda steps
refine (non-text?) methods for elicitation
have conversations (in whatever form) with affected workers
Develop better designed workplace supports and services

14. A great story
We ought to write a story like this You could go on and on for years We’ll make up a story The whole set You’re going to have a great story What a pity I didn’t write it up all over What is the hard part if you don’t remember them What is the pity of it if you don’t remember them It’s a strange world isn’t it? - Irene (Kotai-Ewers, 2000, p. 63)

15. My working model of a dementia ontology, with a PLWD at the centre