SIG USE workshop - #ASIST2016

1. Supporting workplace information needs of
people with dementia
Dr Diane Rasmussen Pennington
@infogamerist / diane.pennington@strath.ac.uk
Lecturer in Information Science
University of Strathclyde, Glasgow, Scotland

2. 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)
A great story

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

4. • Brain diseases that cause memory loss,
aphasia, decreased social inhibition
• No cure
• Dementia is not a normal part of aging
(although some decrease in memory is)
• Stigma and “death sentence” can decrease
quality of life and prognosis (Howarth &
Olson, 2013)
– People with dementia may not actually become
unaware of surroundings (Clare et al., 2008)
– Right to dignity and respect in care and research
Dementia

5. Dementia in the workplace:
The case of my father, Dave

6. • 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 alk. 2015)
• How do we support them?
Dementia in the workplace

7. • 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
– Patients, physicians, family 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
The need for information science
research in dementia care

8. • 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
Reconceptualising “information” for
dementia research

9. • 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 needs and
systems will support them in the workplace?
Dementia and other forms of
information

10. • Involving dementia patients 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).
Different formats for eliciting and
communicating information with
dementia patients

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

12. Questions to answer for non-text
research design for workers with
dementia
• 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
– Consider my “photographic document” approach
• Unit of analysis
– The image? The collection?

13. (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

14. • 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
(Evans, Robertson, & Candy, 2016)
Other approaches to working with
photographs as a research method

15. • 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
Methods for analysing non-text documents
created or gathered from patients
(Rasmussen Pennington, in press)

16. 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)

17. • Dementia patients 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 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
Final thoughts

18. I just want to be at home.
I have a right to this part
of the end of my life.
Yes, I am wringing my hands. I can’t cope.
I have a right to a life of my own.
I am really very angry.
I just want to be at home – and be myself.
Do you have any ideas?
- May (Kotai-Ewers, 2000)
Being Myself