This document discusses supporting the information needs of people with dementia in the workplace. It notes that dementia is underdiagnosed in early onset cases and many people are forced to retire even though work can help maintain quality of life. More training is needed for employers on dementia awareness. Very little research has examined the information needs of those with dementia, though information is important for care. Non-text methods like images, video and music may better communicate information as dementia progresses. The document proposes using methods like photo elicitation and analyzing non-text documents created by patients to better understand their information needs in the workplace.

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