Supporting workplace information needs of people with dementia

Dr Diane Rasmussen Pennington@infogamerist / diane.pennington@strath.ac.ukLecturer in Information ScienceUniversity of Strathclyde, Glasgow, Scotland

We ought to write a story like thisYou could go on and on for yearsWe’ll make up a storyThe whole setYou’re going to have a great storyWhat a pity I didn’t write it up all overWhat is the hard part if you don’t remember themWhat is the pity of it if you don’t remember themIt’s a strange world isn’t it? - Irene(Kotai-Ewers, 2000, p. 63)

A great story

(Evans, Robertson, & Candy, 2016, p. 808)

How do we communicate?

• 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

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

• 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

• 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

• 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

• 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

• 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

• Movement, sound, visual art, performance, music (Aldridge, 2000; Beard, 2011)

(Riley, Alm, & Newell, 2009)

Improvement in communication and health through non-text methods

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?

(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

(Evans, Robertson, & Candy, 2016)

Other approaches to working with photographs as a research method

• 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)

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)

• 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

I just want to be at home. I have a right to this partof 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