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56 Australian Journal of Dementia Care October/November 2016 Vol 5 No 5
required community travel.
Barriers and difficulties were also
identified including giving up driving;
difficulties with walking; getting lost and
feeling worried; having no reason to go
out or no one to go with and roads and
footpaths that felt dangerous.
Lionel*
Lionel described some difficulties he
encountered with community mobility
and how involving friends enabled him
to continue to visit the shopping centre:
“But I can get lost. I can go down there to the
damn store. I can get in there and then I
wonder where the dickens to get out of the
place, you know. And then I go down with
some friends. They go round like a rabbit and
they know exactly where to go, but I’m not
quite like that and that’s memory you know.”
Vera*
Vera described how the design of her
community affected her ability to walk to
complete necessary activities:
Vera: “If I had to go to the post office or go to
pay the rent, I would start to walk with my
stick, and then they had low walls around the
flat and I had to sit.”
Interviewer: “Okay. You’d use them as a
resting point? Very, very sensible.”
Vera: “So walk some more, and then sit by
the wall and rest, and that’s how I used to get
around.”
Interviewer: “Oh, okay.”
Vera: “But I couldn’t do that here, because
it’s …”.
Interviewer: “There’s not enough low
walls?”
Our research team is currently
mapping these barriers and enablers
from different clinical perspectives
(occupational therapy, physiotherapy,
psychology) onto existing clinical models
and evidence-based treatments to enable
development of clinical approaches to
support maintenance of lifespace and
continued community participation.
Understanding the barriers present
within our communities can also help
inform the development of universally
accessible or dementia-friendly
communities.
Future directions
Following this research, the Lifespace
app could be used more widely to
identify people who need support for
their community access and engagement.
The CSIRO’s Australian e-Health
Research Centre team involved in this
study is currently exploring ways to
make the app available to other
researchers.
Clinical interventions and supports to
address barriers and encourage
maintained lifespace will also be
developed, tested and translated into
practice by the lifespace research team.
Knowledge about barriers and desired
lifestyles will help inform the
development of accessible and friendly
communities.
Acknowledgment
This project is supported by a DCRC:
Assessment and Better Care Targeted Topic
Funding Grant.
* Pseudonyms used to protect the identity
of participants.
Reference
Liddle J, Ireland D, McBride SJ, Brauer SG, Hall
LM, Ding H, Karunanithi M, Hodges P,
Theodoros D, Silburn P, Chenery HJ (2014)
Measuring the lifespace of people with
Parkinson’s disease using smartphones: proof
of principle. JMIR mHealth and uHealth 2(1)
e13. Available at:
pubmed/25100206
Dr Jacki Liddle
(pictured) is an
occupational therapist
and DCRC: ABC
research collaborator
and Postdoctoral
Research Fellow at the
Asia-Pacific Centre for
Neuromodulation,
Queensland Brain Institute, University of
Queensland; David Ireland is engineer and
research scientist at The Australian e-Health
Research Centre, Digital Productivity and
Services Flagship, CSIRO; Fleur Harrison is
research assistant at the DCRC: ABC and
Centre for Healthy Brain Ageing (CHeBA),
UNSW Australia; Louise Gustafsson is
Associate Professor of Occupational Therapy at
the School of Health and Rehabilitation
Sciences, University of Queensland; Sandy
Brauer is Professor and Head of Physiotherapy
at the School of Health and Rehabilitation
Sciences, University of Queensland; Dr Robyn
Lamont is Postdoctoral Research Fellow at the
School of Health and Rehabilitation Sciences,
University of Queensland; Dr Theresa Scott is
psychologist and NHMRC-ARC Dementia
Research Development Fellow with School of
Medicine at the University of Queensland;
Nancy A Pachana is Professor of Clinical
Geropsychology, School of Psychology and co-
director, Ageing Mind Initiative, University of
Queensland; Perminder Sachdev is Scientia
Professor of Neuropsychiatry and Co-Director
of CHeBA, UNSW Australia and Clinical Director
of the Neuropsychiatric Institute, Prince of
Wales Hospital, Sydney; Dr Kristan Kang is data
manager at CHeBA; and Henry Brodaty is
Scientia Professor, DCRC: ABC and Co-
Director of CHeBA. To follow up on this article
contact Jacki at
DCRC SPEC I AL I SSUE : THE B I G P I CTURE I N DEMENT I A RESEARCH
The ethics of passive monitoring
When designing the lifespace study and associated technology (described in the main
article), the ethics of passively monitoring people were carefully considered (Carter et
al 2015).
As the information collection did not require participants to actively decide to send data
each day (it streamed automatically after initial consent), we needed to develop a way
for people to choose how they participated. To give participants a simple way to opt
out of data collection at any time we designed beacons with clear on/off buttons, gave
simple written instructions about what information was being collected and how to opt
out.
Opting out involved turning off the phone or simply not taking it. We purposefully did
not ask participants questions about missing data (as part of supporting their choice
to opt out of any aspect of data collection without consequence).
We gave participants a map showing their lifespace for the week (the community
locations they had recorded) and they indicated whether this matched their memory
of where they went in the community.
Only one participant clearly opted out of some final days of the study by packing up
the beacons and phone. She expressed concern that the technology may have been
responsible for a disruption to her electricity supply.
Some participants described short periods of time where they expected there would
be no lifespace data (for example, if a phone was left on a charger for a few hours).
We also gave participants a phone number for support and a summary of the data they
had collected after the week.
Reference
Carter A, Liddle J, Hall W, Chenery H (2015) Mobile phones in research and treatment: ethical
guidelines and future directions. JMIR mHealth and uHealth 3(4) e95. Available at: