ACM MobileHCI 2013 paper - Information Services and Technology

MOBILE HCI 2013 – POSTERS
AUGUST 29th, 2013 – MUNICH, GERMANY
Lessons Learned from Participatory
Design with and for People with
Dementia
Julia M. Mayer
Abstract
Information Systems Department
In this paper we describe challenges and lessons
learned from developing a mobile touch screen based
assistive tool for people with dementia. We focus not on
features of the tool but the general participatory design
process that was applied. Insights presented are gained
from interviews, focus groups and observations. We
found that projecting problems on imaginary characters
and using simple games specifically customized for
people with dementia ease the process of eliciting user
needs and realistic prototypes allow design evaluations
with people with dementia early on.
New Jersey Institute of Technology
jam45@njit.edu
Jelena Zach
Design Research Lab
Universität der Künste Berlin
j.zach@udk-berlin.de
Author Keywords
Participatory design; dementia; assistive technology
ACM Classification Keywords
H1.2. User/Machine Systems: Human Factors.
H5.2. User Interfaces: User-centered design.
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MobileHCI '13, Aug 27-30 2013, Munich, Germany
ACM 978-1-4503-2273-7/13/08.
http://dx.doi.org/10.1145/2493190.2494436
General Terms
Design, Human Factors
Introduction
With 35.6 million people with dementia worldwide and
7.7 million new cases registered every year (as of April
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2012 [1]), it is becoming a prominent research
challenge to design assistive technologies to support
people with dementia. Dementia causes a progressive
deterioration of the cognitive activity within a person’s
brain. While dementia is not a disease itself, the term is
used to describe a group of symptoms that are caused
by various diseases or conditions, with the most
common and well-known being the Alzheimer Disease.
Symptoms can include loss of memory, thinking and
reasoning, communication problems and recurring
feelings of isolation, confusion and loneliness. Simple
tasks like making a cup of tea become challenging or
impossible. With progression of the symptoms, patients
are increasingly dependent on others to manage their
day-to-day life. Taking care of people with dementia
can be a difficult and exhausting task demanding a lot
of attention and patience from relatives and nurses.
Figure 1. Touch screen based
platform for people with dementia
developed as part of this project.
(Photo by Matthias Steffen)
Until recently, assistive technologies for people with
dementia have mainly focused on ensuring safety and
security of dementia patients [2]. However, latest
efforts started focusing more on positively affecting
patients’ quality of life, i.e. helping them perform
activities of daily life [3], maintaining social contacts
[4], organizing their day [5], playing games [6] and
supporting reminiscence therapy [7]. Designing these
kinds of technologies with the aim to enhance quality of
life for people with dementia requires a deep
understanding of symptoms, problems and user needs.
Participatory design implies active involvement of the
people designed for and other stakeholders in the
design work [8] and has been applied previously with
people with dementia [9]. However, when working with
people with dementia, traditional participatory methods
are often not sufficient and there is only limited insight
available as to how to conduct user studies and codesign with dementia patients.
In this paper, we present lessons learned from
developing a touch screen based assistive tool for
people with dementia. We identified challenges related
to traditional methods of participatory design and
discuss how we altered and enriched methods to be
effective in the context of designing with and for people
with dementia. Furthermore, we present guidelines
derived from previous literature and our ethnographic
field work including interviews, participant observation
and focus groups.
Project Background
The aim of the project was to develop a touch screen
based platform that supports people with dementia
living at home, helping them perform their daily tasks
and activities, encouraging them to maintain social
contacts, and structuring their day (Figure 1). The main
target user group was people with mild cognitive
impairment (MCI) and in early to mid stages of
dementia. We used participatory design activities and
involved them throughout the entire design process to
gain better insight about dementia and also to identify
design opportunities.
Understanding the User
Before we worked with people with dementia we had to
understand the symptoms and resulting problems
caused by dementia. After extensive literature review
and competitive analysis we interviewed four experts
(two people working for the German Alzheimer
Association, one therapists working with people with
dementia in a hospital, one psychiatrist), one caretaker
(a volunteer from the German Alzheimer Association),
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Figure 2. Ms. Schmidt’s Problems
used in Focus Groups
AUGUST 29th, 2013 – MUNICH, GERMANY
and one relative (son) of a person with dementia. In
our interviews we asked questions regarding dementia
in general, their experience with mobile touch-based
assistive technologies in the dementia sector and their
recommendations on how to design such assistive
technologies for dementia patients. Furthermore, we
asked them for recommendations on how to best
approach and work with people with dementia. While
this is a standard approach when designing for
dementia patients it is often criticized for not
sufficiently involving the actual target users [10]. For
us, it proved to be useful to guide not only our designs
but also the observations and focus groups with people
with dementia.
Observations and Focus Groups
We conducted participant observation and focus groups
at two different day care groups of the “Caritas”
(charity institution) in a major German urban area with
participants at different stages of dementia (N1=5, all
female, N2=6, 1 male). The goal of the focus groups
was to discuss problems we previously identified from
literature review, competitive analysis and interviews
including reminding and calendar practices, daily
routine, phone/TV usage, social activities, motivation,
and social isolation. While we found it very valuable to
consult directly with people with dementia and their
caregivers, we faced different challenges throughout
the participatory design process.
Figure 3. Puzzle Game used to
Evoke Discussions
Challenges
1) It is not always possible to build a continuing
relationship with study participants due to
progression of symptoms that lead to inability to
remember new people and information.
2)
3)
Eliciting user needs is hard because people with
dementia often do not want to admit, are not
aware, or cannot communicate their problems,
weaknesses, needs and current practices.
Following a fixed protocol for a focus group or
interview is hard because people with dementia
sometimes have strong mood swings, depressions,
and short attention spans.
Our Approach and Lessons Learned
We visited both groups several times with the aim of
building up trust and creating a relationship. During
initial visits we mainly socialized and participated in
activities like singing or playing games. While some
patients in earlier stages of dementia recognized us
again, people with further progressed dementia did not
remember us when we returned.
PROJECT PROBLEMS ONTO A FICTIONAL CHARACTER
In order to create an atmosphere where dementia
patients are comfortable to talk about their problems,
we came up with the idea to introduce an imaginary
character with common problems people with dementia
face, an elderly women we named “Ms. Schmidt”
(Figure 2). We used storytelling techniques and speech
bubbles to describe various problem scenarios as from
the perspective of Ms. Schmidt, e.g., “Ms. Schmidt
cannot use her phone anymore but would like to have
more interactions with her children and grandchildren”
and then asked the participants if they had similar or
related problems. We learned that it is much easier for
people with dementia to admit and talk about their own
problems when referring to another person and when
not feeling alone with their problems.
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USE PICTURES TO EVOKE MEMORIES AND INTRODUCE
Prototype Evaluation
DISCUSSION TOPICS
We conducted design evaluations of our tablet PC
application at different stages of prototype
development with four people with mild cognitive
impairments and one participant who had a form of
partially reversible dementia due to an illness and was
able to reflect on own memory loss.
We used pictures to bring the stories and problems of
Ms. Schmidt to life (Figure 2 and 3). For each problem
scenario of Ms. Schmidt we created speech bubbles
with pictures representing the discussion topic. We
used short and concise statements together with
pictures of old phones, calendars, cork boards and
game boards (see guideline 1) to create familiar
associations and evoke memories.
BE PLAYFUL
We designed and played different games like ‘memory’
and puzzles as part of the focus group (Figure 3). The
images on in the ‘memory’ game cards and puzzles
were used to start a discussion about topic. The groups
enjoyed the games and, this way, did not feel forced
into a certain discussion topic. We found that it is
important to adjust the difficulty level of the games to
the group as we observed that some people were not
able to solve our puzzles while others were not
challenged at all due to very different stages of
dementia.
BE FLEXIBLE AND EMPATHIC
The conditions and moods of dementia patients can
severely change within short periods of time. At times,
we were confronted with negative or indifferent
attitudes during focus groups. We learned that it is
important not to strictly follow a protocol but instead
prepare several activities, tasks and games that can be
used flexibly to lift up the atmosphere in the group and,
if necessary, change topics.
Challenges
1) As dementia becomes more common with older
age, most people we worked with were 60+ and
had little to no experience with modern technology.
They were often scared to break things or do the
wrong thing. We are aware that this might change
soon as the next generation of elderly is already
becoming much more tech-savvy.
2) People with dementia can often not imagine how a
non-functional paper prototype is supposed to work
and therefore cannot evaluate early-stage designs.
Our Approach and Lessons Learned
REDUCE FEAR AND ANXIETY
Due to unfamiliarity with modern mobile technologies,
we started the sessions with getting accustomed with
the tablet PC and touch screen interaction. It was
important to assure that they cannot do anything
wrong or break anything. While they needed a lot of
initial guidance and explanations (see guideline 5), they
got more open to explore and try different things after
a short period of time.
BUILD REALISTIC PROTOTYPES EARLY ON
We traversed through an iterative scenario-based
design process starting with wireframing and paper
prototypes. We then rapidly moved to high-fidelity,
more realistic looking prototypes on the tablet PC using
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static interface designs and simple click-through
scenarios, which were then tested and evaluated
together with people with dementia. Participants
reacted positively to our basic, mostly non-functional
but high-fidelity prototypes and were able to
understand what the interfaces were supposed to do.
Realistic prototypes allowed us to elicit valuable
feedback on how they would like to interact with the
interface and what functionality it should have early on.
have quick response times, or it will lead to confusion
and frustrations and will not be accepted.
Guidelines
5) Learnability and Clear Instructions – People with
dementia may have to re-learn the interface every time
they use it. Therefore, learnability and memorability are
essential. Clear affordances help users to know
implicitly what to do. Pictures or videos of tasks to be
imitated can help.
As result from our interviews, literature review,
observations and workshops, we gained valuable
insights about how to work with and design for people
with dementia. Several themes emerged that we
compiled into the following guidelines:
1) Familiarity and Emotions – Design components
based around old and strong memories and meaningful
items that people are still able to handle, like cork pin
boards or old phones with big buttons, can be used to
evoke understandable associations. Familiar music or
pictures can comfort users and lift them up emotionally.
2) Minimize complexity and choice and emphasize
clarity and simplicity – People with dementia have
difficulties making decisions, therefore, choices for the
user should be avoided or kept to a minimum. Too
many buttons and options lead to confusion.
3) First Impression and Acceptance – The first
presentation of the interface should evoke curiosity and
be attractive to ease acceptance. The design should be
non-stigmatizing (i.e., not putting the illness in center
of attention). The technology needs to be reliable and
4) Positive and Supportive Feedback – Due to the
inexperience with new technologies, people with
dementia tend to be scared and insecure with using
new technologies. The interfaces should always
reassure users that they are doing the right thing while
addressing all senses (vision, hearing, touching).
6) Involve Caretakers and Relatives – As the dementia
progresses, caretakers and relatives may have to help
the patients to use the system or device. Allowing them
to use it together can extend the time the system can
be used by the dementia patient.
7) Visual Design – In order to make the visual interface
easy to understand it is advised to utilize bright colors
and high contrasts, e.g. black and white, no greyscales. Two-dimensional and minimalistic designs are
recommended. Pictograms and metaphors, that are not
too modern or abstract, are very useful to make users
understand unfamiliar interfaces and interactions.
Conclusion
We described challenges and lessons learned associated
with participatory design with and for people with
dementia. We found that techniques like projecting
problems on imaginary characters and using simple
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games specifically designed for people with dementia
ease the process of eliciting user needs. Furthermore,
building realistic high-fidelity prototypes allow design
evaluations with people with dementia early on. Our
lessons learned helped us to derive design guidelines
and highlight that people with early stage dementia can
be actively involved throughout the entire research and
development process. The question if this process still
can be considered ‘participatory design’ is open for
future discussion. Dementia patients were not actively
designing interfaces but instead were mainly involved
reactively. While this could be deemed as more of a
multi-faceted user-centered design instead of true
participatory design, we believe our lessons learned will
help other researchers and designers to develop usercentered assistive technologies with and for people with
dementia.
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