=Paper=
{{Paper
|id=Vol-1528/paper6
|storemode=property
|title=Improving Daily Life for People with Dementia – An Observation Study
|pdfUrl=https://ceur-ws.org/Vol-1528/paper6.pdf
|volume=Vol-1528
|dblpUrl=https://dblp.org/rec/conf/ami/BoppETL15
}}
==Improving Daily Life for People with Dementia – An Observation Study==
https://ceur-ws.org/Vol-1528/paper6.pdf
Improving Daily Life for People with Dementia – An
Observation Study
Valeria Bopp, Stefanie Ebert, Robert Tscharn, Nam Tung Ly 1 0F
Psychologische Ergonomie, Julius-Maximilians-Universität, Würzburg, 97074, Germany
v.bopp@gmx.net, stefanie-ebert@gmx.de,
robert.tscharn@uni-wuerzburg.de, nam.ly-tung@uni-wuerzburg.de
Abstract. Residential nursing homes will face an increasing percentage of Peo-
ple with Dementia (PwD). In order to understand the needs and desires of this
user group, an observation study was conducted in a nursing home near Würz-
burg, Germany. The observation data, conversations with relatives and caregiv-
ers of PwD were clustered into an affinity diagram. The results showed basic
needs of PwD, their daily life at a care facility, and problems they are facing. In
this paper, we describe ideas for designing assistive technologies that encourage
PwD to do exercises and to walk in a certain direction, which were expected to
improve the quality of life of PwD.
1 Introduction
Due to demographic changes [1, 10], the number of People with Dementia (PwD)
is increasing dramatically [9]. In Germany, the majority of residents living in nursing
homes suffered from dementia [5].
To date, most technological approaches focused on people with mild dementia [7]
and the use of touch screens [3], aimed at facilitation of caretaking [2] or security
issues [6]. Our target group otherwise was people with moderate and severe dementia,
who were living in a care facility, and were not able to use smartphones or tablets
according to pilot usability tests. We focused on fostering PwD’ independence, self-
esteem and quality of life using user-centered approach, which got PwD involved in
both gathering information phase and designing phase.
Our study was to determine the main factors, which impair PwD’ daily life at the
nursing home and to find designing ideas to counteract these factors. The data collect-
ed from this study was clustered using the affinity diagram method to find the critical
and valuable aspects for designing process. The method is an enhanced way of brain-
storming [4].
1
Copyright © 2015 for this paper by its authors. Copying permitted for private and academic
purposes.
2 Methods
Setting: The study took place in a 26-bed nursing ward, where half of residents
suffered from different stages of dementia.
Participants: We had 8 participants, who got dementia and had mobility. Their
ages ranged from 82 up to 94 years. A statement of informed consent were given and
signed by a family member or legal guardian of each participant.
Observation: Participants were observed by two bachelor students who had
learned how to observe unbiased and were experienced in user-centered techniques.
Two weeks of full-time ethnographic observations was conducted in October 2014.
Observation continued in the following four to six weeks besides conducting another
study, which focused on visual orientation cues.
The observers first spent two days for getting familiar with environment, caregiv-
ers, as well as letting PwD get used to their presence. In the following days, they
started communicating with PwD as they slowly began to lose their shyness.
Collected Data: General behavior and procedures of activities of PwD as well as
conversation data (with PwD, their relatives and caregivers) were noted down.
The observers also recorded participants’ habits, likes and dislikes, biographies,
typical daily routine, movement patterns (e.g. PwD moved faster when they were
going to the toilet), and strange behavior. All of that information will be useful for the
intelligent system to recognize current activity and state of PwD, and their intention.
Affinity Diagram and Design Ideas: Data was clustered using the affinity dia-
gram method [4]. During the process, every fact about or comment from the PwD was
written down on yellow Post-its® (first level). Each note needed to be understandable
on its own. The notes were read through by two researchers independently to gain an
overall understanding. After that, the data was clustered and grouped into higher lev-
els (blue, pink, and green) by theme. For example, a blue note “I am restless” was
moved to be near another similar blue note “We run around and interrupt our meals
for it”. The higher level of affinity notes contained information of all subordinate
notes. The highest level groups (green) normally consisted of one or two keywords
per category, e.g. “loss of personality”. Finally, for further refinement and verifica-
tion, the two researchers critically discussed and reviewed the diagram until they
reached an agreement.
After finishing the affinity diagram, design ideas addressing the most important
problems stated in the diagram were noted down. The most promising and innovative
design ideas were worked on by iterative drafting and building of prototypes.
3 Preliminary Results
The observation data, which was clustered by the affinity diagram, showed follow-
ing insights. On the subject of navigation and orientation, the data revealed that the
PwD in the facility were unlikely to move to a specific location by themselves as they
were always accompanied by a caregiver. They used the handrails on the sides of the
corridors almost all the time, even when holding a person’s hand or sitting in the
wheelchair. The handrails seemed to be an appropriate place to incorporate a naviga-
tional aid (Handrails as Guides). Due to existing hints that light could serve as navi-
gational cue, the idea that the handrail with an LED-Strip emerged. The LEDs should
be enlightened brightly in front of the PwD and deactivated after them in order to
guide them in a primitive and effective way.
The PwD apparently did not engage in any activity by themselves except for din-
ing. They sat around most of the time but seemed much more active when others
started conversations with them. Also, they mimicked exercises during a weekly
gymnastics session and sometimes imitated examiners’ movements. They obviously
needed to be activated by others, either through direct approach such as conversation
and touch or passive approach by watching others being active. This was especially
successful if the counterpart was younger and lively such as children, visiting dogs or
the experimenters. The assumption arose that PwD liked these “activating counter-
parts” because PwD probably felt that these younger and less harmful counterparts
would not judge, insult or scold them for behaving inappropriately. The PwD also
reacted much more actively to movement such as people or animals running around or
gesturing a lot while talking to or standing near PwD. These observations led to the
idea of a human-like avatar presented as interactive video on the walls of the facility
similar to existing exercise programs (Gymnastics avatar). In order to be successful,
the avatar should create the impression that it would never judge a person with de-
mentia for making mistakes. Instead, it should motivate PwD to join in their exercis-
ing to activate them. Furthermore, the avatar needs to address the people to refocus
their attention. According to the observers’ experiences, this is best done by doing
movements and calling the person’s name (e.g. “Mrs. Smith, come on, let’s do some
exercises). An avatar would allow PwD to do exercise independently at any time they
want without a need for instructors or caregivers.
4 Discussion
As opinions of caregivers and relatives were sometimes contrary to observations
made in this study, we believed that designing ideas based on information from care-
givers and family members were not sufficient. We suggested that the end-users
(PwD) clearly need to be involved in the designing and evaluating phase. Through the
studies using user-centered approach, we tried to address PwD’ needs and desires, and
implement assistive technologies to solve those issues.
Our designing ideas addressed the need to activate the PwD doing gymnastics and
to help them navigate in the facility independently. Other ideas concerning appropri-
ate caretaking (i.e. ensuring appropriate hydration, medication and food supply) are
being refined and built into prototypes. Those ideas will be tested and evaluated with
caregivers and PwD.
5 Acknowledgement
We would like to thank the Bayerische Forschungsstiftung for funding the work
presented in this paper.
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