Technology as an Area of Conflict between Autonomy and Safety
Acceptance and Attitudes of Family Caregivers in Regard to Technical Assistance
to Ensure Safe Areas of Movement for People with Dementia Diseases
Irene Müller, Matthias Mertin and Ariane Rolf M.A.
University of Applied Sciences Bielefeld, Faculty of Business and Health
Interaktion 1, Bielefeld, Germany
Keywords: Dementia, Wandering, GPS System, Family Caregiver, Safety, Autonomy, Ethics.
Abstract: Family caregivers take on a responsible task when caring for people with dementia showing the phenome-
non of wandering. Technical systems like Global Positioning Systems (GPS) could support them in this re-
spect. So far, there are no empirical studies in the German-speaking area that illustrate the attitude and ac-
ceptance of family caregivers on this subject. The subjective perspective of the family caregivers has now
been ascertained after a systematic literature review and the selection of a qualitative research design based
on n=14 problem-centered interviews. As a result, family caregivers endorse the use of technical devices to
ensure safe areas of movement for people with dementia in cases where the benefit is recognizable and the
handling is uncomplicated. Ethical questions are a major challenge for family caregivers as they have to
make decisions for people with dementia that conflicts with autonomy and safety.
1 INTRODUCTION
The utilization of technical devices for domestic use
as information and communication systems or for
entertainment and occupation represents a daily
routine for most people. Technical devices are also
entering the caregiving and nursing field of people
with dementia, who have the symptom of wander-
ing. For this group of people, wandering is associat-
ed with maintaining their own identity, with the
reduction of negative emotions, with self-
determination and autonomy, as well as physical
exercise. At the same time wandering is connected
with several risks and dangers, e.g. getting lost, and
accidents. Family caregivers, who take care of about
75% of people with dementia, are confronted with
many decisions and challenges. In the present study
the apparent logical consequence to the use of tech-
nical devices to create safe areas of movement was
investigated from the perspective of family caregiv-
ers.
2 THEORETICAL
BACKGROUND
2.1 Dementia and Wandering
The adaptability of people with dementia to their
environment is reduced due to disorders of their
cortical functions like memory, orientation, speech,
and judgment (International Classification of Dis-
eases, 2016; Marquardt and Schmieg, 2009). As a
consequence, people with dementia experience an
increasing threat to personal identity (Bunn et al.,
2012). They struggle to meet central needs, such as
the continuation of their lifestyle habits, the mainte-
nance of their own identity, and the management of
an autonomous life (Sütterlin, Hoßmann and Kling-
holz, 2011; Robinson et al., 2007a). Apart from
symptoms, such as word-finding disorders, difficul-
ties with everyday planning, and problems with the
short-term memory, the symptom of wandering
occurs in 15% to 60% of people with dementia. In
literature, where different causes and manifestations
are discussed, up to now no consistent definition of
the phenomenon of wandering exists (Graham,
2015; Halek and Bartholomeyczick, 2012; Houston
Müller, I., Mertin, M. and M.A., R.
Technology as an Area of Conflict between Autonomy and Safety - Acceptance and Attitudes of Family Caregivers in Regard to Technical Assistance to Ensure Safe Areas of Movement for
People with Dementia Diseases.
DOI: 10.5220/0006283001270134
In Proceedings of the 3rd International Conference on Information and Communication Technologies for Ageing Well and e-Health (ICT4AWE 2017), pages 127-134
ISBN: 978-989-758-251-6
Copyright © 2017 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved
127
et al., 2011). In this study we follow the definition of
wandering by Algase (2007):
‘A syndrome of dementia-related locomotion be-
haviour having a frequent, repetitive, temporally
disordered and/or spatially disoriented nature is
manifested in lapping, random and/or pacing pat-
terns, some of which are associated with eloping,
eloping attempts or getting lost unless accompa-
nied’ (p. 696).
Although walking in everyday language describes a
kind of movement, the phenomenon of wandering in
combination with the disease of dementia gets a
risk-occupied and pathological connotation. Often,
interventions are aimed at avoiding wandering, for
instance by closing the doors or by medicalization.
However, these approaches are considered as restric-
tive and counterproductive (Graham, 2015; Wigg,
2010; Robinson et al., 2007a; Furuta et al., 2004).
Therefore, a redefinition of the term wandering
appears to be necessary in order to discuss how the
living spaces of people with dementia could be de-
signed safer, and to provide them with self-
determination, autonomy, and quality of life (Kit-
wood, 2013).
2.2 Technical Devices and Family
Caregivers
For family caregivers, the care of people with de-
mentia is a time-consuming task, since with the
progress of the disease and the presence of the phe-
nomenon of wandering, immediate proximity and
permanent availability become necessary. In order to
meet these requirements, 70% of family caregivers
live in the same house together with the person with
dementia (Schneekloth and Wahl, 2005).
Often, family caregivers find themselves in situa-
tions where they have to balance the risks on one
side, and the right or the desire for autonomy on the
other side against each other (Bunn et al., 2012;
Robinson et al., 2007b). Various studies show that
daily challenges, the recurring conflicts, and time-
consuming care entail negative consequences for
family caregivers. Emotional distress (Robinson et
al., 2007b), sleep disorders (Schäufele et al., 2005),
reduction of their own social contacts (Moise et al.,
2004), and a deterioration in their quality of life
(Spring, Rowe and Kelly, 2009) are only few of the
burdens of family caregivers described in the litera-
ture.
The use of technical devices supporting people with
dementia to lead to an autonomous life in familiar
surroundings, to preserve cognitive skills, and to
maintain social contacts, becomes increasingly im-
portant for a need-oriented individual handling the
phenomenon (Wigg, 2010; Heeg et al., 2007). High-
tech systems that use electronics and micro-
electronics as well as Ambient Assisted Living pro-
vide various technical devices for this purpose (AAL
Germany, 2016; Heeg et al., 2007). From an ethical
and data protection perspective it is very demanding
for family caregivers to establish a balanced rela-
tionship between personal freedom on one side and
the necessity to control activities and behaviour to a
certain extent on the other side. Currently, only a
few studies from England, Ireland, the Netherlands
and the U.S.A. are available that take -with regard to
the application of technical devices- the users´ per-
spective of family caregivers, and consider ethical
issues. It remains unclear under which conditions, in
which situations, and with what ethical attitude
family caregivers would use the support of technical
devices in Germany.
2.3 An Overview of Technical Support
Systems
Technical devices developed on the basis of Global
Positioning System (GPS), Global Mobile System
(GSM), and Radio-Frequency Identification (RFID)
are mainly used to identify the location of people
with dementia, and to protect them from accidents
(Mahoney and Mahoney, 2010; Wigg, 2010;
Rasquin, 2007). In the study by Rialle et al. (2009)
especially younger and female interviewees consider
the tracking system as advantageous because safety
is increased for people with dementia, fear and wor-
ry of family caregivers are reduced, and family care-
givers can again take up their own social contacts in
the long run.
Apart from the GPS-systems the literature mentions,
numerous other technical devices are used to support
the care of people with dementia. These include
video surveillance, passive alarms (Mental Welfare
Commission, 2002), actometers (Dietz, 2012), night-
time monitoring systems (NMS) (Spring et al.,
2009), and the iWander system (Sposaro, 2010).
However, no valid studies could be found on these
technical systems.
ICT4AWE 2017 - 3rd International Conference on Information and Communication Technologies for Ageing Well and e-Health
128
2.4 Acceptance of Technology
The acceptance of technical devices is a result of
different influencing factors as described in the
Technic Acceptance Model (TAM) (Davis, 1991)
and its further developments TAM2 (Venkatesh and
Davis, 2000) and TAM3 (Venkatesh and Bala,
2008). The model has been developed to explain the
acceptance of individual users. The model was mod-
ified by Claßen (2012) with the result that it is now
also valid for older people (TAM3a). In this study
the TAM3a was used for two reasons. First, family
caregivers are often older persons, second, in ad-
vanced stages of dementia family caregivers make
decisions about the use of technology. In this model,
the predictors Perceived Usefulness and Perceived
Ease of Use directly influence the intention of a
person to use a technical device. Perceived Useful-
ness is defined as ‘the degree to which a person
believes that using a particular system would en-
hance his or her job performance’ (Davis,
1989:p.320) while Perceived Ease of Use is de-
scribed as ‘the degree to which a person believes
that using a particular system would be free of ef-
fort’ (Davis, 1989:p.320).
From a psychological perspective the formative
phase between the ages of ten and twenty five is
imprinting for the attitude to technology (Claßen,
2012). Each generation could collect different expe-
riences in their formative phase depending on which
role technology occupied in their time, to what ex-
tent technology was used, and which devices were
available to the population (Claßen, 2012; Sackmann
and Weymann, 1994).
3 AIMS OF THE STUDY
In order to take a closer look at the acceptance and
attitudes of family caregivers regarding the use of
technical devices in caring for people with dementia,
two research objectives were formulated:
1. Collecting data from family caregivers on their
attitude to wandering.
2. Investigating the acceptance of family caregiv-
ers concerning technical support systems in or-
der to ensure safe areas of movement.
4 METHODS
Qualitative research strategies were used to investi-
gate the subjective perspectives of family caregivers
caring for people with dementia. Throughout the
research process ethical principles have been strictly
adhered to. The interviewees were informed in detail
about the research aims, the procedure, their rights
during and after the interview, and the anonymiza-
tion of the data (Schnell and Heinritz, 2006; DGPs,
2004; BDSG, 1990). Each interviewee was asked to
give written informed consent to participate in the
study.
The research process is described in three phases as
follows.
4.1 Phase 1
To get an overview about the object of research a
systematic literature review was carried out in the
databases CINAHL, The Cochrane Library, DIMDI,
and the US National Library of Medicine. The re-
sults were evaluated after the subsequent completion
of a freehand search in national libraries. Considera-
tion was given to publications which
were carried out as meta-analysis, random-
ized controlled trials, outcome studies,
case-control studies, individual case stud-
ies, or qualitative studies,
provided sufficient information on study
design, the assessment instruments, and the
methods of evaluation,
were published during the search period
from 1990 to 2016.
Subsequently the selected sources were excerpted
and used as basis for the further research process.
4.2 Phase 2
Based on the findings from the literature and in
compliance with the TAM3a (Claßen, 2012), a semi-
structured interview guide was developed and struc-
tured according to the recommendations by Helffer-
ich (2011). The following inclusion criteria were set
for the problem-centered interviews according to
Witzel (2000):
The interviewee is or was the family care-
giver (relative, friend, acquaintance, neigh-
bour) of the person with dementia,
Technology as an Area of Conflict between Autonomy and Safety - Acceptance and Attitudes of Family Caregivers in Regard to Technical
Assistance to Ensure Safe Areas of Movement for People with Dementia Diseases
129
the interviewee will take over or took over
the responsibility for the care of the person
with dementia,
the patient was diagnosed with dementia
and showed the symptom of wandering.
4.3 Phase 3
After submitting an informed consent, n=14 prob-
lem-centered interviews with family caregivers were
carried out. As an example, illustrations of techno-
logical devices (e.g., GPS tracking system integrated
into a watch, a sensor mat) were shown to the family
caregivers during the interview to give them an
overview about existing technical opportunities. A
qualitative content analysis was carried out after
complete interview transcription following Mayring
(2008). The data material was repeatedly checked by
the authors. In order to consider the ethical perspec-
tive, further categories were formed in conformity
with the Model for Ethical Evaluation of Socio-
Technical Arrangements (MEESTAR) according to
Manzeschke et al. (2013). The developed categories
were continuously reflected and adjusted during the
data evaluation.
5 RESULTS AND DISCUSSION
Four male and ten female caregivers between the
ages of 21 and 85 were included in the study. Half of
the family caregivers (n=7) were older than 60.
N=13 family caregivers lived or live in the same
house with the person with dementia. At the time of
the interviews n=6 interviewees gave accounts from
the retrospective, because the care situation had
changed due to the fact that the person with demen-
tia had moved into a long-term care facility, or that
the person with dementia had died. According to
Robinson et al. (2009), these family caregivers
brought in experiences which they could reflect
critically due to the temporal distance.
5.1 Attitudes of Family Caregivers
Towards the Phenomenon of
Wandering
The phenomenon of wandering is omnipresent for
all of the family caregivers (n=14) in everyday life.
They are confronted with this behaviour both during
daytime and nighttime. All interviewees stressed that
they are not able to distinguish comprehensible
causes but they are convinced of the fact, that wan-
dering serves a purpose for the person with demen-
tia:
‘It does make sense for her, but not for us.’
(FC08:176)
‘He´ll do it for some reason. But it is a mystery to
me. So I take it as it is. ’ (FC06:22)
The family caregivers observed a kind of restless-
ness in people with dementia. They describe people
with dementia as ‘very driven and unsatisfied’
(FC10:136) and wandering is ‘like a fixed idea’
(FC05:60). According to the statements of family
caregivers, wandering directly influences the mood
of people with dementia. Four family caregivers
noticed a beneficial change in mood during wander-
ing. This change was either caused by walking alone
or by being accompanied by an intimate person:
‘Sometimes he is in a bad mood. Then he goes
for a walk.’ (FC06:112)
These results correspond with the findings of Robin-
son et al. (2007a). The people with dementia felt,
that walking was enjoyable, kept them fit, relieved
tension, and facilitated independence. Autonomy
and self-determination are for family caregivers in
the forefront of the early to middle stages of demen-
tia, when the symptoms often occur only for a short
time and in a moderate form. Only when they occur
more frequently and get more severe, safety for the
person with dementia gains priority (Sifton, 2011).
The interviewed family caregivers realized the im-
portance of wandering for the person with dementia,
and were trying to fulfill their needs in this respect.
In our study the majority of the family caregivers
(n=11) stated that the person with dementia no long-
er recognized well-known places, ways and persons
anymore. Additionally half of the family caregivers
had already experienced situations in which the
person with dementia was getting lost. Therefore the
risks of falls, losing their way, and accidents which
were subjectively felt by the interviewed family
caregivers increased:
‘She has also fallen several times. And now we
are confronted with the risk, that she doesn´t find
her home anymore.’ (FC13:30)
These experiences of family caregivers are affirmed
in the literature. Approximately 60 - 80% of people
with dementia fall at least once per year (Lord et al.,
2007; van Doorn et al., 2003). Eight family caregiv-
ers said that they were constantly looking for suita-
ICT4AWE 2017 - 3rd International Conference on Information and Communication Technologies for Ageing Well and e-Health
130
ble measures that would provide support for han-
dling the symptom of wandering in order to mini-
mize the risks and to improve their own wellbeing.
Due to these situations, they are in a caregiving
dilemma. On one side they are aware of the risks and
dangers, on the other side, they try to offer autono-
my for the person with dementia. However, they feel
insecure on how to balance both issues:
‘I´m still not finished with answering this ques-
tion. I´m asking myself again and yet again. Is it
better to do what we want or is it better to look
what´s good for her? That is difficult.’ (FC13:59)
5.2 Acceptance of Technical Support
Systems by Family Caregivers
The family caregivers see positive effects in the use
of technical devices in two respects, which are also
followed by the approach of Ambient Assisted Liv-
ing (AAL Germany, 2016). On one side they are
connecting safe-guarding of autonomy and self-
determination for the person with dementia with the
use of technical devices, on the other side they de-
rive possibilities of easing their own burden by using
technical devices:
‘I´m not the technology freak. But if it´s neces-
sary, I would deal with it. If it makes sense, then I
say yes.’ (FC10:223)
According to the findings of Rialle et al. (2009)
more than 50% of the family caregivers were in
favour of GPS-systems. As a result they expected
safety for the person with dementia to a higher de-
gree, and a reduction of their own anxiety and pre-
occupation.
With regard to financial aspects some of the family
caregivers raised concern in relation to the ac-
ceptance of the technical devices by the person with
dementia:
‘Where does he get the money from when he is
already on welfare?’ (FC11:109)
Furthermore, due to the lack of insight into their
illness and deterioration of their cognitive skills, the
person with dementia could reject the technical de-
vices or could cause errors due to incorrect handling.
This findings correlate with the results of Faucounau
et al. (2009) and Robinson et al. (2009).
Additionally, some family caregivers raised doubts
that the devices comply with the aesthetic ideas of
the person with dementia:
‘I personally wish for small devices without at-
tracting attention.’ (FC04:198)
These findings are concordant with the results of
other authors. The appearance of a technical device
which could indicate a handicap and therefore stig-
matize the person with dementia will be rejected
(Robinson et al., 2009; Mental Welfare Commission,
2002). Furthermore the interviewed family caregiv-
ers expressed concern about the dangers of suscepti-
bility to errors, malfunctions, breakdowns and expo-
sure to radiation, especially when using GPS-based
tracking systems:
‘It´s possible that devices can be a source of mal-
function or fire, which could be life-threatening.’
(FC11:109)
‘One says that they send radiation or things like
that.’ (FC02:167)
Additionally, the issue of unwanted and undetected
transfer of data to third parties was raised several
times in the interviews:
‘It provides the opportunity of manipulation or
changing the software. I think this is a risk’
(FC11:101)
As many of the interviewed family caregivers use
smartphones or navigation systems with GPS-
functions themselves, the risks connected with the
use of these systems were regarded as a matter of
rather minor importance:
‘Well, that is dealing with surveillance, with con-
trol […] but from that point of view, I couldn´t
use my smartphone anymore.’ (FC13:165)
However, it has to be considered, that both, the per-
son with dementia and the family caregiver received
comprehensive information concerning privacy and
performance of the technical devices. Based on this
information they were enabled to give informed
consent (Manzeschke et al., 2013).
6 CONCLUSION
Wandering is a frequent symptom of people with
dementia, that is associated with a high degree of
burden for family caregivers. Additionally, it is
entailed with different risks and dangers for the
person with dementia. Family caregivers want to
give people with dementia a realistic chance to expe-
rience safe, self-determined wandering.
Technology as an Area of Conflict between Autonomy and Safety - Acceptance and Attitudes of Family Caregivers in Regard to Technical
Assistance to Ensure Safe Areas of Movement for People with Dementia Diseases
131
The TAM3a according to Claßen (2012) was used to
determinate the acceptance of technical support
systems by the family caregivers in order to ensure
safe movement spaces.
In reference to Perceived Usefulness, technical de-
vices such as household appliances but also electron-
ic information and communication systems have
become indispensable in everyday life according to
the opinion of family caregivers. The comprehensi-
bility of the benefits, the anticipated results as well
as the simple handling are of great importance. Only
after gaining this knowledge the family caregivers
would consider a possible use. None of the family
caregivers generally rejected the use of technical
support systems. They would use such systems
themselves in the future, provided the mentioned
conditions are fulfilled, because they expect positive
results relating to the improvement of safety for the
person with dementia.
With regard to Perceived Ease of Use each inter-
viewed family caregiver was willing to deal with a
new technical device, and attempt to put it into oper-
ation. Most of the relatives considered it as a posi-
tive challenge apart from a certain fun factor. Should
they be faced with problems before and during the
use of the device they would get help from other
family members, specialists, and providers. They
would consider comprehensive explanations and
instructions when they purchase a device as very
helpful:
‘Yes, I would need support and instruction be-
cause I wouldn´t be able to learn it by myself.’
(FC08:288)
About 50% of the interviewed family caregivers
were 60 years old or older at the time of the study. It
can, therefore, be assumed that they gained experi-
ence with mechanical devices during their formative
phase rather than with electronic devices. They were
in full agreement with the use of electronic devices
such as a GPS based tracking system in the form of a
watch or a bracelet.
Caring for persons with dementia is associated with
a high burden for family caregivers. Poor health of
the family caregivers is one of the most important
predictors for nursing home placement (Joling et al.,
2012). Based on our findings, electronic devices
might be an opportunity to reduce the mentioned
burden of the family caregivers. To support the ac-
ceptance of these devices, they should be small
without attracting attention to avoid stigmatization,
and they should be affordable for family caregivers.
In the course of the survey, it became obvious that
ethical questions were of utmost importance for
family caregivers. Based on the seven ethical dimen-
sions according to Manzeschke et al. (2013) - care,
autonomy, safety, justice, privacy, participation, and
self-image - it could be ascertained that the question
of safety for people with dementia is the central
issue. It influences the further six ethical dimensions
and restricts them sometimes. This statement will be
illustrated by two examples.
Care vs. safety
Family caregivers see it as a caring act to let people
with dementia wander. In order to ensure safety, it is
necessary to restrict the areas of movement required
for wandering.
Privacy vs. safety
The family caregivers want to give people with
dementia a high degree of privacy. They accept a
reduction of privacy for example due to use of GPS-
systems provided that the safety is increased.
In the interviews, it turned out that the decision to
improve safety at the expense of other ethical di-
mensions was associated with strong doubts. Many
of the family caregivers were asking themselves if
they were entitled to make this decision without the
knowledge of the person with dementia and at which
point in time the person with dementia should have
been involved in this decision. The step which
should have relieved their burden to a certain extent
turned into an ethical distress. All interviewees felt
left alone with the ethical dilemma as advisory ser-
vices neither considered the use of technical devices
nor the solution of ethical conflicts. Therefore train-
ing possibilities and advisory services should be
expanded to explain the functions and applications
of technical devices and to support the process of
ethical decision-making (e.g., decision coaching).
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