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

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-

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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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