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Using Adaptive Immersive Environments to Stimulate Emotional Expression and Connection in Dementia Care: Insights from User Perspectives towards SENSE-GARDEN

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This paper presents early stage research on the development of an immersive, multisensory room for people living with dementia. Dementia is considered to be a public health priority on a global level. Our research addresses the challenge of meeting individual needs in dementia care, particularly in relation to social and emotional wellbeing. We draw upon findings from 52 interviews with users, including people with mild cognitive impairment, professional caregivers, and informal caregivers. These interviews were conducted to explore initial responses towards a multisensory room called SENSE-GARDEN. Findings indicate that users view the immersive environment as a space in which a person with dementia's sense of self can be supported and expressed with others. SENSE-GARDEN was considered to be a tool for creating emotional environments in which users can explore their life stories together with loved ones. Technology's role in fostering emotional spaces is discussed in terms of a transactional relationship between the person with dementia, the caregiver, and the immersive environment. This research provides rationale for the study of emotional engagement and interaction not only in the SENSE-GARDEN project, but also in the wider context of welfare technology as a whole.
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Using Adaptive Immersive Environments to Stimulate Emotional Expression and
Connection in Dementia Care
Insights from User Perspectives towards SENSE-GARDEN
Gemma Goodall1, Ileana Ciobanu2, Ronny Broekx3, Jon Sørgaard1, Iulian Anghelache4, Catalina
Anghelache-Tutulan4, Mara Diaconu4, Sigrid Mæland5, Therese Borve5, Audun Digranes Dagestad5, Piet
Bormans6, Marleen Custers6, Katrin Losleben7, Rita Valadas8, Alda Matias8, Andreea Marin2, Kristin Taraldsen1,
Walter Maetzler9, Mihai Berteanu2, J. Artur Serrano1,10
1Department of Neuromedicine and Movement Science, Faculty of Medicine and Health, Norwegian University of Science
and Technology
2University of Medicine and Pharmacy Carol Davila, Bucharest, ELIAS University Hospital, Romania
3Innovation Department, ePoint, Belgium
4 Research & Development Department, Compexin SA, Romania
5Odda Municipality
6Aan de Beverdijk, Vulpia Vlaanderen
7Kvinnforsk, University Hospital of North Norway
8Santa Casa da Misericórdia de Lisboa
9Department of Neurology, Christian-Albrechts-University, Kiel, Germany
10Norwegian Centre for eHealth Research, University Hospital of North Norway
Email: gemma.goodall@ntnu.no, ileanacuk@yahoo.co.uk, ronny.broekx@gmail.com, jon.sorgaard@ntnu.no,
a.iulian@compexin.ro, catalina.anghelache@compexin.ro, mara.manailescu@compexin.ro,
sigrid.meland@odda.kommune.no, therese.borve@odda.kommune.no, audun.digranes.dagestad@odda.kommune.no,
piet.bormans@beverdijk.be, marleen.custers@beverdijk.be, katrin@losleben.eu, rita.valadas@scml.pt, alda.matias@scml.pt,
andreea.budrica@gmail.com, kristin.taraldsen@ntnu.no,
w.maetzler@neurologie.uni-kiel.de, mberteanu@gmail.com, artur.serrano@ntnu.no
Abstract— This paper presents early stage research on the
development of an immersive, multisensory room for people
living with dementia. Dementia is considered to be a public
health priority on a global level. Our research addresses the
challenge of meeting individual needs in dementia care,
particularly in relation to social and emotional wellbeing. We
draw upon findings from 52 interviews with users, including
people with mild cognitive impairment, professional caregivers,
and informal caregivers. These interviews were conducted to
explore initial responses towards a multisensory room called
SENSE-GARDEN. Findings indicate that users view the
immersive environment as a space in which a person with
dementia’s sense of self can be supported and expressed with
others. SENSE-GARDEN was considered to be a tool for
creating emotional environments in which users can explore
their life stories together with loved ones. Technology’s role in
fostering emotional spaces is discussed in terms of a
transactional relationship between the person with dementia,
the caregiver, and the immersive environment. This research
provides rationale for the study of emotional engagement and
interaction not only in the SENSE-GARDEN project, but also
in the wider context of welfare technology as a whole.
Keywords-dementia; virtual environments; immersive
technology; emotions; interpersonal relationships
I. INTRODUCTION
Dementia is an umbrella term for a variety of
neurodegenerative diseases that most often affect memory,
behaviour, and communicative abilities [1]. There are
approximately 47 million people living with dementia
worldwide [2]. With this number set to increase to 131
million by 2050, it is of the utmost importance to tackle
dementia’s progressive impact on the wellbeing of people
living with a diagnosis.
The World Health Organization has called for action on
dementia, presenting it as a public health priority at a global
level [1]. This action includes a call for research to identify
ways of supporting the needs of people living with dementia,
their caregivers, and the needs of society in the context of
costs, understanding, and awareness.
In recent years, studies have identified numerous
complex needs of people with dementia living in long-term
care. These include management of challenging behaviours,
maintenance of social relationships, involvement of people
with cognitive deficits in meaningful activities, and
supporting the emotional needs of all [3][4].
Emotion-oriented approaches to care have been shown
to be cost-effective ways of improving psychological
wellbeing and social behaviour amongst people with
dementia [5][6]. These nonpharmacological approaches are
37Copyright (c) IARIA, 2018. ISBN: 978-1-61208-648-4
HUSO 2018 : The Fourth International Conference on Human and Social Analytics
often person-centred, focusing on the social and emotional
needs of the individual. Reminiscence rooms, virtual gardens
and virtual reality forests are examples of how immersive
technologies have been integrated in emotion-oriented
approaches designed to create effective interventions for
people with dementia [7][8].
However, this area of study has called for further
research in determining what works best for the individual
[9]. It has recently been suggested that an individualized
multisensory environment for people with dementia would be
a highly beneficial intervention, especially if family members
are included in the selection of stimuli [10]. Our research
builds on this suggestion, creating not only a personalized
multisensory intervention, but one which also incorporates
immersive technology, all with the inclusion of family
members, friends, and professional care staff.
This paper presents early stage research on a
multisensory room, SENSE-GARDEN, that is currently
being developed as an adaptive, immersive environment
integrating technology and multisensory stimulation for
reminiscence in people living with dementia. We will first
provide a brief overview of the project (Section II), followed
by the description of the methodology used in research and
development (Section III). We will then discuss the results of
the interviews in terms of self-identity (Section IV) and
shared emotional experiences (Section V). In Section VI,
these results are summarised and discussed in the theoretical
frame of a transactional relationship between users and the
immersive environment. Finally, in Section VII, we conclude
with final remarks, the next steps for SENSE-GARDEN, and
suggestions for future research.
II. SENSE-GARDEN: AN OVERVIEW
SENSE-GARDEN is a psychosocial intervention that is
being developed to create individualized reminiscence
sessions for people living with dementia in residential care.
The intervention combines the use of technology for
reminiscence and multisensory stimulation, with human-to-
human informational and emotional communication.
Prototypes of the SENSE-GARDEN room are currently
being built across Belgium, Norway, Portugal and Romania.
These rooms are filled with individualized stimuli such as
familiar music, imagery, films and scents in order to stimulate
memory and encourage active participation of the person
with dementia in reminiscing activities. Particular emphasis
is placed on using autobiographical content such as family
photographs, music from childhood, and films of life events.
The use of large projection screens, scent dispensers, and
surround sound systems will integrate the various multimedia
of the room, creating an immersive environment. For
example, high-definition imagery of a forest could be
accompanied with the smell of pine trees and the sound of
birds.
SENSE-GARDEN will expand on currently established
sensory rooms, which are also known as ‘Snoezelen’ rooms.
Deriving from the Dutch terms for ‘sniffing’ and ‘dozing’,
Snoezelen was originally developed in the Netherlands as a
therapy for individuals with learning difficulties [11].
SENSE-GARDEN presents an innovative approach to
sensory rooms by utilising smart technologies that enable the
space to adapt to individual preferences and needs of the
person with dementia. Radio frequency identification (RFID)
will be used to allow the SENSE-GARDEN system to
identify the user. Upon entering the room, the system will
automatically project autobiographical multimedia from the
person with dementia’s user profile.
The room is designed to be used by two main categories
of users. The first is the person with dementia (PwD), who is
also considered the primary user. The second is the caregiver,
who will either be informal (family/friend) or formal
(professional care staff). It is anticipated that together, the
PwD-caregiver dyad will interact with the immersive
environment to stimulate memory, conversation, sharing and
engagement.
III. METHODOLOGICAL APPROACH
SENSE-GARDEN is a multidisciplinary project
involving partners in Belgium, Norway, Portugal, and
Romania. The consortium brings together multiple
professions and competencies including technology
development, architecture, care home management, health
sciences and research.
There have been numerous calls to involve people with
dementia in the process of designing assistive technologies
[12][13]. Their contributions are thought to be of crucial
importance, along with input from their caregivers [14]. More
recently, user-centred design has been recommended for the
development and implementation of psychosocial
interventions [15].
The SENSE-GARDEN project embraces a user-centred
design and is working co-creatively with user groups
throughout all its phases. The aim of this preliminary research
was to explore initial responses from user groups, so that their
ideas and feedback may be integrated into the development
of SENSE-GARDEN.
Thus far, 52 qualitative semi-structured interviews have
been conducted with user groups across Belgium, Norway,
Portugal, and Romania. The aims of these interviews were to
collect responses and attitudes towards the SENSE-
GARDEN room concept, and to identify challenges that may
arise during the course of the project.
The specific research questions for this study were as
follows: (1) What are the users’ attitudes towards the concept
of SENSE-GARDEN? (2) What benefits, if any, do users
think SENSE-GARDEN could provide in the care of people
living with dementia? In order to answer these research
questions, the interview was designed in a way that allowed
for in-depth exploration of the users’ beliefs surrounding
SENSE-GARDEN. The interviews were semi-structured
with open-ended questions, and lasted for approximately 30
minutes. Interview questions focused on the overall concept
of SENSE-GARDEN, the individual components of the
38Copyright (c) IARIA, 2018. ISBN: 978-1-61208-648-4
HUSO 2018 : The Fourth International Conference on Human and Social Analytics
TABLE I. RESPONDENT INFORMATION
intervention, and potential benefits.
The respondents included 16 people living with a
diagnosis of mild cognitive impairment (MCI), 19 informal
caregivers, and 17 professional caregivers. In this study,
informal caregivers are defined as individuals who are the
spouse, relative, or close friend of a person living with
dementia or MCI. Professional caregivers are individuals
working within environments that administer care for people
living with dementia.
Table 1 gives an overview of the respondent information.
Despite the relatively small sample size, a diversity of age
groups are represented. There is a visible age difference
across the three user groups, with almost 20 years in between
each. The majority of the respondents were women,
especially within the two caregiving groups.
In order to conduct an in-depth exploration of the ideas
and perspectives given by the users, data was analysed using
thematic analysis. Thematic analysis is a qualitative method
in which prevalent patterns of ideas and responses are
identified amongst data. The analysis procedure for this study
undertook the following phases, given by Braun and Clarke
[16]:
1) Familiarisation with the data: All the data was
thoroughly read and re-read, along with notating initial ideas
and interpretations of the dataset
2) Coding: The ideas were used to generate codes,
which identify interesting features across the data. In this
study, data was manually coded in an inductive manner,
meaning that the codes and themes were developed directly
from the content of the data, rather than being developed by
pre-existing ideas.
3) Searching for themes: The codes were used to
search for themes, which represent patterned responses or
meanings across the data.
4) Reviewing themes: The themes were reviewed to
ensure that they accurately represent the views of the users
and the view from the entire dataset.
5) Defining and naming themes: The essence of each
theme was identified, along with its relevance to the research
questions.
6) Producing the report: Finally, the themes are
considered in their relationship to one another, and a narrative
about the dataset is created. This narrative is supported by
direct quotes from the dataset.
In order to stay true to the ‘voice’ of the users, codes and
themes were constantly checked back against the original
data. Braun and Clarke [16] emphasize the importance of the
flexibility in thematic analysis and identify the process as one
of continuous reflection on the reading, shaping, and
checking of data and themes.
Six themes were generated from analysis: (1) benefits for
all, (2) past and present, (3) focus on the individual, (4)
shared experiences, (5) emotional stimulation, and (6)
challenges to consider. Given its strong prevalence and
common occurrence across all themes, this short paper will
focus on user feedback regarding emotion. Results will be
discussed in terms of recovering self-identity and expressing
and sharing emotional experiences.
The full dataset from the interviews has been made
available online, along with the interview guide, and coding
from thematic analysis [17].
IV. RECOVERING SELF-IDENTITY
Dementia’s impact on memory, behaviour and
communicative abilities can have detrimental implications
for a person’s identity. However, there is evidence to suggest
that individuals may preserve a sense of self to some extent,
even in more severe stages of dementia [18][19]. In
discussing the benefits of SENSE-GARDEN, all respondents
believed that the individualized nature of the virtual
environment could trigger autobiographical memories. This
was linked by the respondents to helping people with
dementia connect with their past: “Just only three notes will
bring back that special moment”…, “Personal videos and
photos are important. You resonate with your past.”
Respondents considered interaction with the past as an
activity for strengthening self-identity in the present moment:
“Nowadays we forget who we are. SENSE-GARDEN will
help us all relive forgotten events and identities”…,
“Awareness of time passing by associating the child in the
past with today the adult.” This strengthening of selfhood was
Country
People with Mild Cognitive Impairment
Informal Caregivers
Formal Caregivers
N
Mean Age
Gender
N
Gender
N
Mean Age
Gender
Male
Female
Male
Female
Male
Female
Belgium
3
89.6
2
1
6
1
5
4
31.5
1
3
Norway
4
84
0
4
4
0
4
4
38.8
1
3
Portugal
3
79.7
0
3
3
0
3
3
44.3
0
3
Romania
6
67.2
3
3
6
0
6
6
42.7
2
4
Total
16
77.9
5
11
19
1
18
17
39.4
4
13
39Copyright (c) IARIA, 2018. ISBN: 978-1-61208-648-4
HUSO 2018 : The Fourth International Conference on Human and Social Analytics
also considered to ‘bring back’ the person with dementia, as
if a separate identity existed prior to the onset of the disease:
“Family and friends can be with the patient as they were
before”.
This symbiotic relationship between past and present has
been much discussed in regards to selfhood. Surr [18] adopts
a socio-biographical approach to explain how people with
dementia use their past in the context of telling their life story
to others, in order to maintain a sense of self in the present.
Along with allowing family members to be reconnected
with their loved one, there was an impression that
professional caregivers would also be able to view the person
with dementia in a modified perspective, after sharing life
story experiences: “Good for the staff to see the person with
dementia in another way”. Digital storytelling, an activity in
which technology is used to create innovative forms of
narrative, has been shown to educate nursing home staff [20].
The role of others should not be underestimated in
maintaining the identity of the person with dementia. In
discussing the needs of people with dementia, Kitwood [21]
stresses the importance of others in the maintenance of
personhood. Westius, Kallenberg, and Norburg [22] present
the notion of ‘intertwined narrative’, in which the life story
of the person with dementia is integrated with the narrative
of their family carer. Thus, if the person with dementia should
become unable to independently recall their story, the
intertwined narrative of the caring relationship may provide
opportunity for maintenance of self.
Earlier literature presents similar ideas. Mills [23] suggests
that people with dementia bestow their life stories to another,
therefore continuing their sense of identity. Mills states that
in this sense, the narrative of the individual never disappears,
regardless of the inevitable fading of the person’s memory.
SENSE-GARDEN could potentially offer a method for
assisting family and friends in preserving the life story of the
person with dementia. Additionally, SENSE-GARDEN
offers the opportunity for individuals to explore their life
story in a new and innovative way (through the use of
interactive touchscreens, immersive film and sound): “We
can explore old and new places”..., “My mother wants to see
her old street again but we can’t do it, with this she can visit
it again
V. EXPRESSING AND SHARING EMOTIONAL
EXPERIENCES
The users’ value for sharing experiences together
resonated across all of the interviews. Respondents saw
SENSE-GARDEN as a means to alleviating communicative
issues in the caring relationship: “It’s hard being a relative,
so little competence, dialogue is difficult. This is a great tool
for having a nice time together”…, “If I visit, there are always
dead moments. This will help get the life back into the
conversations”. SENSE-GARDEN’s perceived ability to
revive communication suggests technology may act as a
catalyst for emotional connection. This was echoed in other
responses regarding relationships: “It improves relationships
with others”…, “Sharing the experience is the most important
for reconnecting”.
SENSE-GARDEN was also considered as a potentially
helpful tool for stimulating nonverbal communication and
expression. There was a particular emphasis on the ability to
express oneself through the use of imagery and music: “Being
able to tell stories, if one has lost the language, pictures and
movies can tell things”…, “Some people stop talking, but
they can sing.”
Individuals living with the disease are capable of
experiencing and expressing a wide range of emotions, even
in later stages of dementia [5][24]. Incorporating creative
activity into the immersive environment has the potential to
elicit positive expressions of emotion and of self.
However, one respondent with mild cognitive impairment
brought an important consideration to light in stating that the
facilitation from the caregiver is vital for the success of the
intervention: “The therapist is very important and can instil
peace and wellbeing. A special emotional environment must
be created for SENSE-GARDEN to work.” This concept of
creating a ‘special emotional environment’ goes to suggest
that it is not the intervention alone that can benefit the caring
relationship, but also the individuals present who can shape
the experience of SENSE-GARDEN.
This idea is supported by respondents’ concepts of ‘space’
as something more than just a physical environment:
“SENSE-GARDEN is an intermediary space, between
memories and the here and now, a space we can all access
and we can remember how to feel, by one’s self and together,
without shame or fear.”
The above quote, given by an informal caregiver,
encapsulates the essence of what SENSE-GARDEN is
aiming to achieve. By adopting a holistic approach to the
environment, the individuals within it, and the relationships
that take place, the project aims to create an intervention that
can facilitate connection and wellbeing for all users.
VI. DISCUSSION
These findings highlight users’ values for emotional and
social benefits in SENSE-GARDEN. There was an overall
sense of the immersive environment being able to stimulate
autobiographical memory, which was valued as important for
preserving a sense of identity. The perspectives of
respondents are in agreement with previous research on
virtual environments for people with dementia. Siraraya and
Ang [25] describe the virtual world as a ‘memory sanctuary’,
in which selfhood and relationships are maintained.
The respondents were persistent in their beliefs that the
environment, the facilitation of the intervention, and the
stimuli all need to be tailored to the specific traits of the
person with dementia visiting the SENSE-GARDEN. It
should be acknowledged that the task of individualization is
not an easy feat. As human beings, we are all individualistic
by nature, with different tastes, preferences, and desires.
Adding the constantly fluctuating progression of dementia to
this individuality makes for a difficult task in designing
40Copyright (c) IARIA, 2018. ISBN: 978-1-61208-648-4
HUSO 2018 : The Fourth International Conference on Human and Social Analytics
technology for these users [26][27]. This is something that
the SENSE-GARDEN project will have to tackle through
rigorous work and collaboration with users, technology
developers, and researchers of various disciplines.
Respondents also emphasized the importance of
interaction between the SENSE-GARDEN stimuli, the
person with dementia, and the caregiver. The way in which
an environment simultaneously influences behaviour of
individuals and interpersonal relationships, and yet is shaped
by those persons, can be referred to as the transactional
relationship.
The notion of ‘transaction’ was firstly used in this context
by the philosopher John Dewey, who asserted “Everything
that exists in far as it is known and knowable is in interaction
with other things. It is associated, as well as solitary, single.”
[28]. In the context of SENSE-GARDEN, it could be said that
a transactional relationship exists between the various
technologies (the immersive environment), the person with
dementia, and the caregiver.
This transactional relationship is conceptualized visually
in Figure 1. The figure shows how numerous interactions
may take place between each user and SENSE-GARDEN to
form an overall relationship. The SENSE-GARDEN system
is influenced by the users, but, at the same time, the users’
emotions and interpersonal interaction with each other are
shaped by the immersive environment that SENSE-
GARDEN creates.
Later literature on emotion echoes Dewey’s view,
suggesting a need to study the complex relationship between
person and environment, for emotions cannot be
comprehended by one or the other alone [29]. These ideas can
be linked to current thought on the nature of technology
design, which has been described as ‘deeply contextual’ [27].
Therefore, incorporating the study of context, environment
and relationships seems appropriate for both dementia studies
and technology development.
Figure 1. Conceptual model of the transactional relationship that takes
place within the SENSE-GARDEN intervention
Understanding the interaction between environment and
the people within it is vital. How does SENSE-GARDEN,
and technology as a whole, fit into this interaction? What role
does it play? Going forward, research should adopt a holistic
approach to evaluating technology, considering the wider
context in which the technology is situated.
VII. CONCLUSION AND FUTURE WORK
The user interviews yielded valuable insights for the
progression of the SENSE-GARDEN project, with findings
demonstrating the importance that users hold for emotional
and social wellbeing. This paper has demonstrated the value
and usefulness of including user groups in the development
of not only immersive spaces, but also of interventions for
care.
Finally, the social and emotional aspects of virtual
environments should not be underestimated. The results
highlight the significance users find in fostering relationships
through means of self-identity and emotional relationships. A
focus on social and emotional interactions between
technology, users, and interpersonal relationships could
provide very fruitful results in the context of dementia care.
This research provides rationale for the study of emotional
engagement and interaction not only in the SENSE-
GARDEN project, but also in the wider context of welfare
technology studies.
ACKNOWLEDGMENT
This study was performed in the frame of the EU project
SENSE-GARDEN (AAL/Call2016/054-b/2017, with
implementation period June 2017 - May 2020) funded by
AAL Programme, co-funded by the European Commission
and National Funding Authorities of Norway, Belgium,
Romania, and Portugal.
We would like to thank all participants in the study.
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HUSO 2018 : The Fourth International Conference on Human and Social Analytics
... Therefore, the program might be helpful due to improvement in mood in patients with mild cognitive impairment and mild dementia. This finding is in line with a report stating psychosocial intervention through individualized reminiscence and multisensory stimulation evoked emotional and social benefits for those with dementia, along with a preserved sense of identity [29]. ...
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... Furthermore, individualized virtual experiences and environments may hold the most significant potential to promote the well-being of PLWD. User-centered design of a virtual reality environment has also been explored in a qualitative study (n = 52) involving people with MCI across 4 European countries [36]. Participants were asked for their views on an immersive screen-based multisensory room (SENSE-GARDEN) which provides individualized familiar stimuli (music, film, and scents) to promote reminiscence. ...
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