Masters Dissertation

LAUREN DI PIETRO MArch Architecture 2017 14033056 Student Selected Investigation [Walk the Walk]; An empathetic study simulating the symptoms of dementia in order to explore the problems they pose through cinema going.

Final word count: 9899

Ethical Approval

This study was approved by the University of Northumbria Newcastle.

Conflict of Interest

None.

Acknowledgements

This research wouldn’t have been possible without the contribution of Tyneside Cinema and all the staff there. Their willingness to participate has been invaluable to the study and is greatly appreciated.

With special thanks, also to Prof Ruth Dalton and Dr Lesley McIntyre, without whom this research couldn’t have transpired, and whose support has been second to none both academically and personally.

To all my family and friends who always inspire me and believe in me, even when I doubt myself, thank you.

Finally, to the woman without whom any of this work would have happened, you continue to motivate me every day and I am eternally indebted to you.

Preface

Preface

Dementia is a devastating neurological disease which displays a series of symptoms that pose problems for people living independently (Sauer et al., 2014). Nonetheless, due to a multitude of reasons, including, but not limited to, the impending crisis of availability (Macdonald and Cooper, 2006), the current state of dementia care (Mitchell, Burton and Raman, 2004), financial burdens (Lecovich, 2014; Lepp et al., 2003), and retaining independence (Lecovich, 2014; Innes, Page and Cutler, 2015; Swaffer, 2014), more and more people with dementia are choosing to live at home (Blackman,Van Schaik and Martyr, 2007).

It is evident through research that we are all affected by the environment, regardless of ability, and are controlled, enabled and disabled by it (Mehendiran and Dodd, 2009; Marquardt and Schmieg, 2009). We, as humans, have an innate awareness of our environment and seek qualities to satisfy safety, security, physical, psychological and comfort needs to improve our own quality of life (Stewart-Archer et al., 2015; Mehendiran and Dodd, 2009; Blackman et al., 2003).

People with dementia often lack the ability to manipulate their own environments in this way (Teri and Logsdon, 1991). It was therefore established that the overarching theme of this paper would seek to improve the quality of life of people with dementia through creating

00_Preface

environments which adhere to these needs regardless of the users’ ability.

There is a plethora of research about dementia architecture (Torrington, 2006; Marquardt and Schmieg, 2009; Nahemow and Lawton, 1973; Mitchell, Burton and Raman, 2004; Slone et al., 2014; Joy, 2008) and thus a literature review was conducted at the onset of this research in order to determine a gap within the existing field. It is evident through this that dementia friendly guidelines are currently implemented in residential and healthcare environments, however public space initiatives are often understudied (O’Malley et al., 2015; Mitchell, Burton and Raman, 2004; Capstick and Ludwin, 2015; Mitchell and Burton, 2006; Blackman et al., 2003; Mitchell and Burton, 2010; Davis et al., 2009; Marquardt, Bueter and Motzek, 2014; Day, Carreon and Stump, 2000; Higginbottom, Pillay and Boadu, 2013; Lecovich, 2014; Brorsson et al., 2011).

Public space is often a platform for activity (Carmona, 2003), and although activity for people with dementia is also widely researched (Teri and Logsdon, 1991; Torrington, 2006;Vernooij-Dassen 2007), specific types are often overlooked. The focus of this paper therefore concentrates on

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the gaps found; exploring cinema going and cinema design to make this accessible to people with dementia (Batt et al., 2014).

contents ABSTRACT

11

AUTHOR’S MOTIVATION

13

INTRODUCTION

17

SCOPING THE GAP Evaluating existing knowledge A gap in the knowledge

29 31 35

METHODOLOGY Research design Data analysis

39 41 58

ANALYSIS AND FINDINGS

61

DISCUSSION The built environment Emotional impact

69 72 78

IMPLICATIONS FOR DESIGN

85

CONCLUSION

89

LIMITATIONS AND FUTURE RESEARCH

93

REFERENCES AND BIBLIOGRAPHY Figues list

97 106

APPENDIX Themed literature table Participant information form Survey Interview questions

109 111 165 169 173

01_Abstract 10

11 Abstract

Background: Dementia is a neurological disease which ultimately causes atrophy of the brain. It is often repeated through literature that activity and architecture improve the quality of life for people with dementia.

Aim: The main aim of this research seeks to explore and abolish challenges faced by people with dementia when participating in activity in the public space. Cinema going was found to be an important activity to people with dementia, and was therefore explored through this paper.

Research question: What challenges do the symptoms of dementia present when going to the cinema?

Method: Symptoms of dementia were simulated in five participants. Participants then completed a series of tasks, which replicated the ‘typical’ cinema going scenario within the environment of Tyneside cinema, Newcastle. Ethnographic observations were recorded followed by semistructured interviews to draw conclusions.

Results: The research showed that there were many challenges of cinema going which were exacerbated by the symptoms of dementia. It was determined that there were two main types of findings from the results; one around the built environment which caused challenges, and the other illuminated the emotional impact that these challenges created.

cinema would be vastly improved.

01_Abstract

Conclusion: As a result of these findings, it can be determined that with improved environmental features, the experience of going to the

Author’s motivation

14 Authors motivation

I am thoroughly interested in the public realm of architecture, believing strongly that as architects we have the power to improve the quality of life for people. I believe that empathy is a powerful design tool in which we can design with our users at the core of all we do by understanding them and their needs.

The title of this paper holds meaning for empathic design. ‘Walk the Walk’ implies stepping into the shoes of those with dementia, and understanding their challenges.

I am half Italian on my Father’s side, and find that this plays a huge role throughout every aspect of my every day. Being brought up in such a family orientated and strong cultural background has enabled me to reflect this personality into my professional life. This meant that when my grandmother was diagnosed with Alzheimer’s Disease in 2010, it was important to me to help her in any way that I could. At this time I was just beginning my undergraduate studies in architecture and my focus therefore became exploring architectural solutions that could improve her quality of life, as well as others diagnosed with this disease.

I attained BA(Hons) in Architecture from Leeds School of Architecture in 2013 and undertook my Part 1 placement at Pearce Bottomley Architects in Leeds. Whilst here, I gained a wealth of knowledge working on a variety of projects, including the refurbishment of a GP surgery in 02_Author’s motivation

Skipton. The design involved implementing dementia friendly guidelines into offices and public spaces. The surgery won a national award for its ‘Outstanding Contribution to Dementia Friendly Communities’ from our refurbishment project, which was one of my proudest architectural achievements to date. This led to my ever-increasing passion for the subject and the want to create socially responsible architecture which formulated the back-drop of this paper. Eventually I aim to propose that inclusive design on both building scale and city scale would be the ultimate solution for designing for dementia, and continue research in this field.

15

Introduction

18 Introduction

One of the fundamental reasons that we design architecture is to create situation (Lynch, 1960). However, the diseases of dementia destroy the ability to understand situation and brings about the loss of one’s ability to place oneself in space and time (Koldrack et al., 2013).

The term dementia is used to describe over 100 different types of devastating neurological diseases (Prince et al., 2014) [figure 1].

Although different types of dementia can display their own unique symptoms, there are common indicators as identified in figure. 2 (Prince et al., 2014; Halloran, 2014; Bailey-Hunt, 2013; Utton, 2009; Chung et al., 2015).

Brain cells are damaged through dementia; taking with them the abilities, skills and memories which shape an individual’s identity (Camic, Baker and Tischler, 2015; Marquardt, 2011; Koldrack et al., 2013). Any function of the brain can be affected as any cell can be damaged (Sandilyan and Dening, 2015), and can therefore result in a wide variety of impairments (Marquardt, 2011; Blackman et al., 2003; Mitchell, Burton and Raman, 2004).

Agitated behaviour is often mistaken as a symptom (Halloran, 2014), however it is usually instigated because of the symptoms of dementia

03_Introduction

(Halloran, 2014).

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Figure 1. Diagram showing the most common types of dementia (Prince et al., 2014) and their prevalence in cases.

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Figure 2. Common Signs and Symptoms of Dementia (Price et al., 2014; Halloran, 2014; BaileyHunt, 2013; Utton, 2009; Chung et al., 2015).

03_Introduction 20

03_Introduction

Figure 3. There are cases of early onset dementia; however, it is found that there are about 1/688 people under the age of 65 diagnosed with dementia; 1/14 people aged between 65-80 years old; and 1/6 people over 80 years old are diagnosed with dementia (Prince et al., 2014).

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22 It is found that the risk of dementia increases with age (Mitchell, Burton and Raman, 2004; Qiu, Kivipelto and von Strauss, 2009; Blackman et al., 2007) [figure 3]. Currently 850,000 people are diagnosed with dementia in the UK, and this is set to rise to 1 million people by 2025 (Prince et al., 2014) as an ageing population continues to increase (Lecovich, 2014; Carmody, Traynor and Marchetti, 2014; Joy, 2008; Witzke, 2008) [figure 4]. Although the move into residential care is often unavoidable in later stages of dementia (Lecovich, 2014; Mitchell, Burton and Raman, 2004), it is estimated that 80% of people with dementia currently live independently at home (Blackman et al., 2007).

The symptoms of dementia can present problems for independent living (Duggan et al., 2008) however it is important to recognise that people with dementia still have a lot to contribute to society (Utton, 2009). It is therefore increasingly important to create environments where people with dementia can be active participants in everyday life rather than passive recipients of care (Davis et al., 2009).

Generally, people with dementia would prefer to remain living independently at home for as long as possible after diagnosis (Mitchell, Burton and Raman, 2004; Mitchell and Burton, 2010; van der Eerden and Jones, 2011; Stewart-Archer et al., 2015; Duggan et al., 2008; Lecovich, 2014; Phinney, Chaudhury and O’Connor, 2007). However, it is found that the environment in its current state poses barriers which restrict this autonomy through spatial disorientation and wayfinding for people with dementia (Blackman et al., 2003; Blackman, van Schaik and Martyr, 2007).

The physical environment also has an important role in gaining access to enjoyable activity (Sixsmith et al., 2007; van Haeften-van Dijk, van Weert and Droes, 2014; Wenborn et al., 2013; Torrington, 2006). The need to engage in enjoyable activity is intrinsic to all human beings [figure

03_Introduction

5] (Wenborn et al., 2013; Harmer and Orrell, 2008) and is often correlated with quality of life especially for people with dementia (Goldberg, Brintnell and Goldberg, 2002; Turner, 1993; Roberts et al., 2015; Phinney, Chaudhury and O’Connor, 2007; Edvardsson et al., 2013; Innes, Page and Cutler, 2015).

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Figure 4. Statistics of an ageing population (Mitchell, Burton and Raman, 2004; Qiu et al., 2009).

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24 Increased activity and social interaction is therefore enormously beneficial to people with dementia; improving mood, reducing disruptive behaviours, and providing feelings of success and accomplishment (Teri and Logsdon, 1991; Campo and Chaudhury, 2011; Phinney, Chaudhury and O’Connor, 2007).

However, the ability to utilize the environment is essential for performance in activity (Mitchell et al., 2003) and, as aforementioned, dementia impairs this ability to navigate the environment and thus impairs the ability to perform activities that are rewarding and enjoyable (Teri and Logsdon, 1991) [figure 6].

People with dementia define quality of life as maintaining independence, having basic human needs met, tranquillity, physical health, engagement in meaningful activities and social interaction (Stewart-Archer et al., 2015; Marshall and Hutchinson, 2001; Koldrack et al., 2013). Therefore, however difficult it may be to accommodate, the importance of maintained social activities in dementia should be recognised (Koldrack et al., 2013; Phinney, Chaudhury and O’Connor, 2007).

A range of activity is needed for people with enjoyment as the main aim (Pulsford, 1997; Harmer and Orrell, 2008) and to improve the quality of

03_Introduction

life for people with dementia (Edvardsson et al., 2013).

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Figure 5. Diagram showing the purpose of activity for people with dementia (Marshal and Hutchinson, 2001;Vernooij-Dassen, 2007; Torrington, 2009).

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Figure 6. How the symptoms of dementia cause challenges socially and architecturally.

03_Introduction 26

03_Introduction

27

Scoping the gap evaluating existing knowledge a gap in the knowledge

30 Scoping the gap

A literature review was conducted to evaluate existing knowledge in the field and naturally expose any gaps which this research will bridge.

Papers were selected for relevance to three key ideas; ‘dementia’; ‘architecture’; and ‘activity’. It was decided that all of the papers had to have an overarching theme of improving quality of life, as this is the ultimate aim of this research. 31 papers were initially discounted as they were not peer reviewed. A further 41 papers were also discounted for lack of relevance to the focus of this study. A total of 80 papers were coded into themes based on the key ideas as aforementioned (see Appendix 1), and cross referenced to structure the most relevant papers relating to one or more key ideas to form a base for the review.

Due to the contemporary nature of the topic, documents which were not written and published within the past decade (prior to 2006) were excluded from the analysis, leaving 59 to be coded. A further 14 were then discarded from this as they related to only one of the key themes.

Of the 45 documents analysed to recount more than one key idea, only 6 were found to mention all 3. These 6 were then explored in further

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detail to reveal the gap in the existing material.

31 Evaluating existing knowledge

The medical symptoms of dementia present rising social problems as well (Marshal and Hutchinson, 2001) threatening one’s ability to connect with others (Vernooij-Dassen, 2007).

Maintaining these connections for people with dementia, and particularly community connections, is increasingly explored through literature (Davis et al., 2009;Vernooij-Dassen, 2007; Goldberg, Brintnell and Goldberg, 2002). Community connections are deemed as essential for the creation of dementia friendly environments in both care homes, and independent living (Davis et al., 2009). Elements of dementia friendly environments have been researched and guidelines have been created [figure 7] but no clear definition has been established (Davis et al., 2009) and they are not yet mandatory or implemented in any aspect of the built environment (Blackman et al., 2003; The Kings Fund, 2015).

There is a growing awareness of the importance of the environment as an aid for people with dementia (Capstick and Ludwin, 2015; Day, Carreon and Stump, 2000; Caspi, 2014; Marquardt, 2011; Mitchell, Burton and Raman, 2004; Slone et al., 2014; Sandilyan and Dening, 2015) and there is evidence to show that architecture can improve their quality of life (Torrington, 2006).

The majority of current research on dementia architecture focuses on the internal environments of care homes, healthcare facilities and homes for the elderly (O’Malley et al., 2015; Mitchell, Burton and Raman, 2004; Capstick and Ludwin, 2015; Mitchell and Burton, 2006; Blackman et al.,

Boadu, 2013; Lecovich, 2014). However, as aforementioned, most people with dementia remain living at home, and thus their lives also include activities in public space, as well as in the home (Brorsson et al., 2011; Mitchell and Burton, 2010; Mitchell et al., 2003; Mitchell and Burton, 2006; Blackman et al., 2003; Torrington, 2009; Shanley, 2014).

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2003; Mitchell and Burton, 2010; Davis et al., 2009; Marquardt, Bueter and Motzek, 2014; Day, Carreon and Stump, 2000; Higginbottom, Pillay and

32 Public space is often deemed as a platform for activity (Carmona, 2003), however public space dementia friendly initiatives are currently understudied (Brorsson et al., 2011). Blackman (2007) and Sheenan (2006) consider the importance of the outdoor physical environment in garden design and public outdoor space, however this research lacks the exploration of internal public space. Although the outdoor public environment is important to include people with dementia through its design (Duggan et al., 2008) it is important to recognise that public space also includes the interior of public buildings (Carmona, 2003).

Existing literature recognises the need for activity in people with dementia (Teri and Logsdon, 1991) and many non-pharmacological interventions and activities have been widely researched to improve the quality of life for people with dementia (Politis et al., 2004); including aromatherapy, therapeutic touch massage, animal assisted therapy, light therapy, arts, music and therapeutic activities (Witzke, 2008; Beard, 2011; Skingley and Vella-Burrows, 2010). However, there is a lack of research on specific types of leisure activity with enjoyment and social integration as the main aim.

Leisure and self-care activities have been identified as most important to people with dementia (Harmer and Orrell, 2008). However, most literature focuses on everyday activities for people with dementia (Marquardt and Schmieg, 2009; Edvardsson et al., 2013; Davis et al., 2009; Wenborn et al., 2013; Goldberg, Brintnell and Goldberg, 2002). Although these are crucial to maintaining the independence of people with dementia, leisure activities are equally as important to improve the quality of life of people with dementia (Phinney, Chaudhury and O’Connor 2007; Chiu et al., 2013; Marshall and Hutchinson, 2001). Leisure activity has also been linked with reduced risks of cognitive decline (Chiu et al., 04_Scoping the gap

2013; Wang, Xu and Pei, 2012) as well as being identified as essential for happiness and important after diagnosis (McKernan, 2008).

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Figure 7. Image explaining the Kings Fund guidelines for designing for dementia, with the aims for the outcomes of what the guidelines will achieve (The Kings Fund, 2015).

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34 The highest rated leisure activity was found to be watching television in a study completed by Chiu et al. (2013). Qiu, Kivipelto and von Strauss (2009) also found links that watching television programmes presented a protective effect for the diseases of dementia. Although watching television was proven to be the highest rated leisure activity for people with dementia, it was found that social participation through activity was also rated highly (Torrington, 2009; Koldrack et al., 2013) and although watching television was enjoyed, it was missing this social aspect. This literature then led to the conclusion that cinema going was comparable to the activity of watching television, but included the social aspect as well.

The cinema is a public entertainment space (McKernan, 2008) which provides a place to promote social interactions (Batt et al., 2014) as well as just enjoying the act of watching. Going to the cinema is usually a cultural activity that people have easy access to but it can be a real challenge for people with dementia (Batt et al., 2014). Existing literature about dementia and cinema only discusses the cinematic portrayal of people with

04_Scoping the gap

dementia (Cohen-Shalev and Marcus, 2013) rather than the activity of cinema going.

35 A Gap in the knowledge

The 6 papers found to mention all 3 key themes, as evaluated previously, were assessed in further detail to examine their relevance to dementia friendly cinema design.

Accessibility in public space as perceived by people with Alzheimer’s disease (Brorsson et al., 2011)

Barriers to leisure participation for people with dementia and their carers:An exploratory analysis of carer and people with dementias experiences (Innes, Page and Cutler, 2015)

Developing a technology ‘wish-list’ to enhance the quality of life of people with dementia (Sixsmith et al., 2007)

Providing activity for people with dementia in care homes a cluster randomised controlled trial (Wenborn et al., 2013)

The design of technology and environments to support enjoyable activity for people with dementia

The impact of early dementia on outdoor life A ‘shrinking world’ (Duggan et al., 2008)

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(Torrington, 2009)

36 Brorsson et al. (2011) begins to acknowledge that public space could include indoor environments, such as museums and libraries however doesn’t highlight cinema going. Despite mentioning this, the paper mainly focuses on outdoor environments for people with dementia and lacks further exploration of the key to internal design. Wenborn et al. (2013), however, does talk about the importance of the internal physical environment to facilitate activity for people with dementia, but the focus is mainly on internal environments of care homes and, again, as Duggan et al. (2008), this paper also focuses on everyday activities rather than leisure activities for the enjoyment of people with dementia.

Brorsson et al. (2011) goes on to claim that activity is a central force in the lives of people with dementia and therefore being able to perform activities outside of the home is essential to well-being. This paper argues that currently public space is often seen as inaccessible to people with dementia, but fails to make the connection between public space as a platform for activity and thus the importance of its accessibility.

Innes, Page and Cutler (2015) reiterate this point and identifies leisure activity as a strategy to the social disability of dementia, however also states that leisure activities are not inclusive to people with dementia, and again fails to make the connection between the influence of an accessible built environment on the participation of activity.

As a person’s capacity decreases, they demand more from the environment and more must be done to enable the public space to be accessible to all, including people with dementia (Brorsson et al., 2011; Innes, Page and Cutler, 2015), however current research doesn’t explore the spaces

04_Scoping the gap

which would need to be developed, or how to develop them.

37 Torrington (2009) repeats the argument that the built environment should support activity through providing opportunities for social participation, however, as other research similarly failed to do, this paper also doesn’t express how architecture can help to facilitate activity.

Torrington (2009) also draws parallels between the importance of social and community participation in activity that people with dementia want to undertake, however again doesn’t specifically look at specific activities which would promote these community connections and social participation. Duggan et al. (2008) does consider specific types of activity and the importance of these to retain independence, however this paper specifically focuses on every day activities within the outdoor public space, rather than leisure activity or cinema going and again, fails to connect architecture with this. Although exploring how to promote activity participation, unsuitably, Sixsmith et al. (2007) and Torrington’s (2009) focus lies within technological interventions to promote activity, rather than the architecture itself.

It is evident through these papers that existing research into leisure activity for people with dementia falls into psychological impacts rather than the environment in which the activity is undertaken, and only mentions that the environment can have a positive influence rather than exploring how it may do this. None of the papers look at interventions that could improve and facilitate the activities which they highlight to have a positive effect on the quality of life for people with dementia, or look at the current issues or reasons regarding the inaccessibility of the built environment.

From the literature reviewed, it is clear that works have been undertaken to explore the relationship between architecture and activity

particular cinemas which are vastly understudied as an important leisure activity, and the architectural interventions that could be implemented to ease the symptoms of dementia.

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to improve the lives of people with dementia. However, there is still a gap in the research which needs to explore internal public space, in

Methodology research design

data analysis

40 Methodology

An exploratory simulation study was designed to uncover the social and physical barriers faced by the symptoms of dementia when attending a cinema. Interventions could then be suggested from the results.

To ensure the research is credible, valid, reliable and generalizable, an empirical study was conducted using an integrated research design (Leung, 2015). An integrated research design, ensures that potential weaknesses present in methodology are neutralised, whilst its strengths are complimented, therefore providing the greatest chance of successful results (Leung, 2015).

The research methods used within this paper will be:

1. Questionnaire 2.

Simulation Study

3.

Semi-structured Interviews

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Each method was evaluated to identify the strengths and weaknesses before the research commenced.

41 Research design

The research was designed to ensure maximum participant safety whilst obtaining the most reliable and valid results in the aim to answer the research question [figure 8]. A series of dichotomous questions were designed to obtain participant information to understand any influences which might affect the study (Appendix 2) and to understand the value of the study in relation to the findings from the literature reviewed (McKernan, 2008; Watts, 2004; Batt et al., 2014).

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Figure 8. Data collection took part in three phases.

Data was then analysed using affinity mapping techniques to decode recurring themes.

42 Phase one – Survey Questionnaire

The questionnaire was devised with a rating scale to determine current attitudes towards dementia and cinema going (Appendix 3). This offered a greater uniformity of response to code the data (Pickard, 2013, p.211). The ratings were based on the Likert Scale (Likert, 1932, pp.5-55) which allows a respondent to select a choice that demonstrates their level of agreement with a statement.

Questionnaires allowed for quantitative data to be collected which further validated the interviews and observations made. A mixed method approach is often favoured (Bryman, 1988) as it allows for triangulation of quantitative and qualitative data for evaluation (Marshal and Hutchinson, 2001).

The same survey questionnaire was completed immediately after the simulation study to understand changing attitudes before and after the simulation.

A series of measures were undertaken throughout the research to limit the weaknesses. Questionnaires were completed immediately before and after the simulation to omit any forgetfulness of participants. Although it could be argued that the biggest weakness is the bias of the

05_Methodology

suggestive questions, the rating scale aimed to mitigate this level of researcher imposition (Pickard, 2013, p.212).

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Figure 9. The strengths and weaknesses of questionnaires.

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44 Phase two - Empathetic simulation and Observation

There are many ethical issues surrounding the topic of dementia (Carmel-Gilfilen and Portillo, 2015) and because of these it was not feasible to work directly with people with dementia. Although it is argued that people with dementia should make decisions about their own care (Sixsmith et al., 2007), it is also contended that we are unable to ascertain the real suffering of people with dementia because the disease impairs cognitive functioning (Bond, 1992).

This means that empathy is deemed a good design method to understand the users of the environment (Koppen and Meinel, 2012) and simulation research allows designers to step into the user’s experience by simulating their conditions (Kouprie and Visser, 2009). Empathetic design is rarely used in architecture and is often studied in product design instead (Carmel-Gilfilen and Portillo, 2015); leaving a gap in the knowledge to investigate.

Physical simulations were created to emulate some of the common symptoms of dementia [figure 10] and a series of tasks were set to navigate around a cinema environment whilst under these conditions. Tasks were explained once participants were under the simulation, to prevent any preconceptions or premeditated participation in the study.

This type of simulation research ensured the wellbeing of participants (Lateef, 2010) by not directly working with people with dementia. It also

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mitigates ethical tensions and resolves practical dilemmas (Lateef, 2010) needed to explore the research question.

There were limitations found with the equipment, such as goggles would have been difficult to manage for participants with glasses. These would need to be adapted for future studies. Alternative goggles could be used, such as those in figure 12.

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Figure 13. The strengths and weaknesses of simulation methods.

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Figure 10. Table showing the materials used and the symptoms which they emulated.

05_Methodology 46

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Figure 12. Goggles that could be used in future studies if stained yellow with the same black dots in the centre of the vision, that would allow participants to still wear glasses underneath.

Figure 11. Illustration demonstrating how to wear the equipment for the study.

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48 The same equipment was used for all participants, except disposable vinyl gloves, for hygiene reasons. The volume of the audio was also set at the same level for all participants to remove bias (Bell, 2010).

Objectivity is sought through this methodology (a distance between the researcher and the participant) to ensure the reliability of the results (Robson, 2002, p.19). Nevertheless, there is always a concern through simulation approaches that participants would have an increased awareness of the research as a study, rather than becoming immersed in the situation which could affect the results. This is referred to as the Hawthorne effect through research and is a change in the behaviour of participants that is not directly attributable to the simulation methods but simply to the awareness of being in a research study (Sedgwick and Greenwood, 2015). This aspect of the study was considered throughout data collection and analysis to mitigate this as far as possible.

Ethnographic observations were recorded during the study, which was followed with a semi-structured interview with each participant and the field notes from the observations were discussed for clarity. Frequency and types of behaviours and challenges were recorded during

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observation.

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Figure 14. The strengths and weaknesses of observation.

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50 Phase 3 - Semi-Structured Interviews

Semi-structured interviewing is a research technique in which questions are designed to be open and allow rich, detailed data to be produced and to build up an interchange between the interviewer and the participant (Drever, 1995). Ten open ended questions (Appendix 4) were asked before a general discussion about the observations recorded was completed for clarity.

Interviews were conducted immediately after the participant had completed the study, to reduce errors in recalling information of data if collection was after the event (Drever, 1995).

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Interviews were audio recorded and transcribed verbatim.

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Figure 15. The strengths and weaknesses of semi-structured interviews.

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52 Intervention

The Case Study

Tyneside cinema was chosen as a case study as it is currently underway with its own project to become dementia friendly. As a result of the literature reviewed it was a good case study as a public cinema building (McKernan, 2008; Batt et al., 2014). The researcher has far from perfect control when carrying out research in someone else’s territory, such as the public venue of Tyneside cinema (Robson, 2002, p.1). However, this could also be considered as beneficial to the study as it creates an element of realism through the research, which is useful when undertaking real world research to understand the users of public space.

Tasks were designed to mimic the typical process of going to the cinema, looking specifically at the symptoms explored through literature and Figure 21. Photograph of third floor gallery. of

of

Figure 23. Photograph Classic theatre room.

Figure 24. Photograph Electra theatre room.

Figure 22. Photograph Classic theatre room.

of

Figure 18. Photograph Electra theatre room.

Figure 20. Photograph of buying popcorn.

of

Figure 17. Photograph of third floor to locate popcorn.

Figure 19. Photograph of bar to buy popcorn.

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how these might affect the activity [figure 25].

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Figure 16.Tyneside cinema is located in Newcastle city centre, which makes it easily accessible as a case study to both the participants and the researcher.

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Figure 25. Tasks were told to participants after the simulation had begun and in the same order to ensure reliable results. A script was drafted to ensure that all participants had the same information to properly undertake the research.

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Figure 26. Tasks involved navigating around the cinema, both horizontally and vertically.

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56 Sample Selection

Five participants were selected at random to undertake the study [figure 27]. Participants were recruited by word of mouth and invited electronically to partake in the study. A written letter was sent to all participants who initially agreed to partake in order to explain what would be required of them for the purposes of the study.

Informed consent was obtained from all participants prior to beginning data collection. Participants were given the opportunity to terminate the study at any point, or withdraw from the research at any time.

Participants were aged between 21-24 and were matched as closely as possible through experiences with dementia, as to eliminate bias. All

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participants selected had no previous knowledge or training about dementia.

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Figure 27. The selected participants. * All information obtained was confidential and for the purposes of the data analysis names have been changed.

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58 Data Analysis

Thematic Analysis is a form of qualitative data analysis in which central and quite often crucial themes within the text are uncovered (Gibbs, 2010), therefore quantifying previously unmeasurable data.

Themes were decoded from the observational and interview information collected through a process of affinity mapping. Affinity mapping involves creating a diagram from hand written post it notes, and then categorised into common themes. One observation is written per note

Figure 28. The strengths and weaknesses of affinity mapping.

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and then natural relationships are created to link these into groupings (Britz, 2000).

59 Process Analysis

A pilot study was undertaken before beginning the main research study in order to test out the equipment and methods of recording. The results of which have been tabulated as a risk assessment style

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Figure 29. Table showing the results of the pilot study.

exercise to test certain areas of the study [figure 29].

Analysis and findings

62 Analysis and findings

The study was very useful to understanding the challenges of cinema going for people with dementia. Parallels between this study and the existing knowledge in the field have been drawn to validate this research.

The literature expressed that cinema going was an important cultural activity in which people with dementia often find challenging (Batt et al., 2014). It was agreed by 80% (n=4) of participants that cinema going provides chances for social interaction and a sense of independence which are paramount to improving the quality of life of people with dementia as found through literature (Edvardsson et al., 2013; Campo and Chaudhury, 2011; Lecovich, 2014; Phinney, Chaudhury and O’Connor, 2007).

06_Analysis and findings

“Cinema going... gives people a sense of identity within their own community... something to bond over with others�.

-Betty

63 This research also confirms that the symptoms of dementia cause noticeable challenges throughout the cinema going experience (Batt et al., 2014). In their broadest sense, challenges were recorded where participants displayed behaviours that were not representative of the typical cinema going experience, and were apparent to be the direct response of the simulated symptoms of dementia. This included aspects of disorientation through navigation, and any displays of agitated or emotional behaviour, which are restated through literature as familiar to people with dementia (Halloran, 2014).

The comparative survey questionnaire, which was completed before and after the simulation study, showed remarkable differences in the perception of people with dementia after completing the simulation [see figure 30].

The coloured dot indicates the responses given before the simulation, and the black dot denotes the responses given after the study.

Preconceptions of dementia meant that participants weren’t fully aware of the implications that the symptoms of dementia could pose on cinema going. All participants (n=5) described the study as insightful as they felt that they had learned a lot about the condition and the inaccessibility of people with dementia when attending the cinema.

Drew was the only participant who felt that his knowledge of dementia had not changed after undertaking the study. This could be because he was not as fully immersed in the study as other participants and displayed typical behaviours which correlated with the Hawthorne Effect

with the researcher more so than the other participants. In general, the most dramatic changes from the survey results were shown in female participants.

06_Analysis and findings

(Sedgwick and Greenwood, 2015). This was evident at points in all participants, but mostly so in participants Drew and Mary, as they interacted

Figure 30. The graph above shows the comparative responses in the answers given in the survey questionnaire before and after the simulation study.

06_Analysis and findings 64

65 This apparent male-female split was the most surprising factor that arose from the results.

It was found that male participants seemed to maintain composure throughout the study, whereas female participants seemed a lot more anxious and vulnerable resulting in irrational and agitated behaviour. This was evident as Dotty often swore and Betty was close to tears at points of the study.

“That was hideous”. – Dotty

“I could feel myself getting very anxious”. - Betty

Mary was the only female participant that asked for directions to find popcorn, but then when directions were given to her she didn’t follow them and instead gave up on the task. She described the experience as “awful”.

Both male participants asked for directions and managed to complete all of the tasks as a result. Even though Mary asked for directions, she again deemed the task too complex and thus gave up on it ignoring the directions given to her. None of the female participants competed the task to buy popcorn. This was fascinating as they all expressed that they found the study too difficult to undertake and that the task of buying

study though, was that all female participants expressed that they would have got popcorn if not under these conditions. Although it can be agreed that buying popcorn didn’t necessarily affect watching a film directly, it was deemed as a typical part of the process and is something that one associates with going to the cinema (Batt et al., 2014).

06_Analysis and findings

popcorn added complexity which they felt wasn’t an essential part of the process. What was particularly interesting about this aspect of the

66 Another interesting aspect to the study showed that all male participants (n=2) took the stairs whereas all female participants (n=3) took the lift. This was true as well from the pilot study as Larry took the stairs. Although this aspect of the study seemed happenstance at the time of observation, it was later expressed by Drew that;

“If I took the stairs, I am in control. If I took the lift, then I am trapped if I make a mistake.�

This was true of Betty, who took the lift and ended up on the wrong floor. She then got very distressed and found this to be one of the hardest parts of the study. It was interesting to find that all of the female participants trusted the lift more than they trusted themselves when navigating on the stairs, even though they had less control of the lift. When this was discussed with participants, the females stated that they didn’t even really consider the stairs, whereas the male participants made a conscious decision to take the stairs in each case.

The gender differences have been an interesting aspect to this study. Gender differences in empathy are widely studied (Rueckert and Naybar, 2008; Mohr, Rohe and Blanke, 2010), and it is often found that females tend to excel in empathy and interpersonal relationships (Rueckert and Naybar, 2008) more so than males. This is true of this particular study too where female participants have felt more immersed in the study on a whole than the male participants. Mohr, Rohe and Blanke (2010) also reiterate that it is this heightened sense of empathy in female participants

06_Analysis and findings

that enables them to place themselves in the shoes of others more easily, which begins to clarify the results from this simulation research.

67 Christov-Moore et al. (2014) explains that males are usually more cognitive than women, and would therefore think ahead of possible problems with being trapped in the lift, rather than taking the stairs, for example. It is also argued by Byrne and Worthy (2015) that females often make decisions based on the highest immediate reward, whereas males look at a longer-term investment. This may begin to explain why female participants chose to take the lift, which to them would have seemed the most immediate gain. It is a faster means of transport and takes the strain off their feet. Men would deem taking the stairs as having the best long term reward strategy as even though it may take them longer and be slightly more tiring or painful, they know that they are in full on control of where they travel to, and are therefore certain that they can end up in the desired location. This can also be justified by males’ willingness to undertake risks, as opposed to females’ (Christov-Moore et al., 2014). The stairs were deemed as a risk of falling and therefore female participants mitigated this risk and took the lift while the male

06_Analysis and findings

participants took the stairs.

Discussion the built environment emotional impact

70 Discussion

All observations and interviews were categorised using affinity mapping techniques [figure 31] to decipher recurrent themes displayed by each participant for discussion.

There were two main categories interpreted from the results; one around the built environment that caused challenges for the symptoms of dementia; and the other illuminated the emotional impact that these challenges presented. Subcategories were then found within these, such as Figure 32. The themes were based on a hierarchy of two main categories, and then further distributed into subcategories.

07_Discussion

navigation and agitated behaviour, which then formulated discussion topics.

07_Discussion

Figure 31. Affinity mapping was used to decode themes as shown in the photograph.

71

72 The built environment

Navigation

Navigation was the first theme coded from the data as all participants found difficulties with navigating. Challenges with navigation often led to participants getting lost, and displaying signs of confusion and disorientation. Getting lost was recorded on 8 different occasions throughout the study, with at least 2 of those occasions involving a return journey. This was reiterated through displays of unsteady gait, which was recorded on 18 occasions throughout the study.

It was an interesting aspect of the study that 80% (n=4) of participants had never been to Tyneside cinema before and these participants felt that the building was not accommodating to them as a person with dementia. Barry, who had been to Tyneside cinema before, stated however, that his previous experience in the cinema hadn’t helped him at all when undertaking this study.

It was found by most participants (n=3) that the most challenging aspect of the whole study was navigating.

Drew was the only participant who didn’t explicitly express difficulties with navigating during the interview discussions, however, he had approached the researcher during the simulation study and expressed that he “had no idea where he was going.” He had also approached a member of the public to direct him to the screen that was right behind him, stating again that he “didn’t know where to go”.

07_Discussion

“getting from one place to another; that seriously stressed me out...

Navigating around was… very difficult”.

-Betty

07_Discussion

Figure 33. The themes from the affinity mapping are shown in the diagram.

73

74 Navigation problems seemed to arise mostly from the vertical layout of the cinema. The main concern for participants was the change in levels, as toilets for males were on the second floor and toilets for females were on the first floor.

This was also evident through the pilot study, as Larry displayed large amounts of agitated behaviour and frustration when he had found the female toilets, but not the male as they were on a different level, despite having checked the signage first to lead him there.

It is evident through literature and this study that dementia poses marked declines in navigation skills (O’Malley, Innes and Wiener, 2015; Sheehan, 2006; Caspi, 2014; Slone et al., 2014; Koldrack et al., 2013). It is also deemed that the ability to access and navigate the environment is essential for the performance in activities (Mitchell et al., 2003), and therefore the results found from this study are unsurprising. As all participants (n=5) found difficulties with navigation, then it is fair to determine that these results verify difficulties in cinema going, as the ability to navigate the physical environment is decreased through the symptoms of dementia.

“It’s very difficult to navigate”.

07_Discussion

-Mary

75 Signage

Another recurrent theme was that the signage too small and difficult to read.

It is deemed that the problems found with the signage, as aforementioned, contributed to some of the problems faced when navigating around the cinema. It is evident that signs are not the most useful means of seeking information for people with dementia (Mitchell et al., 2007; Sheehan et al., 2006) as they can cause confusion, which was found during the study. It is often advised through dementia friendly guidelines to keep signage to a minimum and rely on alternative environmental cues as these will be more beneficial to people with dementia (Mitchell and Burton, 2006). However, if signage is required, Mitchell and Burton (2006) goes on to explain that signs should remain simple, with large, dark lettering on a light background with realistic symbols. Although the signage within Tyneside cinema was described as small by Barry, it was clear and simple with dark lettering on a light background and contained appropriate imagery as visual cues.

“Just trying to read the signs is quite hard�.

07_Discussion

-Mary

76 Contradictory to Marshall and Burton (2006), another study by Marquardt et al. (2014) stated that the ability of people with dementia to perform activities was improved by simple and clear signage. Although this seems to contradict former literature, it was highlighted by almost all participants that ‘better signage’ would have improved the experience for them enormously. This means that if the signage at Tyneside cinema were to be made larger it may increase the accessibility of people with dementia and decrease navigation issues.

Dotty also attempted to enter the store room thinking that it was the cinema screen. This was due to a lack of signage on the door stating that

07_Discussion

it was a store room. This caused confusion for Dotty which led to a lot of her aforementioned agitated behaviour.

77 Lighting and Colour

It was often expressed that dark spaces were avoided, and floor lighting was something that was expressed as a possible improvement of the experience by 60% (n=3) of participants.

Dotty hesitated before entering the cinema when the doors were opened for her, “because it was

dark”. The difference between natural lighting on the third floor and the artificial lighting throughout the rest of the cinema was also something that was also raised as a concern, as “it made everything appear white”.

This begins to relate to the use of colour which was also mentioned on multiple occasions by participants (n=2) to cause problems with navigation and wayfinding.

Colour is a powerful communication tool, triggering emotions and memory (Day, Carreon and Stump, 2000). This was again a recurrent theme through the literature reviewed (Marquardt et al., 2014; Day, Carreon and Stump, 2000). It is found that different shapes, features, colours and contrasts can all be useful tools for successful navigation of people with dementia (Mitchell and Burton, 2006), but used incorrectly can disable people with dementia, as shown through the study.

Visual contrasting of colours is proven to reduce agitated behaviour (Marquardt et al., 2014). However, people with visual impairments cannot always distinguish subtle colour changes (Hall and Imrie, 1999; Marquardt et al., 2014), which was evident through this study when participants

“You don’t appreciate how much you rely on your senses”.

-Drew

07_Discussion

were using the lift as the frame and the doors were the same colour, which made it difficult to distinguish.

78 Emotional Impact

Agitated Behaviour

Although 100% (n=5) of participants completed the study, 60% (n=3) stated that they wanted to terminate it on at least one occasion and all participants described the study as ‘difficult’.

Displays of agitated behaviour were recorded in all participants (n=5), often as a result of the challenges encountered when carrying out tasks.

Frequencies of these behaviours were recorded during the observations to determine persistent notions.

Agitated behaviour is defined by behavioural attributes including, but not limited to, pacing, verbal or physical aggression, repetitious mannerisms, screaming, and general restlessness (Halloran, 2014).

This was the most frequent recorded item through all of the observations, and is often a behaviour which is talked about in literature as well as being exacerbated by the symptoms of dementia (Halloran, 2014).

Dotty expressed feelings of great distress, often swearing and expressing on one occasion that she wanted to give up.

07_Discussion

She stated that, “the feeling of… panic” was the most surprising aspect of the study for her.

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07_Discussion

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Figure 34. Graph to show frequencies of recorded behaviours.

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79

80 Betty also expressed that she felt very vulnerable throughout the study, which was the cause of a lot of her agitated behaviour. Although Drew expressed that he didn’t find any moments in which he wanted to terminate the study, he was also displaying signs of agitated behaviour throughout. He was found to be pacing and shuffling whilst waiting for the doors to open, and often tapping his feet and asking questions to ensure that he was doing the right thing.

Dotty and Mary also both felt that they had been tricked through the study when they found the screen doors locked. These accusations are also found to be typical of people with dementia when they feel agitated (Halloran, 2014).

80% (n=4) of participants displayed agitated behaviour when waiting for the screen doors to open.

Mary was the only participant who did not find any issues with waiting for the doors to open, however on the date of her study, there was a guided tour of the cinema organised, and Mary ended up joining the guided tour before following the crowd into the cinema. All of the other participants had to wait on their own for the doors to open as the door was locked before the showing. The tour therefore influenced the way in which Mary acted, and the results would have expected to have been the same as all other participants if she had to wait as they did.

Dotty stated that the hardest part of the entire study emotionally was the waiting aspect. Waiting was deemed as the greatest cause of

07_Discussion

distressed emotional behaviour and self-doubt, two key themes that were recurrent through displays of agitated behaviour for most participants.

“I just felt in my own little world. I felt really emotional. I thought I was going mad”.

-Dotty

81 It was found throughout the whole study that most participants (n=4) doubted their thoughts and actions whilst under the simulation, whereas they expressed afterwards during interview that they wouldn’t have if they weren’t under these conditions.

Doubt was also displayed by interactions with the researcher. Although this could be attributed to confirmation of the Hawthorne Effect (Sedgwick and Greenwood, 2015) it was found that the reason behind the doubt was often to clarify directions or tasks, and thus was attributed

“I wasn’t 100% that that was the right place to go… If you’ve got dementia… you automatically feel like you’re in the wrong place”.

-Betty

07_Discussion

to emotional distress. Doubt was recorded on 41 instances throughout the study [figure 34].

82 Memory Loss

Memory loss was recorded in most participants (n=4). This included forgetting tasks, places of destination and personal items. Tasks and destinations were recorded to have been forgotten on 12 occasions throughout the study.

It was recorded in some participants (n=2) that they initially forgot to pick up their personal belongings after the showing was finished and they were about to exit the screen. It was also recorded that most participants forgot places, and often seemed to get lost when making a return journey to somewhere that they had previously been.

Tasks were also forgotten, and reassurance of tasks had to be given to most participants (n=4). This was also evident that Betty also forgot to purchase popcorn. When this was discussed with Betty after the study, her reasoning was a very interesting discussion point, stating,

“…memory loss isn’t even a symptom of dementia.”

It was expressed by Betty that she had only forgotten the task in the moment of the study due to the distraction of the symptoms and the other tasks that she was completing, as opposed to having forgotten the initial conversation in which she was instructed to purchase popcorn.

This was an interesting aspect to the study as it gave an insight into the range of impairments of people with dementia, and how symptoms can

07_Discussion

exacerbate one another, as aforementioned in literature (Marquardt, 2011; Blackman et al., 2003; Mitchell, Burton and Raman, 2004).

07_Discussion

Figure 35. The table shows which tasks were completed by participants.

83

Implications for design

86 Implications for design

The study demonstrated that the use of architectural interventions and design features can enable or disable people displaying the symptoms of dementia. It is evident that as impairment increases the environment becomes more challenging for people with dementia (Blackman et al., 2007; Nahemow and Lawton, 1973; Mehendiran and Dodd, 2009; Sixsmith et al., 2007) and thus are more dependent on external cues to aid navigation (Marquardt and Schmieg, 2009; Nahemow and Lawton, 1973). There is a plethora of literature exploring the problems that people with dementia face when navigating and wayfinding (O’Malley, Innes and Wiener, 2015; Mitchell and Burton, 2006; Fleming and Purandare, 2010; Mitchell and Burton, 2006; Blackman et al., 2003) and these can be used to improve the accessibility of architecture.

As a result, guidance and literature has been formulated explaining types of architectural interventions that can aid these navigation problems (O’Malley, Innes and Wiener, 2015; Mitchell, Burton and Raman, 2004; Capstick and Ludwin, 2015; Mitchell and Burton, 2006; Blackman et al., 2003; Mitchell and Burton, 2010; Davis et al., 2009; Marquardt et al., 2014; Day et al., 2000; Higginbottom, Pillay and Boadu, 2013; Lecovich, 2014) [figure 36]. Colour, signage and lighting were found to be recurring themes through this study which could vastly improve the cinema-going experience for people with dementia. These themes reiterate the dementia design guidelines found through the literature reviewed (The Kings

08_Implications for design

Fund, 2015).

It is evident that colours are recorded to provide visual cues for people with dementia, which can aid navigation (Marquardt et al., 2014). It could be useful to exploit this through the internal design on Tyneside cinema. The main problems when navigating was found through vertical orientation; it could be implemented that different floors within the cinema could be colour coded. This also employs the notion of familiarity; if a person with dementia recognised a colour and associated it with a floor they would know where they needed to go, or if they had been there before as well.

87 Floor lights were mentioned by Betty and Drew as a possible architectural intervention that would have really improved their experience in Tyneside cinema. Lighting is recurrent in literature as an important environmental cue for people with dementia. This study restates this notion and demonstrates the need for such architectural interventions to be applied in public buildings as well as just healthcare settings, as they are at present.

This study begins to establish that guidelines for dementia design can be employed in a wide range of architectural settings. It was found that

guidelines to reduce this emotional impact and improve the entire cinema going experience for people displaying the symptoms of dementia.

The environment can therefore be seen as a toolkit for care (Habell, 2013; Joy, 2008) by maximising independence through good design (Utton, 2009; Mitchell and Burton, 2006).

08_Implications for design

Figure 36. Image explaining the Kings Fund guidelines for designing for dementia, with the aims for the outcomes of what the guidelines will achieve (The Kings Fund, 2015).

architectural features were the greatest cause of negative emotional behaviour in this study and could be improved with dementia friendly

Conclusion

90 Conclusion

Dementia is an incurable neurodegenerative disease (Sauer et al., 2014), and until a medical cure is found, a social model needs to be adapted to improve the quality of life of people with dementia (Davis et al., 2009; Brorsson et al., 2011; Swaffer, 2014; Kitwood, 1990; Mitchell et al., 2003; Schreiner,Yamamoto and Shiotani, 2005; Stewart-Archer et al., 2015; Beard, 2011).

Although it is argued that people with dementia lack the cognitive skills necessary to pursue happiness it is crucial to recognise that they still possess the skills to passively experience it (Schreiner,Yamamoto and Shiotani, 2005) and this experience of positive emotions is integral to quality of life.

Although dementia care facilities are required in certain cases of dementia (Macdonald and Cooper, 2007; Lecovich, 2014), sometimes moving people with dementia to care homes can create confusion and disorientation (Mitchell, Burton and Raman, 2004). Relocation can also entail losing social relationships, changes in routines, leaving personal possessions and a loss of independence (Lecovich, 2014). On an economic scale, institutional care is often more expensive than care in the community (Lecovich, 2014; Lepp et al., 2003) and creates an impending crisis of availability (Macdonald and Cooper, 2007).

It is therefore increasingly important, on both a social and economic scale, to encourage and aid people living with dementia to keep a

09_Conclusion

continuity of their previous lifestyle (Menne et al., 2002; Brorsson et al., 2011; Macdonald and Cooper, 2007); engaging in everyday life and living independently within their community (Lecovich, 2014; Innes, Page and Cutler, 2015; Swaffer, 2014; Joy, 2008).

91 This exploratory study has found that the symptoms of dementia are proven to present challenges for people with dementia when going to the cinema. Challenges were defined as instances where the continuation of tasks was impeded by direct result of the symptoms of dementia which were simulated. The main challenges that were found included features of the environment which were not ‘dementia friendly’; in the definition that they obstructed cinema-going, rather than supported it. It was also found that these challenges caused a greater emotional impact which resulted in displays of agitated behaviour from participants, as commonly seen in people with dementia (Holloran, 2014).

Lecovich (2014) highlights that the physical and social environment is currently designed for the mobile and functionally independent people, and designing for disabilities focuses on physical disability rather than environmental or social barriers (Mitchell et al., 2003; Mitchell and Burton, 2006; Blackman et al., 2003). However, it is equally possible to create ‘liveable communities’ which connect the physical design, social structure and social needs of all generations and all abilities that share a common location in the public realm (Lecovich, 2014; Innes, Page and Cutler, 2015; Mitchell, Burton and Raman, 2004; Mitchell and Burton, 2006).

The results begin to ascertain the position that all buildings within the public domain should be ‘dementia friendly’ in the sense that they can aid and eliminate the challenges posed by the symptoms of dementia and improve quality of life. The dementia design guidelines which are currently implemented into healthcare buildings can be shared across the public domain too in order to create dementia friendly environments.

Although dementia affects everybody differently, this small study begins to formulate an argument for inclusive design (Blackman et al., 2003) and explores the concept of public life rather than just public space (Carmona, 2003). There is also a growing importance to increase inclusion of 09_Conclusion

people with dementia in daily life (Handley, Bunn and Goodman, 2015) as well as in leisure activity, such as the cinema.

Limitations and future

research

94 Limitations of study and recommendations for future research

This research indicates the value of the cinema to people with dementia. However, theoretical and methodological problems identified through this work suggest important research directions to continue to explore the identified gap in the knowledge.

Researchers should select future participants with extended rigor according to a clear inclusion and exclusion criteria. Staging or profiling patients will help to increase accuracy, as will random sampling, selection and control groups. The study would be more credible if the simulation results were compared against results of the same tasks by participants without the simulation, in order to apportion just how much of the observations were a direct result of the simulated symptoms of dementia.

Although the sample selection was small the results show that improvements in the design of public buildings can aid people with dementia.

Further research should be conducted to ensure the reliability and validity of this work. Given that this was a small sample, the findings cannot

10_Limitations and future research

claim to give a comprehensive picture of all of the challenges faced by people with dementia. Although generalisation is sought so that the participant sample reflects the wider population (Robson, 2002, p.19), this sample selection is small and would benefit from further studies.

Findings from a larger study can start to inform design changes to aid the symptoms of dementia.

95 The influence of gender on this particular study was not a consideration of the researcher and is also lacking in existing research (Marshall and Hutchinson, 2001). This is therefore an interesting research direction to adopt in future studies.

This research is invaluable in understanding how architecture and activity can improve the lives of people with dementia.

This experimental case study examines only a small portion of symptoms of dementia, to develop knowledge in the field; replications with larger samples and a wider range of symptoms should follow. This case study is especially useful in raising questions for further research and permitting

10_Limitations and future research

experimentation with a variety of approaches.

References and

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100 Cohen-Shalev, A. and Marcus, E. (2013). An insider’s view of Alzheimer: cinematic portrayals of the struggle for personhood. International Journal of Ageing and Later Life, 7(2), pp.73-96.

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106 Figure 1. Di Pietro, L, (2016) Diagram showing the most common types of dementia (Prince et al., 2014) and their prevalence in cases.

Figure 2. Di Pietro, L, (2016) Common Signs and Symptoms of Dementia (Price et al., 2014; Halloran, 2014; Bailey-Hunt, 2013; Utton, 2009; Chung et al., 2015).

Figure 3. Di Pietro, L, (2016) There are cases of early onset dementia; however, it is found that there are about 1/688 people under the age of 65 diagnosed with dementia; 1/14 people aged between 65-80 years old; and 1/6 people over 80 years old are diagnosed with dementia (Prince et al., 2014).

Figure 4. Di Pietro, L, (2016) Statistics of an ageing population (Mitchell, Burton and Raman, 2004; Qiu et al., 2009).

Figure 5. Di Pietro, L, (2016) Diagram showing the purpose of activity for people with dementia (Marshal and Hutchinson, 2001;Vernooij-Dassen, 2007; Torrington, 2009).

Figure 6. How the symptoms of dementia cause challenges socially and architecturally.

Figure 7. Di Pietro, L, (2016) Image explaining the Kings Fund guidelines for designing for dementia, with the aims for the outcomes of what the guidelines will achieve (The Kings Fund, 2015).

Figure 8. Di Pietro, L, (2016) Data collection took part in three phases.

Figure 9. Di Pietro, L, (2016) The strengths and weaknesses of questionnaires.

Figure 10. Di Pietro, L, (2016) Table showing the materials used and the symptoms which they emulated.

Figure 11. Di Pietro, L, (2016) Illustration demonstrating how to wear the equipment for the study.

11_References and bibliography

Figure 12. Di Pietro, L, (2016) Goggles that could be used in future studies if stained yellow with the same black dots in the centre of the vision, that would allow participants to still wear glasses underneath.

Figure 13. Di Pietro, L, (2016) The strengths and weaknesses of simulation methods.

Figure 14. Di Pietro, L, (2016) The strengths and weaknesses of observation.

Figure 15. Di Pietro, L, (2016) The strengths and weaknesses of semi-structured interviews.

Figure 16. Di Pietro, L, (2016) Tyneside cinema is located in Newcastle city centre, which makes it easily accessible as a case study to both the participants and the researcher.

Figure 17. Photograph of third floor to locate popcorn (source: google images ‘Tyneside cinema’).

Figure 18. Photograph of Electra theatre room (source: google images ‘Tyneside cinema’).

Figure 19. Photograph of bar to buy popcorn (source: google images ‘Tyneside cinema’).

107 Figure 20. Photograph of buying popcorn (source: google images ‘Tyneside cinema’).

Figure 21. Photograph of third floor gallery (source: google images ‘Tyneside cinema’).

Figure 22. Photograph of Classic theatre room (source: google images ‘Tyneside cinema’).

Figure 23. Photograph of Classic theatre room (source: google images ‘Tyneside cinema’).

Figure 24. Photograph of Electra theatre room (source: google images ‘Tyneside cinema’).

Figure 25. Di Pietro, L, (2016) Tasks were told to participants after the simulation had begun and in the same order to ensure reliable results. A script was drafted to ensure that all participants had the same information to properly undertake the research.

Figure 26. Di Pietro, L, (2016) Tasks involved navigating around the cinema, both horizontally and vertically.

Figure 27. Di Pietro, L, (2016) The selected participants. * All information obtained was confidential and for the purposes of the data analysis names have been changed.

Figure 28. Di Pietro, L, (2016) The strengths and weaknesses of affinity mapping.

Figure 29. Di Pietro, L, (2016) Table showing the results of the pilot study.

Figure 30. Di Pietro, L, (2016) The graph above shows the comparative responses in the answers given in the survey questionnaire before and after the simulation study.

Figure 31. Di Pietro, L, (2016) Affinity mapping was used to decode themes as shown in the photograph.

Figure 32. Di Pietro, L, (2016) The themes were based on a hierarchy of two main categories, and then further distributed into subcategories.

Figure 34. Di Pietro, L, (2016) Graph to show frequencies of recorded behaviours.

Figure 35. Di Pietro, L, (2016) The table shows which tasks were completed by participants.

Figure 36. Di Pietro, L, (2016) Image explaining the Kings Fund guidelines for designing for dementia, with the aims for the outcomes of what the guidelines will achieve (The Kings Fund, 2015).

11_References and bibliography

Figure 33. Di Pietro, L, (2016) The themes from the affinity mapping are shown in the diagram.

Appendix

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Appendix 1 themed literature table

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Appendix 2 participant information form

166

Participant Information Form Personal Information Name:

Are you Male or Female?

Please circle your answer.

Age:

Email Address: Occupation:

Is cinema-going important in modern-day society?

Please explain your answer.

Have you ever been to Tyneside Cinema before?

Please circle your answer.

Y

Y

/

N

/

N

167

Have you ever been to Tyneside Cinema before?

Please circle your answer.

Y

/

N

Have you ever had any training or information about dementia or dementia awareness?

Please circle your answer.

Y

/

N

If yes, please specify.

How often do you go to the cinema?

Please circle your answer.

Daily

Weekly

Monthly

Every couple of months

Do you have any health problems that may affect your ability to undertake the study?

If yes, please give details below.

Never

Y

/

N

168

169

Appendix 3 survey

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171

SCALE SURVEY

Name:

For each item identified below, circle the number to the right that best fits your judgment. There is no correct answer.

Use the rating scale to select the quality number.

Scale

Survey Item

D i s a g r e e

A g r e e

1.

I have a good knowledge of dementia

1

2

3

4

5

2.

People with dementia can get out and about easily

1

2

3

4

5

3.

It is easy for people with dementia to go to the cinema

1

2

3

4

5

4.

Tyneside cinema is easy to identify as a place for people with dementia

1

2

3

4

5

5.

Tyneside cinema is well designed internally for people with dementia

1

2

3

4

5

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Appendix 4 interview questions

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175

1.

How did you find the study?

2.

Was there anything that you found to be surprising through undertaking the study,

that you may not have anticipated that you would experience? This could be feelings, difficulties, tasks etc.

3.

What aspect of the study did you find most challenging?

4.

Were there any points of the study that you found to be exceptionally difficult

emotionally?

5.

Were there any points of the study that you found to be exceptionally difficult

physically?

6.

If you completed the study, did you experience any moments in which you wanted to

terminate the study? Please explain your answer.

7.

If you did not complete the study, why?

8.

Was the study insightful?

9.

Was the building accommodating to you, as a person with dementia?

10.

Were there any particular things that you felt would have made your experience, as a

person with dementia, easier? Please explain your answer.

Thank you for taking the time to read this piece of work.

It is greatly appreciated.