ForgetMeNot - dementia friendly walking routes

forgetmenot

dementia friendly walking routes report thesis project - 2016 emmy linde - emlin@edu.kadk.dk keystrokes 35 620

the royal danish Academy of fine Arts school of design mA-program in co-design tutor - eva Brandt

Acknowledgements

Thanks to all my collaborators from Næstved Municipality; Inge Selch, Karen Lennert and especially the ones connected to Symfonien; Sonja Müller, Karin Monssen, Mette Pittelkow, Anette Bødker, Hanne Grønbek and all other staff I have been in contact with. Without you this project would not have been and I am grateful for all the energy you have been putting into this project.

I also want to thank everyone participating in interviews and workshops.

Thanks for sharing your knowledge and experiences with me and for exploring future possibilities together. A special thanks to everyone at “Aktiviteten” and to all of the relatives to residents at Symfonien, that I have met through the project.

A big thanks to my tutor Eva Brandt for all the support during this project.

Working alone is not as hard when you have someone to discuss it with.

Thank you to my friend Bettina Nelson who helped me document the process.

Last but not the least, thanks to everyone who have supported me throughout this project. It means the world and I could never have done it without your support!

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Introduction

You are about to read the report of my thesis project at the Royal Danish Academy of Fine Arts - School of Design.

During the last four months I have been exploring how to make dementia friendly walking routes in NĂŚstved, Denmark.

Through iterations of workshops, we have been exploring ways of making the walking route safe, inspiring and motivating.

There is of course much more to be said about the project than can be written in this report, so if you are interested visit the process blog on www.forgetmenotdk.tumblr.com At the back of this report you will find an appendix with interviews (both written and audio), project program and the process-videos. Enjoy!

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index Background 8

“Out of ones mind” 8

Næstved - a dementia friendly city 10

Safer ways of walking in urban space - ForglemMigEj 11 Main collaborator 12

Short overview of stakeholders 16 Designchallenge 21

Approach and methodology

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A co-design approach 22

Dementia, physical and meaningful activities 24 Dementia & outdoor space 26 Existing guidelines 27 Dementia and wayfinding 29

co-desigN Process 31 Timeline 32

Workshop 1 - “a walk with our senses” 36 NaturFitness 42

Workshop 2 - “walk the walk” 44

Workshop 3 - “NaturFitness with a twist” 60

Discussion 71

A general design solution for a group of individuals 71

Remembering with our senses 72

Motivation through conversation starters and curiosity 75 Experiencing instead of talking 76

The existing as an inspiration 78

Exercising with a playful twist 81 Experiencing it together 82

The physical surroundings supporting wayfinding 84

Ownership and sustained participation 86

Conclusion 88

Outcome 89

Bibliography 90 appendix 93

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background

To set the frame of the project this chapter is about the background, the idea of a dementia friendly walking route and my collaborators.

“Out of ones mind” Dementia is Latin meaning “out of ones mind”. It is a disease that is gradually weakening your mental abilities and the outcome is fatal. There are more than 200 different kinds of dementia diseases, the most common being Alzheimer’s disease. (http://www.videnscenter- fordemens.dk) There are various symptoms of dementia, such as memory loss, challenges planning or solving problems, confusion with time or place, trouble understanding visual images and spatial relationships, changes in personality and mood and problems remembering words, both in text and in talking. (http://www.alz.org) According to the Alzheimer Association in Denmark approximately 8000 people get diagnosed with dementia every year. In total there are between 70.000 and 85.000 people with dementia in Denmark today. It is a growing disease and it is estimated that at present more than 400 000 people are affected by dementia in their family. (www.alzheimer.dk) Even though dementia is one of our most common diseases there is a lot of shame and taboo in relation to being diagnosed and living with the disease. Since the amount of people diagnosed with dementia is increasing there has gradually been a bigger focus in Denmark on how to make the society able to treat and care for the many people diagnosed with dementia.

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Næstved – a dementia friendly city Næstved Municipality wants to be a dementia friendly city, understood as a city that is planned for people living with dementia, with better conditions and acceptance for citizens living with the disease. “Dementia friendly cities” is an initiative taken by “Demensalliancen”, who overall have three visions and goals for their work. First of all, no one should be alone with dementia in Denmark.

Secondly there should be invested in a good and worthy life for people diagnosed with dementia and their relatives and thirdly that Denmark should be a country to look up to in terms of care for people living with dementia and their relatives.

The three visions have then been turned into different goals, where one is to create “Demensvenlige Byer” (dementia friendly cities). This means for example that the city should not just be good in health care but also have a system for keeping the caretakers knowledge on a high level. The dementia friendly city should also include better ways of helping relatives to people affected by dementia. And the city and the living arrangements in public and urban space should be designed in a way that people living with dementia can use it and feel safe doing so (“Aldrig alene med demens.” 2015). In order to start working towards these goals, Demensalliancen invited 6 municipalities to work with them towards being more dementia friendly, one of them being Næstved Municipality, which is the municipality that I have been collaborating with.

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Safer ways of walking in urban space - ForglemMigEj In relation to urban space an important goal is to create safer ways for people with dementia to move around the city. This will assist them in staying active, but also meeting people from the local area. It is important to stay active and recent studies have shown that one can reduce symptoms, such as depression, anxiety, restlessness and changes in the daily rhythm, by physical exercise. (www.videnscenterfordemens.dk) However one of the symptoms of dementia is also lack of initiative, interest and motivation (Marquardt, 2011). The way the municipality wants to obtain this is by creating various walking routes that should be both safe and interesting for people living with dementia to use, by themselves or together with relatives (Demensvenlig aktionsplan, 2015). The name of this walking route is “ForglemMigEj” (ForgetMeNot) inspired by the flower “Forget-me-not”.

The municipality’s intension is to create different walking routes around Næstved, with different lengths and paths and to make sure that they are safe to use for a person with dementia. They also want people with both early and late stages of dementia to be able to use it. My thesis project is the start of this project.

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main collaborator symfonien My main collaborator in Næstved has been “Symfonien”, a nursing home and an activity centre for seniors in the northern parts of Næstved. “Symfonien” is a newly built (2009) nursing home surrounded by open fields in a new part of the city.

Since Symfonien have been my base during the project, Sonja Müller (administrator) have been my main contact, together with Mette Pittelkow (dementia specialist) and Karin Mundt Monssen (coordinator of activities) at Symfonien. They have been my main contacts and have helped me arranging meetings and recruiting for workshops.

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walking paths The three buildings are connected through a pergola, giving shelter from rain or snow. Unfortunately it makes the area look very empty and cold, since the metal of the pergola is not giving any tactile experience.

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surroundings Symfonien is surrounded by big fields on one side and a big road on the other.

There is a lot of empty space that could be used better than it is today. enclosed gardens To create safe outdoor areas for the residents an enclosed garden is placed outside the living units. It is surrounded by a high fence and it is not used much, since there is not much to do or see inside of the garden.

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outdoors It is very windy between the buildings and plants have had a hard time growing.

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Short overview of stakeholders nĂŚstved municipality Inge Selch senior administrator Karen lennert consultant

grith andersen landscape architect camilla engbo jonassen cityplanner

symfonien Sonja MĂœller administrator district north

mette pittelkow dementia specialist karin Monssen coordinator - activities & volounteers

Anette bødker ergotherapist

physiotherapists Karen Dorte Ditte Karin

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Short overview of stakeholders aktiviteten

activity centre at symfonien hanne grønbek social & Sundheds assistent

other staff

living with dementia

cykling uden alder

volounteers biking with residents at nursing homes stig hansen volounteer

torben sørensen Technical support

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Short overview of stakeholders workshop participants staff living with dementia relatives

vagn vestergaard

other contacts Lise nevstrup andersen ergotherapist

Torben nielsen Ballerup nursinghome

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alnarp rehab garden

research and rehab garden in the south of sweden Anna Bengtsson landscape architect Anna GEITE

Statens Byggeforskningsinstitut nanet mathiasen architect

SBI course “Demensvenlige Plejeboliger�

other contacts Catharina thiel experimentariet

alexandre alapetite ITU - alexandra institute

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Designchallenge

In this project I wanted to explore what a good walking route was, for people living with dementia and for their relatives and staff. What should a walking route like this contain, to be safe and still inspiring and motivating? I wanted to see how a walking route could be created so that one could experience it together with friends or family but also be able to enjoy it alone. Is there a way that our physical surroundings can enable activity and help a person find their way? In the beginning of the project I stated the following four design challenges for myself: What are the challenges and potentials in designing a walking route for people with dementia?

How can one use design in order to help people with dementia find their way?

How to create a safe (being able to find your way and not get lost) walking route for people with dementia to use?

What should the walking route contain to be both inspiring and motivating for people with dementia to use?

How can one involve people with dementia, relatives and professional caretakers in Co-designing a walking route?

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Approach and existing research

In this chapter I will explain more about how I have approached the project and what existing research in the field says about dementia and our physical surroundings and of wayfinding.

A co-design approach In “Rehearsing the Future” a design-anthropological innovation model for co-designing is presented. Overall there are three strategies: exploratory inquiry, sustained participation and generative prototyping (Halse et al. 2010).

Exploratory inquiry meaning a co-design project is research without a hypothesis to be tested. Entering the project with a concern in understanding the purpose and intent of the project. Throughout the project I have been working with this focus. I wanted to explore what and how walking was for the participants and raise questions and ideas on how one could develop a walking route for and together with them. What were the challenges in walking, concerning safety and motivation and how could one address them? By entering the project without a clear end goal the project had the possibility to be shaped by the participants and the real issues and challenges of their everyday.

And all the way through this project the exploration has been done together with the participants. This takes us to the second strategy; sustained participation. In a co-design project it is important to establish and sustain participation all through the project. And to keep your stakeholders motivated and engaged in the dialogue about the project. I have during the project been recruiting people with different connections to dementia, people living with the disease, relatives, caretakers and other staff at Symfonien. It has been hard to recruit and keep a sustained participation from the ones living with dementia, but I have managed to get a group of invested people that have been part of the project along the way. Some of the participants from Symfonien have even participated on their day off of work! One of the six main principles of DAIM (Halse et al. 2010) is the one concerning the importance of not working alone, to recruit and mobilize stakeholders to both explore the well known together and to sketch on a possible future. My project have very much been concerning this principle of mobilizing participants and it have made a huge different to my project.

The third strategy is generative prototyping. Prototyping is an active part of any design project, but in a co-design project the prototyping is less about evaluating and more generative and participatory. Prototyping in Co-design are for exploring and generating more ideas, more than testing and evaluating if the prototype is working. I have been working with prototyping in scale, working with the exploration of the surroundings as a part of a whole. I wanted to see it as setting a stage, in the same way as Kronqvist et al (2013) did in the project “Cardboard Hospital”. By using real size prototypes for the participants to engage with they moved

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from saying to doing. They used abstract shapes to be used as chairs, lamps, beds and so on. By doing this they got the participants to think more open-minded about the future hospital. During this project my prototypes have been made fairly quickly and have been low-fidelity ones (Preece et al., 2002), meaning they are easy and fast prototypes that can be changed along the way.

The approach of using abstract objects to use your imagination is something wellknown in Co-Design and Participatory Design, the issue when working with people affected by dementia is that they might have problems with abstract thinking and therefore I actually had to do exactly the opposite of what Kronqvist et al (2013) is saying, namely using real existing furniture and objects, to create this stage.

By doing so it was clearer and more visible for the participants what we were exploring together, knowing that a ball is for kicking and so on. By using other ways of explaining I could help the participants to understand, instead of using abstract or visual thinking (Branco et al. 2015). When working with people affected by a disease like dementia, it is very important that you are able to focus on their abilities, instead of their disabilities. Since they in many other aspects of life are used to failure and not being able to do what they have been doing before.

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Dementia, physical and meaningful activities It is well known that physical activity is important for all people. However one of the symptoms of dementia is also lack of initiative, interest and motivation (Marquardt, 2011). This can make a person inactive for days if no one helps them to get up and out. The problem in this is that one of the known things that can help on many of the symptoms and keep the patient healthier is physical activity.

Since we are not able to cure dementia at this time, everything that can be done to reduce symptoms is a way of increasing quality of life for the person living with dementia. During a project at “Videnscenter for Demens” they have gathered people in small groups for workout sessions and both the social part as well as the physical workout have been helpful for treating the typical psychological symptoms, such as depression, anxiety, restlessness and changes in the daily rhythm. (www. videnscenterfordemens.dk).

The intention for creating this “Forget-Me-Not” walking route is to create something that hopefully can motivate people affected by dementia to use it and thereby be more active. Another intention with creating a walking route in the public space is that people using the route will meet other people in the area and hopefully interact, one way or the other. The connection to the neighbourhood is important for people to still feel like a part of society (Kitwood, 1999).

When creating a walking route to inspire and motivate to physical activity it is important to make sure that the activities placed during the route are meaningful and inspiring. Research have shown that for gardens to be used more often there has to be planned and meaningful activities in them (Clare Cooper, 2014). There is something human about wanting to be a part of something meaningful. If the possibility of taking part in activities is taken away from someone, the ability of that person will also shrink (Kitwood, 1999). There is a need for meaningful activities and a possibility to take part in them, on your own terms.

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Dementia & outdoor space Already when treating people at the first “hospitals” in the monasteries the surroundings, such as landscape, air and sound were considered important. It was acknowledged that spending time in the open landscape with fresh air and water helped the patients get well sooner (Verderber, 2010). Many nursing homes today are creating “healing gardens” or “sensory gardens” for their patients. Especially patients with dementia are argued to gain a lot from spending time in them.

Spending time in nature has a calming effect and can bring back memories for patients. Often the “normal” outdoor areas can be too confusing for a person with dementia and they might not feel safe going out, not knowing if they can find their way home again. When the garden is especially created for their abilities it can provide a safe place for them to walk around by themselves and to remember with their senses (Hartig et al. 2006). Often smell and sound has a deeper impact on us, than other senses. And when other senses, such as sight for example, are weakened it is important to address our other senses. Research has proven that when spending time in environments designed to stimulate our senses we feel better (Nevstrup Andersen, 2009). For a person with dementia, the design of the environment is especially important, since they are less able to alter it themselves (Clare Cooper, 2014).

Often the outdoor spaces of nursing homes are not used as much as the intention was. Chalfont (2015) means that one reason can be that the outdoor space is not enabling action. We need to create enabling design, which means design that is designed so that it is enabling activity. By for example placing a bench outside in the sun, we are enabling the act of going outside and resting on the bench. To make a place enabling one should also think of the facts that the environment has to be meaningful and make sure that the different spaces relate to each other, to make an easy transition. One especially important transition is the one between indoor-outdoor (Bengtsson, 2015). When designing for people with dementia, or any other group, it is important that the outdoor design already starts inside. For a person with dementia it can be hard to know what “going outside” means, but by providing them with a “sneak peak” of what outside is like, they are more likely to go outside.

Anna Bengtsson (2015) also mentions three aspects to take into consideration when designing for people living with dementia: comfortable design, inspiring design and the gradient of challenge. It is of importance that the outdoor area is comfortable, which include that it is easy to access, safe, familiar, planned for use in different weather and that it is easy to find your way. Inspiring design meaning design that will inspire and stimulate your senses and intellect. And finally the gradient of challenge means that it is important to create something that gradient in activity and provide a possibility to choose from your own abilities.

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Existing guidelines In Denmark Statens Byggeforskningsinstitut (SBI) have provided guidelines (2015) on how to plan and design for people with dementia. In those guidelines they state a long list of questions to consider before planning for a nursing home. In the list there are a few things concerning the outdoor spaces, but not many ideas on how this can be done in practice. The importance of access to outdoor space is mentioned, that there should be an easy transition from inside to outside and that the enclosed garden is accessed through the common areas. The importance of different places to sit and different things to experience is also mentioned. As well as to plan for a playground or activities for kids visiting the nursing home. Many of the guidelines are also addressing the need for specially solutions for wheel chair-users or people with other disabilities. You don’t have to follow the guidelines provided by SBI when building and therefor many of the aspects are not taken into consideration when building new nursing homes.

During this project I wanted to explore how SBI’s guidelines could be incorporated into the existing physical surrounding of Symfonien and if there would be other aspects that were not addressed by SBI in their guidelines.

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Dementia and wayfinding When creating a garden or a walking route for people with dementia it is important to create a place or a path that is easy to “read”. The ability of finding one’s way is something we often take for granted and when this ability is decreasing, for example due to dementia, the ability to read and understand your surroundings is weakened (Marquardt, 2011).

The spatial disorientation among people living with dementia is one of the main reasons for institutionalization and when planning and building nursing homes there is a lot to gain from designing it to help the orientation among the residents.

People living with dementia have also got less capacity to influence their environment, so there is an importance of a design that meets their specific needs (Marquardt, 2011).

The architecture can play an important role in this. By using the architecture to create environments that are easy to navigate in (Marquardt et al, 2009). The use of location points to navigate from, for example a kitchen, or an easy read long wall to follow to the common area. It has also been proven that many people living with dementia have the ability to navigate through the physical surroundings (Sheehan et al, 2006), by navigating through physical landmarks. And that they were able to read signs and pictograms, if they were easy to understand and well thought through. This came as a surprise, since earlier research had shown that people living with dementia was likely to be confused and not be able to understand typical sign designs.

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CO-design Process

This project has included a lot of interactions; meetings, field visits and workshops.

To get an overview of the co-design process, take a look at the timeline on the following pages. The timeline will be followed by a couple of pages to describe the main iterations of the project - workshop 1, 2 and 3.

Visits During this project I have visited existing gardens in Ballerup and in Alnarp. At Ballerup Nursing home they have a sensing garden that you can enter from the common area in the living units. It is divided into four different themes (backyard, villa garden and so on) to make sure that everyone can recognize one of them. In Alnarp I visited their Rehab Garden that is a part of the agricultural school where they research on the benefits of garden therapy.

I have also visited “Aktivitetenâ€? which is the activity centre at Symfonien, providing activities for citizens living with dementia, such as bus tours, walking and biking etc. meetings Meetings have been held with represents from the municipality, dementia specialist, activity coordinator, landscape architects, ergo therapists, physiotherapists, caretakers and relatives in NĂŚstved Municipality.

I have also met with different experts, concerning subjects as technology, landscape architecture, dementia gardens and so on.

Workshops When planning for the workshops I have had four aspects of walking in mind. They have been: activity/physical activity, motivation/inspiration, wayfinding/safety and our human senses. I will get more into detail on the following pages,

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TIMELINE 11/2

FIRST MEETING Inge & Karen / Sonja

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18/2 HAND IN program

1/3 9/3

1

Grith & Camilla Mette & Karin

Existing walks

14/3

Sensory room Bustour

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18/3 Visit Alnarp

6 /3

30 /3

Meeting Vagn

Bike tour

1/4

15/3

Visit nursinghome Meeting Nanet

5 /4 WORKSHOP 1

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19/4 18/4 UPDATE Sonja SBI Course

15/4 Experimentariet

11/4

27/4 Ballerup plejehjem

Meeting Alexandre - ITU

6/4

Physio therapists

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21/4 Meeting Torben

25/4

WORKSHOP 2

16 -17/6

EXAMINATION

26/5 HAND IN Report

10 /5 WORKSHOP 3

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Workshop 1 “a Walk WIth oUr seNses�

8 participants: 1 diagnosed with dementia, 2 relatives, 1 ergotherapist, 1 caretaker, 1 dementia specialist, 1 coordinator for activities and volunteers and the head of the nursing home During Workshop 1 we focused on our senses. By using a box of objects connected to our senses we made walking routes that could be walked with our senses.

Placing pictures and writing down how the 5 stations would look like and at the end guiding each other through the walk.

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Exploring the objects of the box

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A walk with our senses

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Guiding the group through the walking route

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Each group created a walking route with 5 stations, focused on our different senses.

Creating/playing together

Experiencing nature

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Spending time together

Relaxation

Fitness

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NaturFitness On of the things that were mentioned several times during Workshop 1 was “NaturFitness”. “NaturFitness” is a concept of outdoor fitness in the neighbourhood.

During Workshop 2 and 3 this concept have been developed into a dementia friendly “NaturFitness”. Many of the existing exercises are too hard or too difficult for someone older.

Crawl under the net.

Crawl through the tunnel.

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Jump from log to log.

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Workshop 2 “walk the walk�

9 participants: 1 couple (1 diagnosed with dementia + 1 relative), 3 relatives, 1 ergotherapist, 1 caretaker, 1 dementia specialist, 1 coordinator for activities During Workshop 2 we walked the actual walk where we explored different staged stations/activities, based on research, interviews and workshop 1.

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PHYSICAL WAYFINDING

FOLLOW A STRING “What if there was a string that you could follow all way through the route?” tactile wayfinding How to implement it: Make sure that the idea is incorporated into the design to avoid the feeling of caution tape or a fence. Important to use a bright colour.

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FOLLOW A COLOuRED LINE “What if the road was marked with a colour?� physical wayfinding/use of colour How to implement it: Make sure that the whole road is coloured and that different routes have different colours. The idea could also benefit from being combined with the use of a different material.

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uSING DIFFERENT MATERIALS “What if the material of the road could help you find your way and help you exercise?� tactile wayfinding/balance exercise How to implement it: If using it as a part of the wayfinding-system, the whole route should be in the same material and materials should be chosen carefully.

If using it for exercise, there should be handrails or other things to get support from when walking on the materials.

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SIGNAGE “What if there were signs telling you how much you had left of the walk?” signage/use of a “growing” flower for measuring the walk How to implement it: Make sure that the signs are easy to see in the surroundings and easy to understand. For example the white background should be changed into another, darker colour. The distance should be around 12-15 meters so that people with bad sight can follow them. If the route is turning the use of two signs right after each other can be used to guide.

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GPS-TECHNOLOGY “What if there were someone telling you where to go next?� individual guidance/addressing your senses How to implement it: If working further on this idea one need to make sure to create a variety of options so that a person can use it after their own abilities. Also important to make sure that one will not have to keep an eye on the technical device for the whole walk, but that one will get informed when there is new information to read.

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ACTIvITIES AND ExPERIENCES

PICNIC/COFFEE BREAK “What if you could bring your coffee outside?” being together/enjoying the outside How to implement it: Make sure that there is easy access to the outdoor areas and that there are places to sit and to enjoy your picnic/coffee/sandwich. If it is easier to stay inside, we will stay inside.

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RESTING “What if you could eat an apple under the apple tree?� taking a break/using the existing How to implement it: Make sure that benches are placed in different locations, so that one can choose if one wants sun or shadow, to be social or to be alone.

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BALANCE - ExERCISE “What if you could exercise your balance along the route?� playful exercise How to implement it: Make sure that the balls are not too heavy, since they will come back and might hit you. Important to use bright and playful colours.

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WALKING THE STAIRS “What if there were something interesting at the top, that got you up the stairs?� use of triggers to get up the stairs How to implement it: Make sure that there is something at the top, so that walking the stairs is not the goal in it self. Look at the existing and see the potential in using it.

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OuTDOORS INSTRuMENTS “What if you could make music outside?” use of our senses/creating something How to implement it: Make sure that they are visible, use bright colours and place them along the main walking path so that one can’t miss them. Invite the kids at school to make them.

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KITCHEN GARDEN “What if you could go outside and get some herbs for dinner?� meaningful activity/conversation starter How to implement it: Start small. One idea is to invite neighbours to create the kitchen garden together and by doing so creating ownership in it. Make sure that it is not too far from the living units, since it can be hard to walk too far to get to it.

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Workshop 3:1 “NatUrFItNess WIth a tWIst�

10 participants from Aktiviteten (6 diagnosed with dementia, 4 caretakers) Together we explored 5 stations with different exercises.

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WALKING THROuGH PORTS walking on uneven ground/coordination/bending knees Make sure that the ports are big enough for a wheelchair or for someone supporting the person walking through. use bright colours to trigger curiosity,

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BALANCE-BOARD balance Make sure that there are handrails to support and enough space for someone to support on the side.

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THROWING A BALL balance/coordination Make sure that it is always possible to score, by using different sizes of boards and by placing them in different distances.

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THROWING RINGS balance/coordination Make sure that there are different sizes of rings and different distances. Rules can be changed along the way.

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KICKING/BOxING HANGING BALL balance Important that the ball is not too heavy, since it will come back. Good to have someone supporting you. Make sure that the hanging balls have bright colours and that they are placed along a natural walking path.

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Workshop 3:2 “NatUrFItNess WIth a tWIst�

2 participants - 2 relatives

Walked the walk and talked about signage and how it can be made.

Tried some of the exercises and talked about the workshop during the morning.

Ideas on how scores could be kept and other suggestions were raised.

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Discussion and conclusion

On the next couple of pages I will discuss the outcome of my project, divided into nine different themes, to be able to address all the aspects important to co-designing with people living with dementia and how to make a dementia friendly walking route.

A general design solution for a group of individuals There is a great challenge in designing for a group of people, only linked together by their dementia diagnose. They are all individuals, coming from different backgrounds, enjoying different things and experiencing different challenges. As Ergotherapeut Anette Bødker said during workshop 1 (appendix I), it is crucial for us to know whom the person is to be able to find out what will trigger and motivate them. For example a person who have coached a soccer-team for years would most likely want to go outside if he saw a group of people playing soccer, while another man who have always worked in his garden would be motivated by seeing a lawn-mower or a tree that need to be trimmed.

Since dementia is constantly evolving, things you were able to do yesterday may not be the things you can do today. The degeneration makes it hard to create something that fits everyone. If wanting to create something general and for everyone, that can also be used during different stages of the disease, it is important to work with a variety of activities, levels and lengths, to make everyone able to find something that fits them. There should be both places to relax and places to be active. Places where one can be alone and have some privacy and places to be together, a gradient of challenge (Bengtsson, 2015). When groups were to create “a walk with our senses” during workshop 1, they all created this gradient of challenge in their walks. When walking from one “active” station there was always a more “passive” station placed next to it. They all addressed the need for both activity and for places to relax.

One way to create an individual solution could be to use technology. Many use GPS – technology in our everyday and almost everyone owns a smartphone or a tablet. At nursing homes GPS – technology is often used to find residents wandering off of the nursing home but the technology is not being used to help the residents find their way, even if the technology could make that happen. There are already some research done on this aspect and I have also met with Alexandre Alapetite (appendix H) to further look into the idea of using technology. But since my background is in Spatial Design and the focus of this project is the physical environment I have decided not to work further in this direction, but there are many possibilities.

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Remembering with our senses Our senses can trigger memories we thought we lost. Recent studies have also shown that if one of the senses is stimulated to evoke a memory, other memories connected with other senses can also be triggered (Feddersen et al, 2014). For a person living with dementia, the use of sensory input is extremely important to help evoke memories and start conversations.

Since every person is unique, the sensitivity towards sensory input is different.

Some people might need less of it, to be able to relax while others need much more to help them stay active. When visiting the “sensory room” at Symfonien, ergotherapeut Anette Bødker told me about the challenge in finding the exact right amount of sensory stimulation for the different people living at the nursing home.

Again it is clear to see that there is a need for an individual solution and this might again be solved by working with a palette of gradient activities and sensory input along the path. There should be the possibility of choosing ones preferred grade of sensory input and be able to walk away from too much input.

Our senses can also help us find our way (Kramer, 2012). If sight is weakened we use our hearing or for example tactile input – like the design for blind on streets, where small differences in the material is guiding where to go and where not to.

When creating a walking route for people with dementia, one can by addressing many senses at a time, be able to create a solution that can help many more find their way, than if one would just use signs for example.

It has been addressed during the workshops by combining a lot of different ideas on how one in the physical space can help people find their way. This combination could for example be the use of signs, combined with a coloured material on the road. By colouring the whole area one can make sure that the person walking will not be too focused on following a smaller line or string for example. By using a different material than other walking routes one can make sure that this is also helping the weakened in sight. In this way one can guide people by triggering different senses.

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Motivation through conversation starters and curiosity For a person with dementia the lack of initiative also affects their ability to start conversations (Andersson, 2007), which leave their relatives or caretakers responsible for the conversation. When visiting “Aktiviteten” and participating in their bustour, it was clear to me that the caretakers used the surroundings as conversation starters or motivation for walking. For a person with dementia conversations about things that we can’t see are too abstract, but when talking about the first spring flowers in front of us (see picture to the left), everyone can participate in the conversation.

In the design of a walking route this aspect is important to take into consideration.

This is what Bengtsson (2015) call inspiring design, design that can stimulate your senses and your intellect. Ergotherapeut Anette Bødker mentioned during workshop 1 that she had experienced how much easier it was to get her patients outside if something interesting happened there. Any kind of movement would do.

It could be anything from a fountain, kids playing outside or a beautiful flower.

Curiosity is an aspect not to be forgotten in planning for a walking route. By adding elements that need to be explored one can get people interested in walking further. During workshop 3 (appendix) one of the participants was about to throw the ball in one of the games, but suddenly saw the next station asking what it was and just had to go over and try it out. By doing so she directed everyone’s focus to the next part. Afterwards they all wanted to participate.

To create something or see something happening as a result of your actions is also motivating and is a way of making the participants motivated to continue. When trying out the instrument (workshop 2) one can directly see that your movement of a stick through the “instrument” create a sound. You can choose how fast or slow, high or low the sound should be. The same thing happening when playing a game and experiencing everyone’s reactions to when you score. There is a response to your actions.

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Experiencing instead of talking Often when gathering participants in a design project there is a lot of talking.

During this project I wanted us to experience the things we talked about and staged a walking route during workshop 2 and 3. The idea was that we would then explore the stations together, interacting with the materials and one would get an immediate reaction, instead of speculations.

During workshop 1 this interaction and exploration was through the box and the map they had to fill out, for a walk with our senses. By exploring and interacting with the material one could move from talking to actually starting to create the walking route together. When entering workshop 2 and 3 the focus shifted to actually walking the walk and experiencing the different activities and stimulation of our senses.

Many of the ideas were ideas from workshop 1 that the participants thought were too difficult to actually create. By making low-fidelity, quickly made prototypes I showed them that it could be made and that it doesn’t have to take that much to get started. One of the examples being the kitchen garden, which of course when created in a large scale would be time consuming and difficult, could actually quite easily be made in a smaller scale and still give the participants a sense of what a kitchen garden could look like.

By doing this, staging the different ideas, creating as a stage to enact and rehears what could be the chance that the participants will actually carry out some of the ideas are increased. For example after workshop 3 some of the caretakers and relatives said that they had many more ideas on how they could use different activities outdoors. The ideas staged during the workshop were just a start and they themselves could see many other options.

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The existing as an inspiration There are many great intentions and ideas for how to make NĂŚstved dementia friendly, but there is always the issue of money. Therefor it is important to work from the existing and in this case the existing outdoor area of Symfonien. One can of course be critical to the existing design but nothing good comes from just wanting to start from scratch, because that is not likely to happen. By being critical but proposing a different use of the existing one can really change the area and make something new happen.

It is important to see the potential in the existing and to see potential usage of the existing space. When visiting Alnarp Rehab Garden (appendix F) Anna Bengtsson told me how their stroke-patients used the existing outdoor, for example a small hill in the existing garden, as exercise for their balance. And both the physiotherapists and ergotherapists at Symfonien work in the same way. When the physiotherapists are visiting a patient in their home, they use whatever is at reach; a rolled mat is for example a perfect balance exercise (appendix E).

During workshop 2 and 3 I wanted to show the participants the potential in their everyday space – Symfonien. By adding new activities and stations in their existing space I wanted them to explore other ways of using it. When exploring the games during workshop 3 one of the participants said she already had a lot of ideas on how this space could be used for other games for her and her mother.

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Exercising with a playful twist Activities in general and meaningful activities in particular is important to incorporate when designing an outdoor space or walking route for people with dementia (Feddersen, 2014). Being part of a meaningful activity give a sense of normality in daily life and it makes us happier and healthy for longer. Especially physical activity is important, as mentioned earlier, for people living with dementia.

What has been proven to work during the workshops have been exercises where the exercise in it self is not the goal, but just a mean to get to the goal; for example that the view from the top of the hill can motivate you to walk the stairs.

Another thing proven to be important has been the familiarity and playfulness in the exercises. When passing by the hanging ball most of the participants knew that it was for kicking or boxing. It was familiar. The colours of the ball made it look less serious and it stood out in the surroundings, which made it easier for the participants to notice it. The familiar activities during workshop 3 were also the ones that worked best. They were the ones where I didn’t have to explain exactly how to do it, but intuition said that the ball or the ring was for throwing.

The existing “NaturFitness” is working well for the target group of people using the area to run through, but is not well suited for an older person or someone with dementia. All exercises are explained through pictures, which would work well for a person with dementia, but many of the exercises are just to difficult and hard. When creating “NaturFitness with a twist” there is a need for easier and less “serious” exercises, a more playful approach, both in exercises and in design. For workshop 3 I therefor choose to paint all the exercises in neon colours, to give the whole design a playful look and to make it work together with the hanging ball from workshop 2. The colourful prototypes was proven to work very well, since many of the participants kept asking about the next station when suddenly seeing it from a distance.

If wanting spontaneous exercises you should make sure that the exercises are easy to understand, that you immediately know how to use it. If not, you have to participate together with someone who can read and understand the signs explaining the exercises, which of course would also be a nice take on it. Doing it together.

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Experiencing it together The social aspect of the walking route is of great importance. During workshop 1 many of the ideas for activities were activities that we experience together, such as eating, drinking, playing games or gardening. By doing something together with your relatives or friends we get a moment of togetherness. This togetherness might be hard to get from a conversation between someone with dementia and a relative. When participating in an activity together you can talk about what we do and you can enjoy the moment together. As seen during workshop 3, both staff and participants from “Aktiviteten” had fun with the activities. Exploring them together and cheering for each other.

Another aspect of doing together is how we can involve others in using the walking route or activities. Symfonien already have a partnership with the school in the neighbourhood. They come to visit once a year for “Naturens dag” (nature day) where they explore plants and animals in the area. This collaboration could be extended and during workshop 2 caretaker Hanne Grønbek (appendix J) talked about inviting the kids to create instruments or other objects that could be hung in the pergola.

One of the other ideas that were discussed as a “creating together”-project was the kitchen garden. What if the neighbourhood was invited to bring a plant or seeds and together we could create the kitchen garden from scratch? This could both create ownership for the kitchen garden from the neighbourhood and make people use it. Even if creating it together the importance of having someone responsible for it was mentioned. Using volunteers was suggested to help care for the garden, but someone responsible for the organization of the volunteers is needed.

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The physical surroundings supporting wayfinding When creating a garden or a walking route for people with dementia it is important to create a place or a path that is easy to “read”. The ability of finding one’s way is something we often take for granted and when this ability is decreasing, for example due to dementia, the ability to read and understand your surroundings is weakened. (Marquardt, 2011) General research has shown that the best way to create walking paths for people with dementia is to design them in loops (Sigbrand et al, 2015). By doing so you can make sure that the person walking will always get back to where they started, being a safety for the person but also for caretakers or relatives. If creating a system with many loops connected, it is important to make sure that the main-walking path is clearly marked, so that one know how to get home (Kramer, 2012). When creating a walking route with different stations or “zones” one should make sure that they have a clear composition and can be read at a glance (Feddersen et al, 2014). The function of each part should also, as mentioned before, be easy to understand.

During workshop 2 and 3 I have created different stations, placed them in different distances from each other. During workshop 3 all exercises was in the same area and it was possible to see them all at one glance. This was proven to work quite well, since one of the women saw the next station and got the whole group to move over to the next exercise. It is though important to have some distance, so that you cannot stay at the same place and experience it all. There should be some challenge in exploring something from a distance and walk towards it.

During the SBI course “Demensvenlige plejeboliger” that I participated in I asked their expert in universal design and availability, Annette Bredmose what she thought a safe walking route for people with dementia could be. I especially wanted to know if there were colours, materials or other things that she thought a person with dementia could follow. Her answer was that she thought the only solution would be to create a walking route inside of a fenced area. This solution would of course be for people in a later stage of dementia and should not be defining for all stages of dementia.

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When visiting Ballerup Plejehjem Torben told me about how they solved the problem with safe/unsafe walks. In their backyard they have created an enclosed sensory garden, which one can only enter from the living room of the nursing home.

But to make sure that the residents get longer walks than that they also arrange walking tours every day with staff, much like what the staff at “Aktiviteten� do.

The outcome of the workshops has shown that the best solution for creating wayfinding for people with dementia is to make it a combination of different ideas.

Some people may have problems with hearing and other with sight; therefore the solution should try to aim for as many senses and aspects of finding ways as possible. One can both use a coloured material for the walking path and create signs for one to follow. The use of different physical landmarks, as stations on the route, can also help guide a person through the walk. By knowing that you have passed two out of three stations can also help you calculate how much further the walk would continue.

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Ownership and sustained participation During a Co-Design project it is crucial to keep a sustained participation, this is one of the three main strategies in the book “Rehearsing the future” (Halse et al, 2010).

To be able to do so, you first need to gain the trust of the stakeholders and to invite them into the project as project owners. This feeling of ownership is the only thing that will provide a sustained participation. If not feeling like you are a part of the project, why bother?

The ones participating in my workshops have all been coming back and I do think that they feel as owners of the project and that their input is important. It has been harder to keep a sustained participation and ownership with the ones not participating in the workshops, for example Sonja Müller, who is one of my main collaborators. She did not have the time to participate in the workshops, which we early on figured out had to be compensated by other meetings to keep her up to date on the process and project.

To make sure that the participants can see that they are an important part of the project I have shown videos from the previous workshop. This was made so that they could see their part in the project and that the new ones could see what we were up to when they could not participate. By doing so the new ones are included into the process and the other participants can see their part in it. Another way of making sure that they know that I listen is by always relating the ideas to what have been said earlier. “As mentioned by you, Vagn, at last workshop…” etc.

The fact that new participants entered the project at every workshop I had to be clear on what the project was about and what they just entered. This helped me keep my focus and helped me to practice my “elevator-pitch” of the project.

Having new people entering during the process can also help preventing that the group get to know each other so well that the workshops and talks turn more into nice chats than into reflective and critical discussions. Of course the sustained participation will always help the process in a way that occasional participation will not. When all participants know what has been discussed and explored before you can easier get further into the project.

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Conclusion This project has been about co-designing a walking route together with people living with dementia, their relatives, caretakers and other staff. When involving people in the project it has been important to build a trust and an ownership to be able to create a sustained participation all through the project. When involving people with dementia it has been of importance to make sure that they do feel as they can manage and that the focus is on their abilities and not their disabilities.

During the project it has been done through experiencing instead of talking. Often talking about a future scenario will end on an abstract level, a level that someone with dementia will not be able to participate in. By staging the future scenarios and together explore them an immediate reaction could be seen and it was clear to see what worked and what did not.

The exploration on what the walking route should contain have ended out with a few important aspects to take into consideration. First of all, the fact that creating a general solution for a group of individuals is not possible. The way to solve this is by working with a gradient of challenge, making sure that there are options for the individual to choose what to experience and how active they want to be. To create something that will work in the context it is important to look at the existing, both the existing built environment, but also the existing structures of the everyday at for example the nursing centre. What are the routines and how do you use the outdoor space today? It is important that the idea is incorporated into the everyday routines for the caretakers and that they feel like it is actually possible to do. By looking at the existing built environment one can also create the best places for rest or activity, by looking at where the activity is today. You can also look at the terrain to see if there are possibilities in incorporating exercises such as walking up the stairs or a hill for example. The existing and the walking route will together work as physical wayfinding, helping people to find their way by navigating from activities or buildings in the area.

As mentioned many times in this project, the way to motivate and inspire is to trigger our senses. It can be done in many ways and by doing so we can evoke memories and start conversations. When talking about conversations one of the most important aspects has to be mentioned, the aspect of being together. It has been mentioned over and over again and we need to make sure that we create place for activities that can be experienced together. It can both be a bench where you can bring your picnic basket and enjoy the view or it could be a game that we can play together. The most important thing is that we plan for those activities, that we create enabling environments.

To make sure that the exercises and the walking route in it self is motivating and inspiring it should contain playful elements. If creating specific exercises they should be seen more as games and there should be elements of this playfulness all

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throughout the route. It will both invite kids to use it and get the rest of us interested in what is going on.

For me, this has been the first co-design project where I have worked alone. I have been the project leader, the facilitator, the researcher and the designer, all in one and it has been challenging but a great learning for me. I now know that I can manage, but that I much rather work together with a team. outcome As written in my program, the outcome and handover to Næstved will be divided into two. The first part is the knowledge gained through the project, with aspects to take into consideration based on both existing research and explorations through workshops. They are shortly presented in this report and will be presented at a meeting in Næstved by the end of June. Based on this knowledge I will also propose a walking route around Symfonien containing the different aspects proven to work well and be important for a walking route for people living with dementia.

This proposal will be the second part of the handover.

My project have been the start to the project on creating “ForgetMeNot” walking routes in Næstved and after the hand over of the project Næstved have different options to work out of. The aspect of addressing the senses in a walking route should of course be incorporated into every part of it, but the knowledge from sensing gardens and other research can be made. What needs to be further researched is how we can incorporate different wayfinding solutions into one, for example the use of physical guidelines (signs and coloured paths) as well as the technical solution. I also think that there is a great potential in looking further into how the “Naturfitness” with a twist could look like. What activities can we place in the neighbourhood to inspire to use by both people living with dementia and others passing by. To remember the playful twist and to make sure that there is a gradient in activity to create a feeling of success for everyone.

Last but not least we shall never forget that the people we are designing for are individuals and that we need to get to know them and their story to fully be able to create something that will inspire and motivate them.

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Bibliography Andersson, Birgitta (2007), “Når hukommelsen svigter, finder livet vej på ny – Agneta Ingberg om sit liv med Alzheimers sygdom”, Frederiksberg, Unitas Forlag Bengtsson, Anna (2015) “From Experiences of the Outdoors to the Design of Healthcare Environments - A Phenomenological Case Study at Nursing Homes” Alnarp, SLU Branco, Rita Maldonado, Quental, Joana and Ribeiro, Óscar (2015)“I’m always well when we are together: Observation of institutional activities with people with dementia and its implications for a co-design research project” Design 4 Health 2015, European Conference Chalfont, Garuth Eliot (2005) “Creating enabling outdoor environments for residents” Nursing & Residential Care, October 2005, Vol 7, No 10 Clare Cooper Marcus, Naomi A. Sachs (2014) “Therapeutic Landscapes: An evidencebased approach to designing healing gardens and restorative outdoor spaces”, Hoboken, New Jersey, John Wiley & Sons: Demensalliancen, 2015. “Aldrig alene med demens” Feddersen, Eckhard & Lüdtke, Insa (eds.) (2014) “ Architecture and dementia – lost in space” Basel; Birkhäuser Halse, Clark, Brandt, Binder. (2010)”Rehearsing the future”, Copenhagen: The Danish Design School Press Hartig ,Terry & Marcus, Clare Cooper (2006) “Healing Gardens – places for nature in healthcare” Uppsala: Institute for Housing and Urban Research Kitwood, Tom (1999) “En revurdering af demens – personen kommer i første række” København, Munksgaard Kramer, Ulla (2012), “Udearealer for alle – sådan planlægges et tilgængeligt udemiljø” Charlottenlund; Forlaget Dansk Standard Kronqvist, Juha, Erving, Heini & Leinonen, Teemu (2013) “Cardboard Hospital prototyp- ing patient-centric environments and services” Copenhagen-Malmö: Nordic Design Research Conference 2013 Marquardt, Gesine (2011) “Wayfinding for People With Dementia: The Role of Architectural Design” Health Environments Research & Design Journal

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Marquardt, Gesine & Schmieg, Peter (2009) “Dementia-Friendly Architecture: Environments That Facilitate Wayfinding in Nursing Homes” American Journal of Alzheimer’s Disease & Other Dementias Nevstrup Anderssen, Lise (2009) “Naturen stimulerer aktivitetsudførelse”, Ergoterapeuten,July 2009 Næstved Kommune, (2015) “Demensvenlig Aktionsplan” Preece J, Rogers Y and Sharp H (2002) “Interaction Design – beyond human-computer interaction.” John Wiley & Sons, Inc. Sheehan, Bart, Burton, Elisabeth & Mitchell, Lynne (2006) ”Outdoor wayfinding in dementia”, Sage Publication; Dementia VOL 5(2) 271–281 Sigbrand Lone & Bredmose, Annette & Kirkeby, Inge Mette & Mathiasen, Nanet & Jensen, Philip Henrik ( 2015) “Plejeboliger for personer med demens – indledende spørgsmål. SBI-ansvisning 259”, København; Statens Byggeforsknings Institut Aalborg Universitet Verderber, Stephen (2010) ”Innovations in Hospital Architecture”, New York: Routledge WEB www.alz.org www.alzheimer.dk www.demensalliancen.dk www.naestved.dk www.videnscenterfordemens.dk (http://www.videnscenterfordemens.dk/forskning/forskningsnyheder/2015/05/fysisk-traening-mindsker-symptomer-vedalzheimer/)

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appendix (USB) Meetings/Visits

Inge Selch & Karen Lennert - Appendix A Sonja Müller - Appendix B Grith Andersen & Camilla Engbo Jonassen - Appendix C Mette Pittelkow & Karin Monssen - Appendix D Physiotherapists Symfonien - Appendix E Anna Bengtsson, Alnarp Rehab Garden - Appendix F Vagn Vestergaard - Appendix G Alexandre Alapetite, ITU - Appendix H Worokshop 1 - Appendix I Workshop 2 - Appendix J Workshop 3 - Appendix K

video

Existing walking routes around Symfonien Bustour “Aktiviteten” Biketour “Cykling Uden Alder” Workshop 1 Workshop 2

other

Project Program - PDF Designexplorations - PDF

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The Royal Danish Academy of Fine Arts, Schools of Architecture, Design and Cons

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