Journal of Urban Design and Mental Health; 2021:7;4
ANALYSIS
Wayfinding and Urban Design From the Perspective of People Living With Dementia – A Call for Participatory Research
Helga Rohra(1,2), Jim Mann (1,3), Mike Rommerskirch-Manietta (4,5), Martina Roes (4,5), and Saskia Kuliga*(4,5)
1 International Dementia Advocates, shared first authorship
2 German Center for Neurodegenerative Diseases (DZNE), Patient Council, Bonn, Germany
3 University of British Columbia, Co-Investigator in the research project ‘Putting Social Citizenship into Practice: Improving the Lives of People with Dementia’, Vancouver, Canada
4 German Center for Neurodegenerative Diseases (DZNE), Witten Site, Witten, Germany
5 University of Witten/Herdecke, Faculty of Health, Department of Nursing Science, Witten, Germany
* Corresponding author [email protected]
1 International Dementia Advocates, shared first authorship
2 German Center for Neurodegenerative Diseases (DZNE), Patient Council, Bonn, Germany
3 University of British Columbia, Co-Investigator in the research project ‘Putting Social Citizenship into Practice: Improving the Lives of People with Dementia’, Vancouver, Canada
4 German Center for Neurodegenerative Diseases (DZNE), Witten Site, Witten, Germany
5 University of Witten/Herdecke, Faculty of Health, Department of Nursing Science, Witten, Germany
* Corresponding author [email protected]
Citation: Rohra H, Mann J, Rommerskirch-Manietta M, Roes M, Kuliga S. (2021). Wayfinding and urban design from the perspective of people living with dementia - A call for participatory research. Journal of Urban Design and Mental Health 7;4
Abstract
In this perspective paper and ‘hearing the voice’ effort, two internationally recognized dementia advocates who are living with dementia, and three interdisciplinary researchers from the fields of environmental psychology, nursing science, and sociology, co-author their discussion and perspectives on: (1) why it is important to include the perspective of people living with dementia in research, and (2) how the inclusion and participation of people living with dementia in research could take form. We engaged in semi-structured interviews, and then co-authored this perspective paper in iterative discussions via phone/online calls and e-mails. The article has two parts: (1) we discuss ways for participatory research that includes people living with dementia as experts on their lived experience; and (2) we explore wayfinding in urban environments as practical example that we identified as relevant when discussing dementia-sensitive environments. We conclude that co-research and perspective-taking are crucial for researchers and practitioners who tackle mental health in cities, such as the development of dementia-sensitive urban environments.
Introduction
Worldwide, societies are rapidly ageing, and there are increasing numbers of people living with dementia (Alzheimer’s Disease International, 2015; United Nations, 2019). In order to respond to these demographic transitions, international efforts call for optimizing the built and social environment (e.g., Fleming et al., 2020; World Health Organization, 2017).
Such efforts also emphasize the importance of sustaining mental health and social inclusion in cities, understanding environmental stressors, and fostering mobility and walking activities (e.g., Camargo et al., 2018; Gillespie et al., 2017; Rodriguez et al., 2021). Yet, when discussing, planning, or making decisions about the built and social environment, research projects or urban design projects that include the perspective of people living with dementia still remain scarce (Kuliga et al., 2021; Swaffer, 2014).
As various international dementia activists and groups call for ‘nothing about us without us’ (Alzheimer Europe, 2013), there is an ongoing notable shift in the international research agenda: from research about to research with people living with dementia (e.g., Bryden, 2015; Mann, 2020; O'Connor et al., 2020; Seetharaman et al., 2020; Thoft et al., 2020).
Including people living with dementia in all stages of the research process can positively influence study designs, change attitudes on both sides, and help uncover novel aspects that researchers had not considered before (Nunn et al., 2021). One of the reasons is that a mutual understanding and perspective-taking might decrease experienced stigmatization (O'Connor et al., 2020); and, by recognizing people living with dementia as partners, might improve the quality of research outcomes (Nunn et al., 2021). On the long-term, this can positively inform the development of interventions or designs that directly affect people living with dementia.
Despite the existence of various stigma, challenges, and barriers (Brannelly, 2016; Hubbard et al., 2003; Novek & Wilkinson, 2019; O'Connor et al., 2018; Swaffer, 2014; Zimmermann, 2017), many people living with dementia are interested and able to share their perspective (e.g., Bryden, 2005, 2015; Mann & Hung, 2018; McKillop & Wilkinson, 2016; O'Connor et al., 2020; Rohra, 2013; Taylor, 2009). This is particularly important to consider, as people living with dementia are experts on their lived experience and how to cope with the disease in everyday life (Thoft et al., 2021).
One aspect of everyday life is orienting and finding the way. Wayfinding is a complex human-environment interaction and involves stages of self-orienting, identifying routes, monitoring routes, and identifying the destination upon arrival (Carlson et al., 2010; Golledge, 1992; Kuliga et al., 2019; Montello, 2014). While wayfinding can be a challenge across all demographics, due to neurodegeneration connected to the disease, orientation and wayfinding challenges can particularly occur in Dementia of the Alzheimer Type, and in already early stages of the disease (Cherrier et al., 2001; Davis & Sikorskii, 2020; Pai & Jacobs, 2004; Passini et al., 2016; Sheehan et al., 2006).
Spatial disorientation is often linked to discomfort, insecurity, or anxiety (Chiu et al., 2004; Olsson et al., 2019), and experiencing suboptimal environments can be linked to avoidance behavior (Fogel, 1992). For instance, some people living with dementia may move within gradually smaller areas or may stop going out (Duggan et al., 2008). In order to meet wayfinding and spatial orientation challenges with new scientific concepts, it is crucial for researchers and practitioners to include people living with dementia, as experts on their lived experience (Gan et al., 2021; Kuliga et al., 2021).
Such efforts also emphasize the importance of sustaining mental health and social inclusion in cities, understanding environmental stressors, and fostering mobility and walking activities (e.g., Camargo et al., 2018; Gillespie et al., 2017; Rodriguez et al., 2021). Yet, when discussing, planning, or making decisions about the built and social environment, research projects or urban design projects that include the perspective of people living with dementia still remain scarce (Kuliga et al., 2021; Swaffer, 2014).
As various international dementia activists and groups call for ‘nothing about us without us’ (Alzheimer Europe, 2013), there is an ongoing notable shift in the international research agenda: from research about to research with people living with dementia (e.g., Bryden, 2015; Mann, 2020; O'Connor et al., 2020; Seetharaman et al., 2020; Thoft et al., 2020).
Including people living with dementia in all stages of the research process can positively influence study designs, change attitudes on both sides, and help uncover novel aspects that researchers had not considered before (Nunn et al., 2021). One of the reasons is that a mutual understanding and perspective-taking might decrease experienced stigmatization (O'Connor et al., 2020); and, by recognizing people living with dementia as partners, might improve the quality of research outcomes (Nunn et al., 2021). On the long-term, this can positively inform the development of interventions or designs that directly affect people living with dementia.
Despite the existence of various stigma, challenges, and barriers (Brannelly, 2016; Hubbard et al., 2003; Novek & Wilkinson, 2019; O'Connor et al., 2018; Swaffer, 2014; Zimmermann, 2017), many people living with dementia are interested and able to share their perspective (e.g., Bryden, 2005, 2015; Mann & Hung, 2018; McKillop & Wilkinson, 2016; O'Connor et al., 2020; Rohra, 2013; Taylor, 2009). This is particularly important to consider, as people living with dementia are experts on their lived experience and how to cope with the disease in everyday life (Thoft et al., 2021).
One aspect of everyday life is orienting and finding the way. Wayfinding is a complex human-environment interaction and involves stages of self-orienting, identifying routes, monitoring routes, and identifying the destination upon arrival (Carlson et al., 2010; Golledge, 1992; Kuliga et al., 2019; Montello, 2014). While wayfinding can be a challenge across all demographics, due to neurodegeneration connected to the disease, orientation and wayfinding challenges can particularly occur in Dementia of the Alzheimer Type, and in already early stages of the disease (Cherrier et al., 2001; Davis & Sikorskii, 2020; Pai & Jacobs, 2004; Passini et al., 2016; Sheehan et al., 2006).
Spatial disorientation is often linked to discomfort, insecurity, or anxiety (Chiu et al., 2004; Olsson et al., 2019), and experiencing suboptimal environments can be linked to avoidance behavior (Fogel, 1992). For instance, some people living with dementia may move within gradually smaller areas or may stop going out (Duggan et al., 2008). In order to meet wayfinding and spatial orientation challenges with new scientific concepts, it is crucial for researchers and practitioners to include people living with dementia, as experts on their lived experience (Gan et al., 2021; Kuliga et al., 2021).
Aims and scope
In this perspective paper, two internationally recognized dementia advocates and three researchers from the fields of environmental psychology, nursing science, and sociology co-author their discussions, on: (1) why it is important to include the perspective of people living with dementia in research (Part 1: sharing insights on lived experience); and (2) how the inclusion and participation of people living with dementia in research could take form (Part 2: sharing insights on wayfinding and urban design).
We expect to reach various stakeholders who are developing urban environments, and illustrate the needs and benefits of incorporating dementia-sensitive design. Stakeholders include urban designers (e.g., who focus on the experiences of the users of space by creating the characteristics of an urban environment), urban planners (e.g., who focus on policy, politics, infrastructures, regulations, codes, etc.), architects (e.g., who focus on creating user-centered buildings in cities, considering also wayfinding design), and researchers who study human-environment interactions.
Throughout this perspective paper, our underlying position will be that people living with dementia are experts on their lived experience and how to cope with the disease in everyday life. With this ‘hearing the voice’ effort, we seek to inspire further debates about the inclusion of people living with dementia as experts in research, and, in particular, when discussing dementia-sensitive built and social environments. Thus, the article is both a call for participatory research and practice, and also a demonstration of discussing built space together with people living with dementia.
We expect to reach various stakeholders who are developing urban environments, and illustrate the needs and benefits of incorporating dementia-sensitive design. Stakeholders include urban designers (e.g., who focus on the experiences of the users of space by creating the characteristics of an urban environment), urban planners (e.g., who focus on policy, politics, infrastructures, regulations, codes, etc.), architects (e.g., who focus on creating user-centered buildings in cities, considering also wayfinding design), and researchers who study human-environment interactions.
Throughout this perspective paper, our underlying position will be that people living with dementia are experts on their lived experience and how to cope with the disease in everyday life. With this ‘hearing the voice’ effort, we seek to inspire further debates about the inclusion of people living with dementia as experts in research, and, in particular, when discussing dementia-sensitive built and social environments. Thus, the article is both a call for participatory research and practice, and also a demonstration of discussing built space together with people living with dementia.
Co-Authoring Process
In this article, the perspective and voice of people living with dementia is represented by two internationally recognized dementia advocates. The first author, Helga Rohra (Germany), lives with Lewy-Body-Dementia since 2010 (when she was diagnosed in her early fifties), and with Dementia of the Alzheimer Type since 2019. The second author, Jim Mann (Canada) lives with Dementia of the Alzheimer Type since 2007.
The idea of co-authoring this article together was initially proposed by Helga Rohra, after she and the last author had discussed aspects of dementia-sensitive, wayfinding-supportive urban environments during an application for research funding. She shared her expertise in discussing the need for including people living with dementia in research. Upon searching for journals, we found that the UD/MH journal’s call for papers specifically asked for input by people living with dementia. The journal’s editors suggested to reach out to Jim Mann, who then joined our team. He shared his expertise on research projects that already include people living with dementia, e.g., in action groups or as co-investigators.
Being engaged in international Alzheimer societies, committees, media, research, and patient and public involvement initiatives, the first two authors have extensive experience with the diverse perspectives, needs, and aspirations of people living with different forms and stages of dementia. In addition, Helga Rohra is a member of the DZNE Patient Council (German Center for Neurodegenerative Diseases Germany, 2021); and Jim Mann is co-investigator at the University of British Columbia (Centre for Research on Personhood in Dementia, n.d.). Both volunteer their time to advocate living positively with dementia, reducing stigma and stereotypes, and including people living with dementia in research.
We discussed the article’s topics together via semi-structured interviews, e-mails and/or conversational phone/online calls. For the interviews, the last author developed a semi-structured interview guideline with questions that were open for adding new topics. The first and second author each engaged with the last author in 1:1 interviews, which informed Part 1 and Part 2. All other sections are based on follow-up discussions via phone/online calls and e-mails between the first two authors and the last author.
We transcribed the audio data (two 45-min interviews; one 1.5-h interview); and took notes of our e-mail and phone discussions. The last three authors supported the shared aim of co-authoring this article together. We agreed that the last author would write a first draft of the manuscript based on the transcripts and notes –staying as close as possible to the transcripts– and then together prepared this manuscript for the first submission. In an iterative discussion, we continued working on the paper until we reached an agreement for the final submission.
The idea of co-authoring this article together was initially proposed by Helga Rohra, after she and the last author had discussed aspects of dementia-sensitive, wayfinding-supportive urban environments during an application for research funding. She shared her expertise in discussing the need for including people living with dementia in research. Upon searching for journals, we found that the UD/MH journal’s call for papers specifically asked for input by people living with dementia. The journal’s editors suggested to reach out to Jim Mann, who then joined our team. He shared his expertise on research projects that already include people living with dementia, e.g., in action groups or as co-investigators.
Being engaged in international Alzheimer societies, committees, media, research, and patient and public involvement initiatives, the first two authors have extensive experience with the diverse perspectives, needs, and aspirations of people living with different forms and stages of dementia. In addition, Helga Rohra is a member of the DZNE Patient Council (German Center for Neurodegenerative Diseases Germany, 2021); and Jim Mann is co-investigator at the University of British Columbia (Centre for Research on Personhood in Dementia, n.d.). Both volunteer their time to advocate living positively with dementia, reducing stigma and stereotypes, and including people living with dementia in research.
We discussed the article’s topics together via semi-structured interviews, e-mails and/or conversational phone/online calls. For the interviews, the last author developed a semi-structured interview guideline with questions that were open for adding new topics. The first and second author each engaged with the last author in 1:1 interviews, which informed Part 1 and Part 2. All other sections are based on follow-up discussions via phone/online calls and e-mails between the first two authors and the last author.
We transcribed the audio data (two 45-min interviews; one 1.5-h interview); and took notes of our e-mail and phone discussions. The last three authors supported the shared aim of co-authoring this article together. We agreed that the last author would write a first draft of the manuscript based on the transcripts and notes –staying as close as possible to the transcripts– and then together prepared this manuscript for the first submission. In an iterative discussion, we continued working on the paper until we reached an agreement for the final submission.
Article structure
By choice, this work is a perspective paper and thus deviates from other research article formats. For the main body of the paper (Part 1 and Part 2), we chose to exclude references to the academic literature, and focus solely on the perspective and voice of people living with dementia. Here, Part 1 discusses ways for including people living with dementia in research projects, and Part 2 demonstrates involvement by discussing wayfinding and urban design. Since we chose a conversational process, the co-authoring process was comparable to a journalistic approach. Thus, for the main body of the paper, we thematically sorted the materials and paraphrased them into one voice, represented by an active writing style (‘I’, ‘we’).
Part 1: Sharing Insights on Lived Experience
Identifying why participatory research is important
For me, who lives with dementia, it is important to make our voice known. We would like to be included in all aspects that refer to our life. If something is designed for people living with dementia, then we are the ones who know best what we need. Therefore, it is important for me to encourage positive research projects or innovative urban design projects that address the voice and the perspective of people living with dementia.
Partnering with people living with dementia will be a mutual benefit for all those participating. We can also contact our dementia network to find more people who can give feedback. There are many people living with dementia who are able and motivated to provide feedback, e.g., on the characteristics of dementia-sensitive environments. Thus, researchers and practitioners could simply ask us. Until we get to a final stage in our dementia journey, we are interested and able to share our lived experience and our perspective.
Yet, in some countries, inclusion and participation currently are not at the top of the political or research agenda. For instance, while we have high social standards, some countries may have strict legal impediments that can make it challenging for researchers to reach out to people living with dementia for participatory research projects. However, as more and more people are getting diagnosed, and many of them are younger, we need to consider the ongoing societal transitions, and adapt our built and social environments accordingly.
In my view as a person living with dementia, it is a necessity for stakeholders involved in the future planning and design of our cities and buildings, to include us. Yet, when planning dementia-sensitive built and social environments, or developing care facilities for people living with dementia, we are currently not consulted. But I can review plans with a critical eye. For instance, I can provide feedback about the floor plan layout, colors, illumination, staircases, and other aspects that refer to my well-being and living in dignity (see Part 2).
Identifying where change towards participation might need to happen
Regarding the social environment, I feel that we need to inform people about our lived experience and perspective, so that stigmatization will be reduced, and the many faces of dementia and their stories become visible. For instance, to reach the people in our societies, we need to engage in a dialogue straight from the heart to the heart.
Regarding the built environment, I feel that architects, urban designers, and urban planners could include our perspective; e.g., by inviting us to a workshop or dialogue, discussing their environmental plans, and listening to our feedback. I suggest the discussions and outcomes would be –not only beneficial but also– enlightening. Furthermore, it is important to note that some people living with dementia may have been architects, urban designers, and urban planners themselves in their life before the disease, and they still know a lot about planning. Naturally, I have to note that not all people living with dementia are equally active. Yet, with empowerment, capacity-building, trust- and team-building efforts, they might be more and more active in the future.
Regarding the question how to motivate people living with dementia to participate in research, it is important to note that –besides the existing stigma that can represent barriers– people living with dementia often do not want to self-identify publicly, because getting a diagnosis can strongly affect someone’s self-confidence. For this reason, we, as dementia advocates, seek to be visible. We are engaged in various international committees and boards; as keynote speakers; as research participants, advisors, facilitators, or co-investigators; and as authors of social media, books, and research articles. By showing ourselves being active openly, in many ways, we seek to encourage other people living with dementia to get a little bit more confident: “if they can do it, I can do it.” It is that visibility that encourages others to regain the self-confidence that there is more to living with dementia than meets the eye.
Regarding the participation of people living with dementia in research: we think it is warranted to be included in all stages of a research project. To do so, during the research project, researchers might need to reflect on their roles, communication, methodologies, relations, and other aspects – and this certainly means relinquishing some control. At the end of a research project, we might envision presenting the research projects together, e.g., at a conference, to reinforce its validity and the importance of meaningful engagement of people living with dementia.
Regarding the participatory research process, we feel that researchers might also think about connecting across borders, working interdisciplinary, and making their insights more openly accessible in order to learn from each other. Also, a researcher running such a participatory research project not only needs to be interested in the topic of inclusion for their career or for a particular research project, but they need to have passion. To instill change in society is an ethical responsibility that takes time and effort, for which passion is essential.
Identifying forms of participatory research project
Which format for including people living with dementia in research one chooses, i.e., whether it is an advisory board, an action group, or co-research, all depends on the particular research project. The researchers might come to us with presentations, but in order for us to adequately respond and provide our own comments and input, preparatory work is needed. For example, the presentation should be sent one week before the meeting, thus ensuring meaningful dialogue during the presentation.
For establishing an action group, for example, researchers may start with a few people, and after a year or so, they may have established an action group of about ten people, who trust each other and collaborate well together. In my experience, the composition of an action group advising the various researchers matters: in some research projects, it may be a group with only people living with dementia without care partners; and in others, it may be best to invite a heterogeneous group with family caregivers, care professionals, and people living with dementia.
Facilitation of the action group, like in any participatory research project, is important: it is a matter of ensuring the focus is, and remains, on moving forward. If the action group does not have a facilitation, a conversation could end-up in ten different ways. Furthermore, a facilitator can moderate group processes, and ensure that all voices are being heard. Thus, facilitation is a matter of ensuring that the action group reaches the end point that the action group has actually determined together. Without facilitation, the group may lose focus and will not reach the end point.
Also, if a dementia advocate is the facilitator and inserts a personal reflection on the topic the action group talks about, it can encourage conversation. On the contrary, if it were just one or two researchers engaging in the facilitation, without that lived experience, I believe the discussion in the action group would not necessarily be as fruitful.
For instance, researchers may have a certain, what I call, ‘research-speak.’ Thus, particular words researchers use may not have meaning for us. Hence, one part of the research is realizing that words matter, and have meaning, especially in dementia research. For instance, we do not like the notion that a person with dementia ‘suffers.’ It is important to see the person and not the disease. Also, the language does not need to be overly simple, because that may feel childish for us, but it has to be clear spoken, sometimes repeated, and appreciative. Moreover, the formal research project title the researchers selected may not be well understood or meaningful for people living with dementia: in that case, it is important that the action group, together, discusses and agrees on a plain language title that has meaning and understanding for members.
Moreover, in the case where a person living with dementia is co-leading the research project, as co-investigator, for example, the team will typically run into the need for affiliations, e.g., when writing a research article or applying for funding. The technicalities are really fascinating. For instance, my affiliation cannot be that I have Alzheimer’s, and that I am an expert on the lived experience of people with Alzheimer’s. Similarly, when co-authoring a research article, most academic journals would not accept being a dementia advocate as affiliation. Even if in practice, my tasks would be those of a co-investigator, e.g., being engaged in decision-making, without that affiliation, I cannot officially be a co-investigator.
In sum, which format to choose for including people living with dementia in research depends on the particular research project. All of them will take time and effort to prepare and to establish with an expected value added feature. In each case, partnering or collaborating with people living with dementia means that you will build up a relation, and that brings along many responsibilities, including ethical considerations.
Identifying insights for researchers
Although the ongoing debate on how to measure the impact of citizen researchers’ involvement is still not clear in the academic literature, the inclusion and participation of people living with dementia in research often provide a new perspective, by a close and direct contact with people living with dementia and their lived experience.
To me, this is so important: people around me may understand Alzheimer’s disease, but they will not know what it is like to live with Alzheimer’s 24/7, because they do not have a diagnosis of Alzheimer’s. And that, to me, is a huge difference.
For us who are living with dementia, it also becomes a matter of acknowledging, and giving the researcher license to sometimes go into uncharted territory. Sometimes what we will contribute to the researchers will be like a wow/aha moment they did not prepare for. For instance, researchers may have an academic meaning of lived experience, whereas I or an action group may have a whole different perspective of those same words.
In that sense, it is also a challenge to the researcher to relinquish a level of control. The researchers wrote the proposal, acquired the research funding, are experts in research who know their field, and how they are going to do the research. Some researchers may hence not see a benefit of including people living with dementia; perhaps also because of a subconscious or implicit bias. That is part of a learning process for a researcher: if they are going to involve people living with dementia, then they have to, as I said, relinquish a bit of control. There is a journey involved.
In sum, from my perspective, many people living with dementia are able and interested to participate in research. Yet, next to ensuring ethical considerations and protection, manners of adjusting the research language, and facilitation, there is not a one-size-fits-all format of ‘how’ to include people living with dementia – it is all very project-specific. Independent of the chosen format for including people living with dementia, it is important that we are valued, and not just a tick in the box. We think that meaningful engagement acknowledges and values the person with dementia and the opinion of the person with dementia.
For me, who lives with dementia, it is important to make our voice known. We would like to be included in all aspects that refer to our life. If something is designed for people living with dementia, then we are the ones who know best what we need. Therefore, it is important for me to encourage positive research projects or innovative urban design projects that address the voice and the perspective of people living with dementia.
Partnering with people living with dementia will be a mutual benefit for all those participating. We can also contact our dementia network to find more people who can give feedback. There are many people living with dementia who are able and motivated to provide feedback, e.g., on the characteristics of dementia-sensitive environments. Thus, researchers and practitioners could simply ask us. Until we get to a final stage in our dementia journey, we are interested and able to share our lived experience and our perspective.
Yet, in some countries, inclusion and participation currently are not at the top of the political or research agenda. For instance, while we have high social standards, some countries may have strict legal impediments that can make it challenging for researchers to reach out to people living with dementia for participatory research projects. However, as more and more people are getting diagnosed, and many of them are younger, we need to consider the ongoing societal transitions, and adapt our built and social environments accordingly.
In my view as a person living with dementia, it is a necessity for stakeholders involved in the future planning and design of our cities and buildings, to include us. Yet, when planning dementia-sensitive built and social environments, or developing care facilities for people living with dementia, we are currently not consulted. But I can review plans with a critical eye. For instance, I can provide feedback about the floor plan layout, colors, illumination, staircases, and other aspects that refer to my well-being and living in dignity (see Part 2).
Identifying where change towards participation might need to happen
Regarding the social environment, I feel that we need to inform people about our lived experience and perspective, so that stigmatization will be reduced, and the many faces of dementia and their stories become visible. For instance, to reach the people in our societies, we need to engage in a dialogue straight from the heart to the heart.
Regarding the built environment, I feel that architects, urban designers, and urban planners could include our perspective; e.g., by inviting us to a workshop or dialogue, discussing their environmental plans, and listening to our feedback. I suggest the discussions and outcomes would be –not only beneficial but also– enlightening. Furthermore, it is important to note that some people living with dementia may have been architects, urban designers, and urban planners themselves in their life before the disease, and they still know a lot about planning. Naturally, I have to note that not all people living with dementia are equally active. Yet, with empowerment, capacity-building, trust- and team-building efforts, they might be more and more active in the future.
Regarding the question how to motivate people living with dementia to participate in research, it is important to note that –besides the existing stigma that can represent barriers– people living with dementia often do not want to self-identify publicly, because getting a diagnosis can strongly affect someone’s self-confidence. For this reason, we, as dementia advocates, seek to be visible. We are engaged in various international committees and boards; as keynote speakers; as research participants, advisors, facilitators, or co-investigators; and as authors of social media, books, and research articles. By showing ourselves being active openly, in many ways, we seek to encourage other people living with dementia to get a little bit more confident: “if they can do it, I can do it.” It is that visibility that encourages others to regain the self-confidence that there is more to living with dementia than meets the eye.
Regarding the participation of people living with dementia in research: we think it is warranted to be included in all stages of a research project. To do so, during the research project, researchers might need to reflect on their roles, communication, methodologies, relations, and other aspects – and this certainly means relinquishing some control. At the end of a research project, we might envision presenting the research projects together, e.g., at a conference, to reinforce its validity and the importance of meaningful engagement of people living with dementia.
Regarding the participatory research process, we feel that researchers might also think about connecting across borders, working interdisciplinary, and making their insights more openly accessible in order to learn from each other. Also, a researcher running such a participatory research project not only needs to be interested in the topic of inclusion for their career or for a particular research project, but they need to have passion. To instill change in society is an ethical responsibility that takes time and effort, for which passion is essential.
Identifying forms of participatory research project
Which format for including people living with dementia in research one chooses, i.e., whether it is an advisory board, an action group, or co-research, all depends on the particular research project. The researchers might come to us with presentations, but in order for us to adequately respond and provide our own comments and input, preparatory work is needed. For example, the presentation should be sent one week before the meeting, thus ensuring meaningful dialogue during the presentation.
For establishing an action group, for example, researchers may start with a few people, and after a year or so, they may have established an action group of about ten people, who trust each other and collaborate well together. In my experience, the composition of an action group advising the various researchers matters: in some research projects, it may be a group with only people living with dementia without care partners; and in others, it may be best to invite a heterogeneous group with family caregivers, care professionals, and people living with dementia.
Facilitation of the action group, like in any participatory research project, is important: it is a matter of ensuring the focus is, and remains, on moving forward. If the action group does not have a facilitation, a conversation could end-up in ten different ways. Furthermore, a facilitator can moderate group processes, and ensure that all voices are being heard. Thus, facilitation is a matter of ensuring that the action group reaches the end point that the action group has actually determined together. Without facilitation, the group may lose focus and will not reach the end point.
Also, if a dementia advocate is the facilitator and inserts a personal reflection on the topic the action group talks about, it can encourage conversation. On the contrary, if it were just one or two researchers engaging in the facilitation, without that lived experience, I believe the discussion in the action group would not necessarily be as fruitful.
For instance, researchers may have a certain, what I call, ‘research-speak.’ Thus, particular words researchers use may not have meaning for us. Hence, one part of the research is realizing that words matter, and have meaning, especially in dementia research. For instance, we do not like the notion that a person with dementia ‘suffers.’ It is important to see the person and not the disease. Also, the language does not need to be overly simple, because that may feel childish for us, but it has to be clear spoken, sometimes repeated, and appreciative. Moreover, the formal research project title the researchers selected may not be well understood or meaningful for people living with dementia: in that case, it is important that the action group, together, discusses and agrees on a plain language title that has meaning and understanding for members.
Moreover, in the case where a person living with dementia is co-leading the research project, as co-investigator, for example, the team will typically run into the need for affiliations, e.g., when writing a research article or applying for funding. The technicalities are really fascinating. For instance, my affiliation cannot be that I have Alzheimer’s, and that I am an expert on the lived experience of people with Alzheimer’s. Similarly, when co-authoring a research article, most academic journals would not accept being a dementia advocate as affiliation. Even if in practice, my tasks would be those of a co-investigator, e.g., being engaged in decision-making, without that affiliation, I cannot officially be a co-investigator.
In sum, which format to choose for including people living with dementia in research depends on the particular research project. All of them will take time and effort to prepare and to establish with an expected value added feature. In each case, partnering or collaborating with people living with dementia means that you will build up a relation, and that brings along many responsibilities, including ethical considerations.
Identifying insights for researchers
Although the ongoing debate on how to measure the impact of citizen researchers’ involvement is still not clear in the academic literature, the inclusion and participation of people living with dementia in research often provide a new perspective, by a close and direct contact with people living with dementia and their lived experience.
To me, this is so important: people around me may understand Alzheimer’s disease, but they will not know what it is like to live with Alzheimer’s 24/7, because they do not have a diagnosis of Alzheimer’s. And that, to me, is a huge difference.
For us who are living with dementia, it also becomes a matter of acknowledging, and giving the researcher license to sometimes go into uncharted territory. Sometimes what we will contribute to the researchers will be like a wow/aha moment they did not prepare for. For instance, researchers may have an academic meaning of lived experience, whereas I or an action group may have a whole different perspective of those same words.
In that sense, it is also a challenge to the researcher to relinquish a level of control. The researchers wrote the proposal, acquired the research funding, are experts in research who know their field, and how they are going to do the research. Some researchers may hence not see a benefit of including people living with dementia; perhaps also because of a subconscious or implicit bias. That is part of a learning process for a researcher: if they are going to involve people living with dementia, then they have to, as I said, relinquish a bit of control. There is a journey involved.
In sum, from my perspective, many people living with dementia are able and interested to participate in research. Yet, next to ensuring ethical considerations and protection, manners of adjusting the research language, and facilitation, there is not a one-size-fits-all format of ‘how’ to include people living with dementia – it is all very project-specific. Independent of the chosen format for including people living with dementia, it is important that we are valued, and not just a tick in the box. We think that meaningful engagement acknowledges and values the person with dementia and the opinion of the person with dementia.
Part 2 – Sharing Insights on Wayfinding and Urban Design
Identifying why dementia-sensitive environments are important
For me, who lives with dementia, mobility and wayfinding in the urban environment are important aspects of social inclusion, because my independence is an important aspect for my quality of life. Independence means that I can access public spaces when I want to, without support by others, and that I can participate in social life. But, because of my progressive disease and its effects on my spatial abilities, spatial disorientation may occur – everywhere: in both indoor and outdoor environments, underground or above the ground.
Spatial orientation and wayfinding challenges can occur unexpectedly and frighten me. To give the reader an example, it can happen that, in my own familiar district, I cannot find my way back to where I am living; or, while going for a walk, I may have trouble self-localizing where I am, why I am there, and where I am heading to. Disorientation increases my anxiety. For this reason, I tend to take the same routes, and I avoid places that feel confusing for me.
It is important to note that, for me, the term ‘environment’ does not only have a physical aspect (e.g., the architecture, the arrangement of the buildings in the urban environment, the building heights, traffic, signage, soundscapes, illumination) but also a social aspect (e.g., society, community, living place).
As such, I define the concept of a ‘supportive environment’ as: (1) a supportive surrounding (e.g., buildings in certain arrangements, wayfinding support, urban design, as well as (2) supportive people (e.g., trained people who are positioned at certain decision points where people –and I do not only mean people living with dementia– are known to get disoriented or lost).
Identifying Where Changes in Urban Environments Might Need to Happen
For me, on the street level, wayfinding challenges can arise from an interplay of factors; e.g., (1) sensory and cognitive challenges due to the neurodegeneration; (2) environmental-, architectural-, and urban design characteristics; and (3) dynamically changing environmental characteristics, such as changing soundscapes, traffic, or illumination.
Especially construction sites can be challenging for me, because they block visual accessibility, or may look entirely different than I remember – and then, suddenly, everything is new for me. Crowded places and traffic are both challenging, because of the sound. I have to be careful when crossing a street as I may not note a car coming. It is a real problem for me.
I can also imagine that –in districts where people living with dementia and diverse other people who may find certain urban design aspects challenging live– the city could place trained people who could support us. These people could wear clothes that make them recognizable, so I know whom to ask for route instructions. My care partner might also be less nervous when they know that there are trained people who could support me.
Although the stigma exists that I am not able to read because of my dementia, I can say that reading is a function that lasts very long. As a result of this long-lasting ability, simple signage is another important aspect for me in the context of wayfinding. For signage, it matters how something is written, for instance, the type of letters or colors. Street signs could be made more salient by illuminating them, or by using colors that are the same in all cities of a country.
For instance, on airports, a twenty-minute walk can be easy when signs are placed repeatedly, highly visible, and when they follow universal design guidelines. Yet, that does not translate to urban design and streets directly: for instance, urban designers could mark certain routes on a sidewalk, but how does anybody know where you are going, or how to direct you when you are out for a walk, where, at any time, disorientation may occur?
Identifying strategies to feel navigationally-confident
I am, for example, more confident navigating my own district, and always take the same route. I tend to follow landmarks I have learnt, especially if these are placed repeatedly, like pillars I can follow. For example, on the way home, a specific birch tree can represent a cue for me to turn into the street where I live in. Yet, if the tree is being cut down, the cue is lost. Overall, a visible cue can turn in an emotional one, and an emotional one is even easier for me to remember because I make a connection to it.
Another strategy is asking other people for route instructions, and repeatedly along the way, until I recognize a familiar aspect of space. While I do not accept help from everyone, I find route instructions from strangers challenging to keep in mind; especially if they rapidly point out a list of left and right turns.
Some cities have also placed Talking Signs along the way, with a map that indicates my current location. They are based on verbal interaction: for instance, I could ask for the way, and the device would then offer route instructions. However, a challenge with such Talking Signs is that there is no printed map or a photograph that would indicate the crucial decision points along the route, and that I could take along with me.
I could also imagine that GPS-based navigation might support me during wayfinding. But, rather than anything attached to my wrist, it would feel more comfortable if these are integrated in my clothes. Yet, one thing I have had people say to me is that, when I am disoriented, I could simply take out my phone and the maps will tell me where I am. This is where the voice of lived experience comes in: if I am disoriented, taking out my phone is not the first thing on my mind.
Identifying insights for planners and designers of urban environments
One thing I might ask architects, urban planners, and urban designers to do is to focus on simplicity. For instance, in architecture, materials with mirroring effects can be quite confusing for me. One reason is that due to the neurodegeneration, our perception and information-processing of the world around us can change. Upon perceiving multiplied objects or persons in a mirror, some of us might feel insecure, confused, or anxious.
Whereas I feel that in the city, colors work for showing me the way, and pictograms are helpful, except that international designs can differ between cities and countries, requiring me to re-interpret them each time. In another country, all post offices might have the same color and use the same pictograms, and if they do so across different cities, that makes it easier for me. Overall, it might help me if pictograms, colors, and signs were universally designed, and transferred into the architectural and urban design and planning processes.
When the city is encouraging people to go out, urban designers would also have to be mindful of risks for falling, e.g., by taking away the tripping hazards, and making sure sidewalks are not buckled. For instance, during the Covid pandemic, in some cities, outdoor patios were encouraged to maintain the possibility of eating in restaurants in a safe way, and to support the businesses. However, patios encroaching on the sidewalk mean that the space to move becomes limited. Additionally, social density may add noise, and it all can become quite disorienting. During the Covid pandemic, it did not seem that the environmental planners had considered disorientation as a factor for those changes, nor, that they had included people in wheelchairs, people who are blind, and people living with dementia in their planning conversations. From my point of view, the installation of some of those patios would not have been approved, or the city would have approved a scaled-down version. Yet, because of complexities around the pandemic, obviously, exceptions were being made.
As one scenario of an ideal dementia-sensitive future city, I might imagine that the architecture, the urban design, and the signage were simple; people would be supportive; space would be accommodating the needs of diverse people with and without disabilities; people like me would be included in research, planning departments, and federal ministries; and wayfinding would be supported via the built and social environment. In my view, if something works for people living with dementia, it also works for other people.
Yet, this leads me to another point of an inclusive society: for example, it would help social inclusion, if so-called dementia villages were not placed at a distance from the city, where you need to take public transport to visit. There is an emphasis on ageing in place, and care facilities are nowadays typically integrated in the city, while there are still some existing cases of so-called dementia villages that have been placed outside of the city. Overall, from my point of view, supportive communities for people living with dementia have to be inclusive and accessible.
Identifying complexities in developing dementia-sensitive built space
To conclude the previous sections: when the built and social environment is supportive, I can walk on my own, independently, and that reminds me of my previous life. This, again, helps my self-confidence, my mood; I am outside in nature, I can contact people; and I am simply proud that I am going on my own and finding my way, despite dementia. I am confident that even with some form of dementia, if you get a supportive built environment and supportive social aspects, you can live very long in a good shape, physically and mentally, because you do not diminish, because you have all the positive aspects and support, beside medication, that help you living.
At the same time, I have to note that, even if the urban environment, on the street level, has certain dementia-sensitive and wayfinding-supportive characteristics, during disorientation, it may also very well be that nothing will help me reorient or to find my way. For instance, the traffic would still be going by and create noise, in addition to the pedestrian traffic, which all adds to the confusion: it may become a blur during which I might not notice the little park or the heritage building across the street that I usually know so well and that helps me identify my location. So, in some ways, the design will stop people from getting disoriented. Yet, during disorientation, things that I would perceive or relate to under normal circumstances can become blank.
Also, we note that developing dementia-sensitive built space is important, but we also recognize it presents challenges. For instance, while there is an emphasis on ageing in place, many homes are currently not being built to age in place, and renovation companies are also not necessarily renovating to age in place. Hence, something may look beautiful, but may not necessarily be the best for a particular client: a beautiful design might sometimes draw our attention away and distract us, and can even be disorienting. When architects and renovation companies are asked for new home plans, or a renovation, I feel that our insight may prove invaluable when the environment is meant to support ageing in place.
For me, who lives with dementia, mobility and wayfinding in the urban environment are important aspects of social inclusion, because my independence is an important aspect for my quality of life. Independence means that I can access public spaces when I want to, without support by others, and that I can participate in social life. But, because of my progressive disease and its effects on my spatial abilities, spatial disorientation may occur – everywhere: in both indoor and outdoor environments, underground or above the ground.
Spatial orientation and wayfinding challenges can occur unexpectedly and frighten me. To give the reader an example, it can happen that, in my own familiar district, I cannot find my way back to where I am living; or, while going for a walk, I may have trouble self-localizing where I am, why I am there, and where I am heading to. Disorientation increases my anxiety. For this reason, I tend to take the same routes, and I avoid places that feel confusing for me.
It is important to note that, for me, the term ‘environment’ does not only have a physical aspect (e.g., the architecture, the arrangement of the buildings in the urban environment, the building heights, traffic, signage, soundscapes, illumination) but also a social aspect (e.g., society, community, living place).
As such, I define the concept of a ‘supportive environment’ as: (1) a supportive surrounding (e.g., buildings in certain arrangements, wayfinding support, urban design, as well as (2) supportive people (e.g., trained people who are positioned at certain decision points where people –and I do not only mean people living with dementia– are known to get disoriented or lost).
Identifying Where Changes in Urban Environments Might Need to Happen
For me, on the street level, wayfinding challenges can arise from an interplay of factors; e.g., (1) sensory and cognitive challenges due to the neurodegeneration; (2) environmental-, architectural-, and urban design characteristics; and (3) dynamically changing environmental characteristics, such as changing soundscapes, traffic, or illumination.
Especially construction sites can be challenging for me, because they block visual accessibility, or may look entirely different than I remember – and then, suddenly, everything is new for me. Crowded places and traffic are both challenging, because of the sound. I have to be careful when crossing a street as I may not note a car coming. It is a real problem for me.
I can also imagine that –in districts where people living with dementia and diverse other people who may find certain urban design aspects challenging live– the city could place trained people who could support us. These people could wear clothes that make them recognizable, so I know whom to ask for route instructions. My care partner might also be less nervous when they know that there are trained people who could support me.
Although the stigma exists that I am not able to read because of my dementia, I can say that reading is a function that lasts very long. As a result of this long-lasting ability, simple signage is another important aspect for me in the context of wayfinding. For signage, it matters how something is written, for instance, the type of letters or colors. Street signs could be made more salient by illuminating them, or by using colors that are the same in all cities of a country.
For instance, on airports, a twenty-minute walk can be easy when signs are placed repeatedly, highly visible, and when they follow universal design guidelines. Yet, that does not translate to urban design and streets directly: for instance, urban designers could mark certain routes on a sidewalk, but how does anybody know where you are going, or how to direct you when you are out for a walk, where, at any time, disorientation may occur?
Identifying strategies to feel navigationally-confident
I am, for example, more confident navigating my own district, and always take the same route. I tend to follow landmarks I have learnt, especially if these are placed repeatedly, like pillars I can follow. For example, on the way home, a specific birch tree can represent a cue for me to turn into the street where I live in. Yet, if the tree is being cut down, the cue is lost. Overall, a visible cue can turn in an emotional one, and an emotional one is even easier for me to remember because I make a connection to it.
Another strategy is asking other people for route instructions, and repeatedly along the way, until I recognize a familiar aspect of space. While I do not accept help from everyone, I find route instructions from strangers challenging to keep in mind; especially if they rapidly point out a list of left and right turns.
Some cities have also placed Talking Signs along the way, with a map that indicates my current location. They are based on verbal interaction: for instance, I could ask for the way, and the device would then offer route instructions. However, a challenge with such Talking Signs is that there is no printed map or a photograph that would indicate the crucial decision points along the route, and that I could take along with me.
I could also imagine that GPS-based navigation might support me during wayfinding. But, rather than anything attached to my wrist, it would feel more comfortable if these are integrated in my clothes. Yet, one thing I have had people say to me is that, when I am disoriented, I could simply take out my phone and the maps will tell me where I am. This is where the voice of lived experience comes in: if I am disoriented, taking out my phone is not the first thing on my mind.
Identifying insights for planners and designers of urban environments
One thing I might ask architects, urban planners, and urban designers to do is to focus on simplicity. For instance, in architecture, materials with mirroring effects can be quite confusing for me. One reason is that due to the neurodegeneration, our perception and information-processing of the world around us can change. Upon perceiving multiplied objects or persons in a mirror, some of us might feel insecure, confused, or anxious.
Whereas I feel that in the city, colors work for showing me the way, and pictograms are helpful, except that international designs can differ between cities and countries, requiring me to re-interpret them each time. In another country, all post offices might have the same color and use the same pictograms, and if they do so across different cities, that makes it easier for me. Overall, it might help me if pictograms, colors, and signs were universally designed, and transferred into the architectural and urban design and planning processes.
When the city is encouraging people to go out, urban designers would also have to be mindful of risks for falling, e.g., by taking away the tripping hazards, and making sure sidewalks are not buckled. For instance, during the Covid pandemic, in some cities, outdoor patios were encouraged to maintain the possibility of eating in restaurants in a safe way, and to support the businesses. However, patios encroaching on the sidewalk mean that the space to move becomes limited. Additionally, social density may add noise, and it all can become quite disorienting. During the Covid pandemic, it did not seem that the environmental planners had considered disorientation as a factor for those changes, nor, that they had included people in wheelchairs, people who are blind, and people living with dementia in their planning conversations. From my point of view, the installation of some of those patios would not have been approved, or the city would have approved a scaled-down version. Yet, because of complexities around the pandemic, obviously, exceptions were being made.
As one scenario of an ideal dementia-sensitive future city, I might imagine that the architecture, the urban design, and the signage were simple; people would be supportive; space would be accommodating the needs of diverse people with and without disabilities; people like me would be included in research, planning departments, and federal ministries; and wayfinding would be supported via the built and social environment. In my view, if something works for people living with dementia, it also works for other people.
Yet, this leads me to another point of an inclusive society: for example, it would help social inclusion, if so-called dementia villages were not placed at a distance from the city, where you need to take public transport to visit. There is an emphasis on ageing in place, and care facilities are nowadays typically integrated in the city, while there are still some existing cases of so-called dementia villages that have been placed outside of the city. Overall, from my point of view, supportive communities for people living with dementia have to be inclusive and accessible.
Identifying complexities in developing dementia-sensitive built space
To conclude the previous sections: when the built and social environment is supportive, I can walk on my own, independently, and that reminds me of my previous life. This, again, helps my self-confidence, my mood; I am outside in nature, I can contact people; and I am simply proud that I am going on my own and finding my way, despite dementia. I am confident that even with some form of dementia, if you get a supportive built environment and supportive social aspects, you can live very long in a good shape, physically and mentally, because you do not diminish, because you have all the positive aspects and support, beside medication, that help you living.
At the same time, I have to note that, even if the urban environment, on the street level, has certain dementia-sensitive and wayfinding-supportive characteristics, during disorientation, it may also very well be that nothing will help me reorient or to find my way. For instance, the traffic would still be going by and create noise, in addition to the pedestrian traffic, which all adds to the confusion: it may become a blur during which I might not notice the little park or the heritage building across the street that I usually know so well and that helps me identify my location. So, in some ways, the design will stop people from getting disoriented. Yet, during disorientation, things that I would perceive or relate to under normal circumstances can become blank.
Also, we note that developing dementia-sensitive built space is important, but we also recognize it presents challenges. For instance, while there is an emphasis on ageing in place, many homes are currently not being built to age in place, and renovation companies are also not necessarily renovating to age in place. Hence, something may look beautiful, but may not necessarily be the best for a particular client: a beautiful design might sometimes draw our attention away and distract us, and can even be disorienting. When architects and renovation companies are asked for new home plans, or a renovation, I feel that our insight may prove invaluable when the environment is meant to support ageing in place.
Discussion
In this perspective paper and ‘hearing the voice’ effort, we argued for involving people living with dementia and their lived experience when discussing aspects of dementia-sensitive environments. We then demonstrated involvement by discussing wayfinding in urban environments and co-authoring this article. Our discussions focused on why involving the perspective of people living with dementia in research and design/planning practice is important, and how this could take form, both in research and in design practice.
Involving People Living with Dementia in Research Projects
Involving people living with dementia in action groups, advisory boards, and as co-researchers decreases stigmatization (O'Connor et al., 2020) and can improve the quality of research outcomes (Mann & Hung, 2018; Nunn et al., 2021), due to fostering perspective-taking and understanding. Also, co-research with people living with dementia can bring positive co-learning processes and mutual benefits (Mann & Hung, 2018). To provide an example, the second author is co-investigator in a research project; and his co-researchers argued that his involvement and “being accountable to him as another principal investigator” was a “powerful turning point” for the direction of the research project (Phinney, 2021). Similarly, we experienced co-learning and understanding when writing the current article.
People living with dementia are able and interested to contribute their perspective to all stages of the research process (Roberts et al., 2020; Webb et al., 2020). This can include co-research and research co-design stages; e.g., identifying topics that people living with dementia find relevant and meaningful (O'Connor et al., 2020), and providing iterative feedback on a study design, the research objectives, procedures and study protocols, or ethics applications (Nunn et al., 2021). Dementia research networks can support researchers in reaching out to people living with dementia (Law et al., 2013; Roberts et al., 2020).
For an in-depth discussion on how participation in each of the research stages may look like, we direct interested readers to research projects where people living with dementia develop their own questions, have their own research ethics board, lead and conduct the research, and write the report (e.g., DEEP, n.d.; Dementia Enquirers UK, n.d.).
For future research, it appears worthwhile to also consider that manifold research projects involve the word ‘participatory’, ‘emancipatory’, ‘inclusive’ or similar; and, as we indicated earlier, research could further explore the demands to reach a quality that potentially translates to reaching practice (e.g., interventions, products, outcomes of built space); and how to measure the impact of participatory approaches or citizen research.
Participatory research also includes critical reflections and negotiations on roles and responsibilities; building and maintaining trustful relationships; and processes of co-learning and co-developing research knowledge (Hanlon, 2021). Researchers may need to diversify their competencies, e.g., interpersonal or active listening skills (Novek & Wilkinson, 2019). The co-design of research studies and articles might mean slowing down in order to get to know each other; paying attention to power dynamics; and seeing a person with an “appreciative lens helps to focus on strengths and possibilities,” while avoiding exploitation (Mann & Hung, 2018, page 587) or involving people as a ‘tick in the box’ (Bartlett, 2014).
Participatory research, as the second author points out, also means that researchers are challenged by ethical considerations about the involvement of people living with dementia directly in research, or as co-authors. For instance, in writing this article, as authors, we repeatedly faced the question of meaningful engagement of people living with dementia in research; and the question, how meaningful engagement is impacted by the stigma of dementia, and the stereotype of the individual as vulnerable, incapable, and incompetent.
This also relates to implicit bias: our decisions and our understanding of other people are affected by implicit, subconscious associations and stereotypes entrenched in society. For example, it would seem easy to tar all people living with dementia with the same frail-older-person brush, and assume all are similarly vulnerable and, therefore, all in need of protection.
It also might relate to time-consuming ethic application processes: there are cases where acquiring ethics approval and being able to start recruitment took one year, resulting in frustration that some review boards at times might be overly protective of people who are able of consenting and who also explicitly wish to contribute (Ries et al., 2020). In their important role, ethic boards balance between protecting “the interests of those unable to give their own consent” and guarding “against decisions based on stereotypes and assumptions” (Ries et al., 2020, page 2). As authors, this might leave us wondering whether the word dementia still brings to mind thoughts of incapability, or assumptions that a researcher will be unable to obtain credible input enough to question the legitimacy of the application.
Yet, a cultural shift is already happening in healthcare research. People living with dementia have been raising their voice for decades, and have advocated for their role as experts by lived experience (Alzheimer Europe, 2013; Bryden, 2015; Rohra, 2013). Not only are people living with dementia wanting and willing to be active contributors in research projects, there are also increasing numbers of research projects that –directly– include the voice of the lived experience (e.g., Mann & Hung, 2018).
Involving People Living with Dementia in Design or Planning Projects
Throughout this perspective paper, we referred to people living with dementia as experts on their lived experience. Here, it may be worthwhile to note that, when it comes to evaluating built space, research has identified notable differences between so-called experts and laypeople (Rambow, 2000). For instance, planning/design experts and the users of space/laypeople differ in their evaluation of the complexity of spatial layouts and wayfinding (Hölscher & Dalton, 2008) or certain materials of built space (Benz & Rambow, 2011).
There, the word ‘expert’ would refer to people professionally trained in a discipline; e.g., urban planners, urban designers, and architects who know the complex nature and manifold requirements of the planning or design process (Bromme & Rambow, 2000); and ‘laypeople’ would refer to people who did not receive professional training, and who interact with the built space (idem). Yet, it is important to note that ‘laypeople’ are “affected by the problems for which the experts are responsible” (idem, p. 542). As design or planning experts sometimes underestimate challenges experienced by the users of space (Kuliga et al., 2019), the inclusion and participation of people living with dementia, and supporting perspective-taking in planning and design remain crucial (Kuliga et al., 2021).
To give one example of how to involve people living with dementia in evaluations of built space, the first author notes that researchers and architects could collaborate with a working group of diverse people living with dementia. Such a pre-occupancy evaluation could implement conversational interviews and simulated walkthroughs, such as renderings/photos, physical models, or virtual reality walkthroughs of the planned space (e.g., to indicate spatial configuration, colors, signage, etc.). Or, in game-like approaches, playful methods could include using card-based tools, creative analytic formats, design thinking methods, and tactile elements, such as using bricks placed on the plans (e.g., to indicate building arrangements).
In this perspective paper, discussing wayfinding and urban design together accumulated in nuanced first-hand perspectives and direct accounts of lived experience. While lived experience is individual, varied, and can change over time (Williams, 2020), literature confirms some of the aspects we discussed, e.g., the link between urban stressors (such as traffic, social density, and noise) and mobility and out-of-home engagement in public places (Brorsson, 2013; Duggan et al., 2008; Gaber et al., 2019; Sheehan et al., 2006). Furthermore, some cities already incorporate community guides in existing programs (e.g., Downtown Safety Ambassadors Vancouver, n.d.), or have formulated national dementia strategies for built and social space (e.g., Dutch Ministry of Health Welfare and Sport, 2021; German Federal Ministry for Family Affairs Senior Citizens Women and Youth & and German Federal Ministry of Health, 2020).
In this perspective paper, we emphasized the importance of participatory approaches and citizen science in these efforts, especially in regard to evaluating urban environments that affect people living with dementia in their everyday life. Indeed, there is a noticeable paradigm shift in planning and design, towards involving the people who experience built space in decision-making; raising awareness of the topics in discussions with clients who commission planners or designers; raising awareness in the education of future generations of researchers and practitioners; and advocating for interdisciplinary research (e.g., Chrysikou, 2018). A supportive built and social environment can also add towards demographic sustainability, such as sustaining multi-generational structures and optimal living standards for diverse people (Kuliga et al., 2021). Recent initiatives, started by people living with dementia, appear promising to initiate further collaborations between people living with dementia and people who develop or conduct research on built, natural, social, rehabilitative, or healing environments (Ong, 2021).
Involving People Living with Dementia in Research Projects
Involving people living with dementia in action groups, advisory boards, and as co-researchers decreases stigmatization (O'Connor et al., 2020) and can improve the quality of research outcomes (Mann & Hung, 2018; Nunn et al., 2021), due to fostering perspective-taking and understanding. Also, co-research with people living with dementia can bring positive co-learning processes and mutual benefits (Mann & Hung, 2018). To provide an example, the second author is co-investigator in a research project; and his co-researchers argued that his involvement and “being accountable to him as another principal investigator” was a “powerful turning point” for the direction of the research project (Phinney, 2021). Similarly, we experienced co-learning and understanding when writing the current article.
People living with dementia are able and interested to contribute their perspective to all stages of the research process (Roberts et al., 2020; Webb et al., 2020). This can include co-research and research co-design stages; e.g., identifying topics that people living with dementia find relevant and meaningful (O'Connor et al., 2020), and providing iterative feedback on a study design, the research objectives, procedures and study protocols, or ethics applications (Nunn et al., 2021). Dementia research networks can support researchers in reaching out to people living with dementia (Law et al., 2013; Roberts et al., 2020).
For an in-depth discussion on how participation in each of the research stages may look like, we direct interested readers to research projects where people living with dementia develop their own questions, have their own research ethics board, lead and conduct the research, and write the report (e.g., DEEP, n.d.; Dementia Enquirers UK, n.d.).
For future research, it appears worthwhile to also consider that manifold research projects involve the word ‘participatory’, ‘emancipatory’, ‘inclusive’ or similar; and, as we indicated earlier, research could further explore the demands to reach a quality that potentially translates to reaching practice (e.g., interventions, products, outcomes of built space); and how to measure the impact of participatory approaches or citizen research.
Participatory research also includes critical reflections and negotiations on roles and responsibilities; building and maintaining trustful relationships; and processes of co-learning and co-developing research knowledge (Hanlon, 2021). Researchers may need to diversify their competencies, e.g., interpersonal or active listening skills (Novek & Wilkinson, 2019). The co-design of research studies and articles might mean slowing down in order to get to know each other; paying attention to power dynamics; and seeing a person with an “appreciative lens helps to focus on strengths and possibilities,” while avoiding exploitation (Mann & Hung, 2018, page 587) or involving people as a ‘tick in the box’ (Bartlett, 2014).
Participatory research, as the second author points out, also means that researchers are challenged by ethical considerations about the involvement of people living with dementia directly in research, or as co-authors. For instance, in writing this article, as authors, we repeatedly faced the question of meaningful engagement of people living with dementia in research; and the question, how meaningful engagement is impacted by the stigma of dementia, and the stereotype of the individual as vulnerable, incapable, and incompetent.
This also relates to implicit bias: our decisions and our understanding of other people are affected by implicit, subconscious associations and stereotypes entrenched in society. For example, it would seem easy to tar all people living with dementia with the same frail-older-person brush, and assume all are similarly vulnerable and, therefore, all in need of protection.
It also might relate to time-consuming ethic application processes: there are cases where acquiring ethics approval and being able to start recruitment took one year, resulting in frustration that some review boards at times might be overly protective of people who are able of consenting and who also explicitly wish to contribute (Ries et al., 2020). In their important role, ethic boards balance between protecting “the interests of those unable to give their own consent” and guarding “against decisions based on stereotypes and assumptions” (Ries et al., 2020, page 2). As authors, this might leave us wondering whether the word dementia still brings to mind thoughts of incapability, or assumptions that a researcher will be unable to obtain credible input enough to question the legitimacy of the application.
Yet, a cultural shift is already happening in healthcare research. People living with dementia have been raising their voice for decades, and have advocated for their role as experts by lived experience (Alzheimer Europe, 2013; Bryden, 2015; Rohra, 2013). Not only are people living with dementia wanting and willing to be active contributors in research projects, there are also increasing numbers of research projects that –directly– include the voice of the lived experience (e.g., Mann & Hung, 2018).
Involving People Living with Dementia in Design or Planning Projects
Throughout this perspective paper, we referred to people living with dementia as experts on their lived experience. Here, it may be worthwhile to note that, when it comes to evaluating built space, research has identified notable differences between so-called experts and laypeople (Rambow, 2000). For instance, planning/design experts and the users of space/laypeople differ in their evaluation of the complexity of spatial layouts and wayfinding (Hölscher & Dalton, 2008) or certain materials of built space (Benz & Rambow, 2011).
There, the word ‘expert’ would refer to people professionally trained in a discipline; e.g., urban planners, urban designers, and architects who know the complex nature and manifold requirements of the planning or design process (Bromme & Rambow, 2000); and ‘laypeople’ would refer to people who did not receive professional training, and who interact with the built space (idem). Yet, it is important to note that ‘laypeople’ are “affected by the problems for which the experts are responsible” (idem, p. 542). As design or planning experts sometimes underestimate challenges experienced by the users of space (Kuliga et al., 2019), the inclusion and participation of people living with dementia, and supporting perspective-taking in planning and design remain crucial (Kuliga et al., 2021).
To give one example of how to involve people living with dementia in evaluations of built space, the first author notes that researchers and architects could collaborate with a working group of diverse people living with dementia. Such a pre-occupancy evaluation could implement conversational interviews and simulated walkthroughs, such as renderings/photos, physical models, or virtual reality walkthroughs of the planned space (e.g., to indicate spatial configuration, colors, signage, etc.). Or, in game-like approaches, playful methods could include using card-based tools, creative analytic formats, design thinking methods, and tactile elements, such as using bricks placed on the plans (e.g., to indicate building arrangements).
In this perspective paper, discussing wayfinding and urban design together accumulated in nuanced first-hand perspectives and direct accounts of lived experience. While lived experience is individual, varied, and can change over time (Williams, 2020), literature confirms some of the aspects we discussed, e.g., the link between urban stressors (such as traffic, social density, and noise) and mobility and out-of-home engagement in public places (Brorsson, 2013; Duggan et al., 2008; Gaber et al., 2019; Sheehan et al., 2006). Furthermore, some cities already incorporate community guides in existing programs (e.g., Downtown Safety Ambassadors Vancouver, n.d.), or have formulated national dementia strategies for built and social space (e.g., Dutch Ministry of Health Welfare and Sport, 2021; German Federal Ministry for Family Affairs Senior Citizens Women and Youth & and German Federal Ministry of Health, 2020).
In this perspective paper, we emphasized the importance of participatory approaches and citizen science in these efforts, especially in regard to evaluating urban environments that affect people living with dementia in their everyday life. Indeed, there is a noticeable paradigm shift in planning and design, towards involving the people who experience built space in decision-making; raising awareness of the topics in discussions with clients who commission planners or designers; raising awareness in the education of future generations of researchers and practitioners; and advocating for interdisciplinary research (e.g., Chrysikou, 2018). A supportive built and social environment can also add towards demographic sustainability, such as sustaining multi-generational structures and optimal living standards for diverse people (Kuliga et al., 2021). Recent initiatives, started by people living with dementia, appear promising to initiate further collaborations between people living with dementia and people who develop or conduct research on built, natural, social, rehabilitative, or healing environments (Ong, 2021).
Conclusions
In this perspective paper, we advocated that the inclusion and participation of people living with dementia in all stages of the research process provides novel and nuanced perspectives – and it is feasible. It may mean that researchers need to diversify their competencies. Researchers also may need to reflect on their roles, on finding a shared language, and on participatory research approaches and its definitions in general. Importantly, researchers might need to relinquish some control to engage in perspective-taking.
With this ‘hearing the voice’ effort, we seek to inspire further debates; e.g., on developing further approaches for participatory, inclusive methods and co-research, listening to people living with dementia, and engaging in perspective-taking. We also seek to inspire urban designers, urban planners, and architects to involve the perspective of people living with dementia, e.g., by collaborating with researchers who could facilitate action groups and citizen science, so users can provide early feedback about built space; and by listening to aspects people living with dementia find meaningful in everyday life.
Future research could also involve larger groups of people living with dementia with diverse backgrounds as research partners. We also note that, naturally, with a different author team, this may have been a different paper, as these were two of many voices. In order to hear the diverse other voices, inclusion, participation, and perspective-taking are vital.
With this ‘hearing the voice’ effort, we seek to inspire further debates; e.g., on developing further approaches for participatory, inclusive methods and co-research, listening to people living with dementia, and engaging in perspective-taking. We also seek to inspire urban designers, urban planners, and architects to involve the perspective of people living with dementia, e.g., by collaborating with researchers who could facilitate action groups and citizen science, so users can provide early feedback about built space; and by listening to aspects people living with dementia find meaningful in everyday life.
Future research could also involve larger groups of people living with dementia with diverse backgrounds as research partners. We also note that, naturally, with a different author team, this may have been a different paper, as these were two of many voices. In order to hear the diverse other voices, inclusion, participation, and perspective-taking are vital.
About the Authors
Helga Rohra is an internationally recognized dementia advocate, who lives with Lewy-Body-Dementia since 2010 (when she was diagnosed in her early fifties), and with Dementia of the Alzheimer Type since 2019. Her former profession was a translator in the field of neurology and dementia. She is a Global Dementia Campaigner, and active in manifold international committees, societies, initiatives, and boards. Currently, she is engaged in the WHO - Brain Health Unit - Focus Groups; as Purple Angel Ambassador, and in the DZNE Patient Council. She has also been active in public media and written books, such as the renowned book, “Stepping out of the shadows: Why I advocate for our rights as people affected by dementia.”
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Jim Mann is an internationally recognized dementia advocate who was diagnosed with Dementia of the Alzheimer Type in 2007 at the age of 58. He holds an honorary Doctor of Laws degree from the University of British Columbia, for his advocacy efforts for the rights of people with dementia, countering negative stereotypes and promoting an inclusive society. He volunteers in manifold societies, boards, patient engagement advisory groups, public media, and in research. He also is a co-investigator in a research project on stigma and social citizenship at the University of British Columbia, and co-leads a Telepresence Robot research project. Jim has received several awards for his advocacy, and he has authored several research publications in renowned academic journals.
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Mike Rommerskirch-Manietta is trained as geriatric nurse and nursing scientist. He works as a research associate in the research group Implementation Science at the German Center for Neurodegenerative Diseases (DZNE) in Witten. In his PhD, he conducts a participatory research project that focuses on the preferences for leisure activities of people receiving adult day services. He holds a Master of Science from the University of Witten/Herdecke.
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Martina Roes is Site Speaker and Senior Research Group Leader at the German Center for Neurodegenerative Diseases (DZNE) in Witten, and Professor for Nursing Science and Health Care Research at the University of Witten/Herdecke. Previously, she has been a Professor for Nursing Science at the University of Applied Sciences in Bremen. She holds a PhD from the University of Bremen. Martina Roes has been a Robert Bosch Foundation Fellow (PhD) and a Commonwealth Harkness Research Fellow (PostDoc). Her research focuses on implementation science, methods for participatory research; and person-centered care for people living with dementia.
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Saskia Kuliga is a post-doctoral researcher at the German Center for Neurodegenerative Diseases (DZNE) in Witten, and the University of Witten/Herdecke. She holds a PhD from the University of Freiburg. Previously, she has been a DAAD Postdoc Fellow at the Singapore-ETH Centre Future Cities Laboratory in Singapore, and a Bauhaus Postdoc Fellow at the Chair for Information Science in Architecture at Bauhaus University Weimar. Her interdisciplinary research focuses on human-environment interactions, such as how individuals behave in, experience, and evaluate real and virtual environments; with a recent focus on participatory approaches.
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Acknowledgements
We thank: Christian Köbke for technical support during recording the meetings; René Müller-Widmer, Bernd Albers, and the German Centre for Neurodegenerative Diseases, for practical support around the topic of co-authoring an article together with people who are living with dementia; Daniel Gan for establishing a connection to Jim Mann who added a new angle to our initial considerations; and the three reviewers for their time and effort.
Author contributions
Conceptualization—SK, HR; Meetings/Content—HR, JM, SK, MRM; Transcription—SK; Writing: Original Draft Preparation—SK; Writing: Review First Draft—JM, HR, SK, MRM, MR; Writing: Review Second Draft—JM, HR, SK, MRM; Writing: Editing—SK, JM, HR; Response to Reviews— JM, SK, HR, MRM, MR; Coordination—SK. All authors have read and agreed to this version of the manuscript.