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Abstract

Neighbourhoods are known to help maintain functional abilities and enable out-of-home activities and social participation for people living with dementia. Dementia friendly and inclusive communities (DFC) frameworks recognize the importance of developing supportive and empowering environments for people living with dementia and their families. Beyond the core objective of raising awareness and eliminating stigma associated with dementia, most DFC frameworks also focus on improving accessibility and navigability in the neighbourhood environment. Limited research on this topic points to the importance of evidence-based design of the neighbourhood built environment to promote mobility and wayfinding, legibility, familiarity, and safety for people living with dementia. Increased relevance of DFCs for policy and practice calls for expanding this body of knowledge. The proposed study, titled “Dementia-inclusive Spaces for Community Access, Participation, and Engagement (DemSCAPE),” focuses on identifying neighbourhood destinations considered important by people living with dementia, as well as neighbourhood built environmental features relevant for their outdoor mobility, engagement, and social participation. This study protocol paper offers key information on 1) the need for mixed methods research on this topic and its theoretical and methodological underpinnings, 2) study sampling and recruitment strategy, 3) data collection methods, which include a series of structured and semi-structured sit-down interviews and a walk-along interview, 4) procedure for data analysis, 5) ethical and methodological considerations, and 6) measures taken to enhance study rigour.

Keywords

ethnography mixed methods photo elicitation methods in qualitative inquiry community based research

Background

There is growing interest in examining the neighbourhood environment for its role in influencing out-of-home activity and participation in later life (Chaudhury et al., 2016; Richard et al., 2009; Rosso et al., 2011; World Health Organization, 2021). While it is known to facilitate healthy aging by supporting older adults’ functional abilities and enabling social participation (World Health Organization, 2015), the supportive role of the neighbourhood environment has also been recognized in dementia research, policy, and practice (Keady et al., 2012; Li et al., 2021). Research shows that people living with dementia experience challenges in finding their way around the neighbourhood due to difficulties with retention and recall of spatial information, and with planning and executing spatial decisions (Brorsson et al., 2011; Rosenkvist et al., 2010; Ward et al., 2018), which can challenge the ability to meaningfully comprehend and interpret the environment (Brittain et al., 2010; Olsson et al., 2013). Factors that exacerbate outdoor mobility challenges for people living with dementia include physical barriers (e.g., inadequate street infrastructure) and cognitive barriers (e.g., complex environments with high volumes of traffic, requiring the ability to simultaneously process high levels of stimuli from disparate sources) (Blackman et al., 2007; Brittain et al., 2010; Brorsson et al., 2011; 2016). People living with dementia also experience difficulty finding their way in neighbourhoods where buildings and streets lack critical distinguishing features (Burton & Mitchell, 2006; Malvern, 2018), such as environmental features that look the same. This can be misleading and result in confusion, exacerbating outdoor mobility and wayfinding challenges for people living with dementia (Mitchell, 2014).

This has prompted the move to create dementia friendly and inclusive communities (DFCs) worldwide (Alzheimer’s Disease International, 2015); encompassing actions and initiatives aimed at fostering an affirming, empowering, and supportive environment that promotes equal rights and resources for people living with dementia and their families, raises public awareness, and eliminates stigma associated with dementia (Courtney-Pratt et al., 2018; Lin et al., 2014; Lin & Lewis, 2015; Shannon et al., 2019). A key part of DFCs is also enabling ease of access and navigation of outdoor spaces and community destinations (Houston et al., 2020). The limited research in this area suggests the importance of evidence-based design principles for the neighbourhood built environment to promote wayfinding, legibility, familiarity, and safety for people living with dementia (Blackman et al., 2007). Planning and design principles include: 1) providing a variety of environmental features that can serve as orientation and wayfinding cues; 2) ensuring high congruence between form and function; and 3) maximizing visibility and noticeability of environmental features (Burton & Mitchell, 2006). The evidence on supportive neighbourhood built environmental features for people living with dementia comes primarily from research conducted by Burton and Mitchell (2006) and is complemented by subsequent work in dementia studies that focus less on the neighbourhood built environment per se, and more on the lived experience in the outdoor context. Given the growing interest in the world of policy and practice with regard to creating DFCs, and the need to expand the body of knowledge on dementia and the neighbourhood built environment, a mixed-method study, named “Dementia-inclusive Spaces for Community Access, Participation, and Engagement (DemSCAPE)” is undertaken by the authors. Its objectives are two-fold: 1) to identify neighbourhood destinations that people living with dementia visit and changes in the patterns of those visits over time, and 2) to identify neighbourhood built environmental features that affect their outdoor mobility, engagement, and social participation.

Explanation and Justification of Method

This study has theoretical underpinnings in the field of environmental gerontology (EG), which focuses on the description, explanation, and optimization of the interaction between older adults and their environments (Schwarz, 2012; Wahl & Lang, 2003). According to the Ecological Theory of Aging (Lawton, 1985; Lawton & Nahemow, 1973), a prominent theory in EG, person-environment relations in the context of aging are defined by individual coping abilities of the person, the degree of environmental challenges, and the extent to which the person copes with challenges posed by the environment. Related concepts underpinning person-environment relations in the context of aging include mastery, agency, autonomy, security, comfort, identity, belonging, and place attachment (e.g., Chaudhury & Oswald, 2019; Golant, 2011; Parmelee & Lawton, 1990; Rowles, 1983; Rubinstein & Parmelee, 1992; Wahl et al., 2012). In this study, we take a strengths-based approach focusing on the extant capabilities and potential of people living with dementia to engage with their environment and maintain agency, autonomy, and social participation (Alzheimer’s Disease International, 2020; Ward et al., 2022).

This study employs a mixed-methods approach based on the following data collection methods: 1) structured questionnaire; 2) semi-structured sit-down and walk-along interviews; and 3) photo and video documentation and elicitation. While distinct, these methods are synergistic, interrelated, and meant to enhance the breadth and depth of the study findings. The structured questionnaire, ‘Participation in Activities and Places Outside Home (ACT-OUT)’ (Margot-Cattin et al., 2019) focuses on exploring patterns of participation in places outside one’s home over time. Part 1 of the ACT-OUT tool contains questions pertaining to 24 community destinations (across four clusters) to identify places that participants presently go to and changes in visits to places over time. Part 2 of the tool contains more detailed questions that are asked specific to 1-2 places per cluster in Part 1. Part 3 consists of questions about participants’ life satisfaction, attitude to risk-taking, and concerns regarding going out (e.g., getting lost, falling, and being stressed and embarrassed).

Walk-along interviews involve mobilizing interviews and conducting them during walks with the participant (Carpiano, 2009; Kusenbach, 2018). This method has proven useful in previous research exploring the neighbourhood environment relations of older adults (Brookfield et al., 2020; Carroll et al., 2020) and people living with dementia (Burton & Mitchell, 2006; Clark et al., 2020; Cook, 2020; Kullberg & Odzakovic, 2017; Malvern, 2018; Odzakovic et al., 2018; 2019; Ward et al., 2018). It has also been used by municipal planners to engage people living with dementia in consultations and staff training and awareness initiatives to identify dementia friendly and inclusive priorities and actions (City of Burnaby, 2017; City of New Westminster, 2016; City of Richmond, 2019). When people with dementia, their carers, and families actively lead DFC development, they can ensure changes respond to their needs, priorities, preferences and choices (WHO, 2021).

Walk-along interviews are useful for exploring participants’ perceptions and experience of the neighbourhood built environment on-the-spot, by putting them directly in contact with the outdoor setting and engaging them to describe and reflect on what they see, hear, and feel in the moment. The participant plays an active role in shaping the interview as a navigation guide and environmental expert of their neighbourhood of residence (Carpiano, 2009; Garcia et al., 2012). This method helps ground interviews in both participant’s and researcher’s shared experience of the immediate physical-social context, and generates more complex understandings of people-place relationships (Hand et al., 2017). Exposure to different stimuli during the walk can also support the recall of issues, incidents, and thoughts that may not be top-of-mind for people living with dementia during a sit-down interview (Carpiano, 2009). Thus, the walk-along interview method helps draw out the emplaced experience of the person living with dementia, centring the role of place in shaping experience and, in turn, cognition (Howes, 2005; Bailliard, et al., 2022). The method calls for a flexible approach to allow for unplanned questions to arise from being outside and enable participants to freely reflect on the built environment and its features (Evans & Jones, 2011; Ottoni et al., 2016; Van Cauwenberg et al., 2012).

Photo and video documentation done during the walk-along interviews generates a visual record of the participant’s walking experience and the neighbourhood built environment features that are discussed during the walk. Previous research suggests the importance of conducting semi-structured sit-down interviews after walk-along interviews to facilitate further reflection and elaborate on the observations and insights shared during the walk (Odzakovic et al., 2018; 2019). Photos and videos recorded during the walk serve as the foundation for a follow-up interview and serve as elicitation cues to guide conversation and reflection. Photos are known to facilitate reflection on issues that are difficult to discuss, as well as trigger people’s memories of relevant events or experiences (Brorsson et al., 2018; Coleman, 2016; Guerra et al., 2013; Mysyuk & Huisman, 2020; Patton, 2014; Pink, 2009; Seetharaman et al., 2021). Videography is a powerful method of capturing and representing sensorial aspects of the researcher’s and participant’s place encounters through movement (Paterson & Glass, 2020). Going beyond the visual dimension, video elicitation also helps “prompt, remind, and encourage participants to talk about their embodied, more-than visual experiences of place” (Paterson & Glass, 2020, p. 6) and helps “trigger individual but also collectively produced recollections of the multisensory encounters” from the walk (p. 1). The narrative generated through semi-structured interviews and the audio-visual data from the walk-along interviews together can provide a composite understanding of people-place relationships based on the lived experience of participants.

Sampling and Recruitment

The study sample consists of 24–30 community-dwelling people living with mild to moderate levels of dementia or mild cognitive impairment from urban areas in British Columbia, Canada. A small proportion (2-3 participants) of this sample includes participants with moderate to advanced dementia and their informal caregivers. Participants were selected to participate in the study if they: 1) had a self-declared diagnosis with mild to moderate dementia or mild cognitive impairment, 2) lived at home in the community, 3) could move independently (with or without an assistive device) in their neighbourhood, 4) walked outside (regularly or occasionally), and 5) could communicate in English.

The recruitment of participants was conducted through project partnerships with local government bodies, organizations providing advocacy and community-based supports and services for people living with dementia, and clinicians providing diagnostic and post-diagnostic care. Avenues pursued for recruitment included: 1) presenting and distributing flyers to members/attendees of local action/advisory groups, support groups, recreation programs, and local community events; 2) physical posters placed at community centres and seniors centres, and social media posts and email blasts to networks of dementia support and advocacy groups and organizations; 3) contacting select patients screened by clinicians at a local memory clinic; and 4) inviting participants who have participated in the authors’ previous research projects.

Interested participants contacted the research team via email or telephone using the information provided in the recruitment material (i.e., flyers, brochures). The only exception to this approach was patients from the memory clinic. The clinicians identified patients from the clinic’s database and electronic medical record (EMR) who met the inclusion criteria and had given their consent to be re-contacted for new studies. This list of patients (with contact information) was shared by the clinic with the research team members, who invited patients to participate in the study by phone.

The research team followed ethics-approved telephone or email script to inform participants about the study and screen for inclusion criteria. The consent form was sent to the participant before the first interview, and was reviewed with the participant by the research team during the meeting and signed before starting the interview.

Data Collection

Data collection was conducted over the course of four sessions with the participants, roughly 1 week apart. Three of these sessions are sit-down interviews, structured or semi-structured, and one is a walk-along interview (see Table 1 for timeline of data collection activities). For participants who indicated that they are comfortable meeting in-person, sit-down interviews were conducted in their home, local café or community centre near their home, or at the authors’ institution. Participants who were not comfortable meeting in-person were offered the option to meet the researchers virtually (using the Zoom web conference platform) for the interviews. The walk-along interview was conducted in the participant’s neighbourhood on a route that they regularly take (i.e., at least once every 2 weeks) to walk from their home to a community destination. While the person living with dementia is the primary participant, their informal care partner (if they have one) was encouraged to join the participant during interviews so that they may provide support, as needed (e.g., for survey questions requiring factual information related to demographics and out-of-home activity, or being by their side during the walk-along interview). The following sections discuss the content and procedure of each session.

Table 1.

Timeline of Data Collection Activities.

Session name	Activities	Data collected
Week 1
Session 1	Demographics, ACT-OUT survey, and outdoor routine questionnaires	Details regarding a) demographics, b) places visited and changes in visits over time, c) weekly routine of outdoor activity
Week 2
Session 2	Semi-structured sit-down interview and walk-along planning	a) Audio-recorded accounts of participant’s outdoor walking experience, b) notes on verbal and non-verbal gestures, c) route map for walk-along
Week 3
Session 3	Walk-along interview	a) Audio- and video-recorded accounts of participant’s outdoor walking experience, b) photos of environmental features discussed during the walk, c) notes on verbal and non-verbal gestures, and d) GPS log of the walk
Week 4
Session 4	Semi-structured sit-down interview and photo- and video-elicitation	a) Audio-recorded accounts of participant’s outdoor walking experience, b) notes on verbal and non-verbal gestures

Session 1: Sit-Down Interview 1

The first sit-down session (60–90 minutes) involves completing three structured questionnaires with the participant: 1) participant (and care partner, if present) demographics, 2) temporal and spatial patterns of out-of-home activity using the ACT-OUT, and 3) routine of regular visits/walks to places outside the home. The questionnaires were administered by one research assistant, with the data recorded by a second research assistant using Qualtrics surveys, as well as audio-recorded using primary and backup recorders.

Session 2: Sit-Down Interview 2

The second sit-down session (60–90 minutes) involves conducting a semi-structured interview with the participant to explore the participant’s 1) experience of walking outside, 2) attitudes, perceptions, and preferences regarding outdoor walks, 3) awareness of the neighbourhood environment, and 4) spatial and temporal patterns regarding outdoor walking. The interview was conducted using an interview guide (key questions listed in Table 2) by one research assistant. The conversations were audio-recorded using primary and backup recorders, and a second research assistant took notes on the participant’s behavioural, verbal, and non-verbal cues using a Qualtrics survey.

Table 2.

Extract of Sit-Down Interview 2 Guide.

Questions	Probes
1) Could you describe your experience of walking outside in your neighbourhood?	a) Do you have any challenges/difficulties while walking outside? b) How do you cope with them?
2) How important is it for you to walk outside in your neighbourhood?	a) How does walking in your neighbourhood help you?
3) Where in your neighbourhood do you like to walk?	a) Why do you like walking in these places in your neighbourhood? b) How far (from your home) do you walk in your neighbourhood?
4) When do you prefer to walk in your neighbourhood?
5) How much time do you like to spend walking outside?
6) Do you walk outside alone?	a) Do you mostly walk alone or with your caregiver?
7) Are there parts of your neighbourhood that are not good for walking outside?	a) What problems do these places have?
8) Which places in your neighbourhood are you familiar with?	a) What makes these places familiar?
9) What changes do you see in your neighbourhood while walking outside?	a) Do changes in your neighbourhood make it seem less familiar to you?
10) Since being diagnosed with dementia, how do you think walking outside has changed for you?
11) How has COVID-19 affected your outdoor walking?	a) Has it changed your outdoor walking routine?
12) How do you feel about walking in your neighbourhood in the future?	a) What do you think might change?

The second objective of this interview was to plan for the walk-along interview. This involves two activities. The first planning activity is selecting and mapping the destination and the route of the walk with the participant. The lead research assistant presented a list of the participant’s routine walking destinations gathered from Session 1: Interview 1, asking the participant to indicate which place is the most important to their everyday routine, and where they would like to go in the next session, i.e., the walk-along interview. Once the destination was selected, the route to the destination was mapped. The destination or route chosen may serve different purposes (e.g., to run errands, to get exercise) and there is flexibility in choosing this, as the purpose is to explore the participant’s out-of-home mobility patterns and community participation in whatever form they take. A second research assistant recorded the route information using ArcGIS Field Maps, a spatial data collection application which displays the route map to the participant as it is being drawn. They also took notes using a Qualtrics survey to record the participant’s verbal and non-verbal cues during the interview.

The second planning activity is testing video recording equipment with the participant for the walk-along interview. The participant was asked if they would be willing to wear a GoPro camera in the next session to video-record the walk-along interview from their point of view. Participants who were interested in wearing the camera were asked to try different options of wearing the camera (i.e. attached to a cap, chest-strap, or backpack) and indicate their preference. If the participant approved, then the participant-worn camera was confirmed for the walk-along interview.

After this session, the research assistants walked the chosen route to familiarize themselves with the environment and identify specific sidewalk issues, obstacles, and supportive features (e.g., benches, shelter). These data (i.e., locations of barriers and supportive features, and corresponding photos) were recorded using ArcGIS Field Maps on an iPad or smartphone.

Session 3: Walk-Along Interview

The third session involves conducting walk-along interviews (60–90 minutes) with participants to explore how they perceive, understand, and interact with the neighbourhood environment while walking outside. The participant was accompanied by three members of the research team. The first research assistant conducted the interview and walked alongside the participant, while the second walked 3–4 m behind using the ArcGIS Field Maps app to record GPS log data. They also noted the participant’s movement and gestures, and took photos of environmental features being pointed at or talked about. The third research assistant also walked behind wearing a cap-mounted GoPro camera, which is the primary source of video recording. Additional video was recorded by the GoPro camera worn by the participant, if chosen. The interview was also audio-recorded by wireless microphones worn by the participant and the first research assistant. The interview guide (see Table 3 for extract) includes questions asked at different points during the walking route from the participant’s home to the chosen destination, and back.

Table 3.

Extract of Walk-Along Interview Guide.

Questions	Probes
1) What do you do to prepare for the walk outside?	a) Is there anything you need to remember to do before leaving your home?
2) Describe what your walk on this route typically looks or feels like?	a) What are you looking at while walking here?b) What are you thinking about during the walk?
3) What problems do you experience while you walk here?	a) Do the streets in this area pose problems?b) Is there anything here that you find confusing or overwhelming?
4) What do you do to remember the route?	a) Do you find it difficult to remember?b) Do you experience trouble deciding which way to go while you walk here?c) Do you look for clues on the street to help you remember which way to go?
5) How do you identify your surroundings while walking here?	a) Do the streets here offer clues that help you know where you are?b) Do you sometimes find it difficult to recognize your surroundings while walking here?
6) How familiar are you with this route?	a) What makes this route familiar to you?b) Is there something here that doesn’t feel familiar to you?
7) What changes have you noticed recently in this area?	a) How do they affect your walks here?
8) How far are we from the destination?	a) Does the street give you clues that tell you how far you are from the place?b) When you’re nearing the destination, do you see anything there that tells you you’re close?
9) Do you pause or go elsewhere while walking this way to our destination?
10) At the corner where we turned how did you decide which way to go?	a) Do you see something on that street that helps you make that decision there?
11) How do you feel about the activity at the destination?	a) How do you feel after you’re done there?
12) How is the walk back home different from the walk to the destination?	a) Do you prefer one over the other?
13) What problems do you experience on your way back?	a) What do you do when these problems happen?
14) Do you notice things on the way back that you don’t usually see on the way to the destination?
15) Do you find it difficult finding your way back?	a) Is there something on the street that helps you find your way back home?

Session 4: Follow-Up Sit-Down Interview

The fourth and final session involves conducting a follow-up semi-structured sit-down interview (90–120 minutes) with participants to delve deeper into aspects and features of the neighbourhood environment that shape their outdoor walking experience. Each walk-along interview yielded different topics for follow-up. The interview guide for each participant was developed shortly after their walk-along to tailor the questions to their specific route walking experience. This interview is also video- and photo-elicited. Before this session, research assistants reviewed video and photos recorded during the walk-along interview, decided on items for follow-up, then selected video clips and photos to elicit participants’ responses during the interview. During the session, the lead research assistant explored key issues identified for the follow-up interview with the participant, using the interview guide. While doing so, they presented supporting video clips and photos displayed on a laptop. The second research assistant recorded notes of the participant’s verbal and non-verbal cues during the interview using a Qualtrics survey on an iPad.

Data Analysis

The data from the ACT-OUT survey questionnaire were used primarily to gain a temporal perspective on community participation, based on visits to neighbourhood destinations, among the participants and identify patterns of retention and abandonment of different community destinations. Percent participation in each destination and p values were determined by running one sample t-tests on IBM SPSS Statistics 24 for each time point (i.e., past, present and future) to see if community participation changes for participants over time. To evaluate if destinations are abandoned or retained, past participation frequency counts were subtracted from present participation for each destination in the survey questionnaire.

The analytical methodology for the data generated through interviews draws on a combination of thematic and framework analyses (Braun & Clarke, 2021; Braun et al., 2019; Gale et al., 2013). Interview transcripts were generated for sessions 2, 3, and 4 from the audio recordings using Otter. ai transcription software, and cleaned for comprehensibility and legibility by research assistants. Transcripts along with photos and videos were analyzed using NVivo qualitative research data analysis software in the following stages:

1) Research assistants worked together to code the data of the first three participants in the sample. The resulting themes and codes were used to generate a draft coding framework. The coding framework was reviewed by key team members including the investigators focusing on the following: a) level of congruence between the raw data and provisionally identified codes and themes; b) conceptual rationale and integrity of clustering codes to generate meaningful themes; c) comparison of codes and themes across participants to assess consistency and variations in meaning; and d) discussion to resolve conflicting perspectives on the above issues and develop a revised coding framework.

2) Research assistants used the revised coding framework to code the remaining participants’ data. The framework was further revised and refined at various stages in the coding process to integrate any new themes and codes generated from other participants’ data.

3) Research assistants created data charts, one for each theme in the framework, where the rows represent each participant in the sample, and columns represent the codes that are grouped under that theme. The data charts include summaries of the coded data of each participant in the sample.

4) Research assistants reviewed the data charts and wrote memos, one for each theme in the framework, to go beyond individual case descriptions and look for possible explanations for what the data tell us about that theme. The memos include descriptions of the theme, constituent codes, and how the data build on extant empirical evidence on the topic, summaries of coded data, and deviant cases.

Ethical Considerations

This study adopts a process consent approach, ensuring that participants’ informed consent is continual and ongoing (Dewing, 2007; Hellström et al., 2007; Rivett, 2017; West et al., 2017). Consent is sought at the start of each research activity. Written consent is sought before all activities begin and oral consent at subsequent stages (Pesonen et al., 2011; Thoft et al., 2021). This offers room to remind participants of critical study details and enable them to exercise choice at each stage (Hellström et al., 2007). Participants’ capacity to provide informed consent is established based on their understanding of the specific research activity (Dewing, 2007; Heggestad et al., 2013). Research assistants selected for conducting the interview role had previous experience interacting with persons living with dementia and participated in multiple training sessions leading up to data collection. While seeking initial consent, research assistants gauge participants’ understanding of the key elements of study activities, the voluntary nature of their participation, and their ability to withdraw from the study at any point. Based on the research assistant’s perception/evaluation of participants’ understanding, research assistants decide whether informed consent or assent form would be completed. In case of assent, participants’ verbal expressions that suggest their willingness to participate in the study are recorded and interpreted as assent (Dewing, 2007). This is supplemented by informed consent provided by care partners.

During data collection, participants have the opportunity to participate in interviews with their informal caregivers to receive direct or indirect support during study activities. While interviewing dyads, research assistants take steps to ensure that the voice of the person living with dementia is amplified (Malvern, 2018; McKillop & Wilkinson, 2004). Interviews employ the method of “indirect repair” (Sabat, 1991) to support participants’ efforts to communicate their thoughts. A “balanced interaction” is maintained with participants, refraining from drawing conclusions regarding participants’ ability to form or express views, based on their cognitive and linguistic difficulties (Sabat, 1991, p. 296). Other considerations include: 1) active listening, offering breaks from the interview, as needed (Pratt & Fiese, 2004; Cridland et al., 2016), p. 2) asking clear and concise questions free of jargon or confusing terms (Quinn, 2017, p. 3) repeating and reinforcing important details and providing reminders to support voluntary recall (Cridland et al., 2016; Olsson et al., 2013; Quinn, 2017; Walsh & Griffiths, 2020); and 4) writing out questions or providing large font questions for participants to read and better understand what is being asked during interviews. During the walk-along interview, when participants appear lost, confused, or are going the wrong way, research assistants try to create a safe and reassuring space to understand participants’ needs, and provide support accordingly, as needed.

Rigour

In this study, rigour is enhanced by: 1) multiple sessions (four interviews) with each participant to help build rapport and facilitate in-depth exploration of the topic; 2) data triangulation using different methods (i.e., structured questionnaire, semi-structured sit-down and walk-along interviews, photo and video documentation); 3) analytic triangulation through independent coding of data by different research team members; 4) conducting regular debrief meetings within the team to provide peer support on substantive, procedural, methodological, and ethical issues encountered through data collection and analysis; 5) leaving an audit trail by documenting steps taken in data collection and analysis through reflection journals maintained to record substantive, procedural, and reflexive notes from the field; 6) memos to document thought process behind coding and analytic decisions; and 7) eliciting participant feedback on methods during data collection, particularly the walk-along interview, to support ongoing refinement of data collection procedures (Padgett, 2014).

Conclusion and Implications

This study builds on the goals of the DFC movement:1) eliminating the stigma surrounding dementia; 2) spreading dementia awareness and education; 3) empowering people to know their rights; 4) enhancing people’s engagement in the community; and 5) improving accessibility of spaces and services (Alzheimer’s Disease International, 2015; World Health Organization, 2017). Further, it reflects the philosophy of the movement by centring initiatives and activities on the meaningful engagement, full inclusion, and social participation of people living with dementia at all stages (Alzheimer’s Disease International, 2015). This study comes at an opportune moment when DFC plans are recognizing the value of learning from people living with dementia about their experience of navigating their community and translating this knowledge into city planning and design (City of New Westminster, 2016). While our study seeks to help advance research on the neighbourhood built environment and dementia, and expand empirical and theoretical understanding of people-place relations, we recognize the potential of this body of knowledge to inform and guide city planning and design through evidence-based, context-relevant tools providing DFC planning guidance. Hence, the study findings will be used to generate evidence-based knowledge transfer tools and resources that highlight features of the neighbourhood built environment crucial to foster outdoor mobility and wayfinding for people living with dementia. It is expected that these outcomes will help municipal decision-makers and planners strategically create DFCs.

In this paper, we lay out a mixed-methods approach of conducting research on this topic by employing structured questionnaires, semi-structured sit-down and walk-along interviews, and photo and video documentation and elicitation to build a robust knowledge-base that has real-world implications while being centred on the lived experience of people living with dementia and their families.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Public Health Agency of Canada (Dementia Strategic Fund: Awareness Raising Initiatives), the Alzheimer Society of Canada (Alzheimer Society Research Program), and the Alzheimer Society of B.C. (Dementia Research Program).

ORCID iD

Kishore Seetharaman

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Protocol for A Mixed-Methods Study: Dementia-Inclusive Streets and Community Access,Participation,and Engagement (DemSCAPE)

Abstract

Keywords

Background

Explanation and Justification of Method

Sampling and Recruitment

Data Collection

Session 1: Sit-Down Interview 1

Session 2: Sit-Down Interview 2

Session 3: Walk-Along Interview

Session 4: Follow-Up Sit-Down Interview

Data Analysis

Ethical Considerations

Rigour

Conclusion and Implications

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iD

References