Abstract
Availability of community-based destinations and amenities can facilitate healthy aging by supporting older adults’ functional abilities and enabling their participation in society, especially for those experiencing declining cognitive abilities. This study used a survey tool called participation in ACTivities and places OUTside the Home for older adults, specifically designed to examine the out-of-home participation of older adults living with or without dementia, to collect data on specific places and activities that individuals participate in over time. Thirty cognitively intact participants and 29 participants living with dementia were recruited. The past/present net participation figures indicate that all destinations are likely to be abandoned by persons with dementia over time. The findings indicate that both groups of participants were most likely to abandon recreation and physical activity places, although a higher number of persons with dementia reported that they would likely abandon these places in the future than the cognitively intact participants. Participants with dementia indicated multiple en route and at destination challenges, as well as their coping strategies. This study adds to our understanding of the out-of-home places visited by persons living with and without dementia and the patterns of changes in those visits over time. The findings are useful for health and social care professionals, including occupational therapists, social workers, as well as family caregivers, in recognizing the relative importance of certain out-of-home places and activities over others and the challenges faced by persons with dementia in getting to those places. This knowledge can inform programme and service providers to develop targeted interventions to support continued engagement by older adults with dementia and cognitively intact older adults.
Introduction
There is a growing interest in examining the neighbourhood 1 environment for its role in influencing levels of social participation (i.e. involvement in a life situation (World Health Organization, 2001, p. 127)) and activities in later life (Chaudhury et al., 2016; Richard et al., 2009; Rosso et al., 2011; World Health Organization, 2015). The neighbourhood also acts as a source of emotional and practical support for persons living with dementia with opportunities for building social networks, maintaining independence and fostering a sense of attachment (Keady et al., 2012, Odzakovic et al., 2018). Availability of destinations and amenities in the community1 can facilitate healthy aging by supporting older adults’ functional abilities and enabling their participation in society, especially for those experiencing declining cognitive, mental, social and physical capacities (World Health Organization, 2015).
There will likely be a significant increase in the number of people with Alzheimer’s disease and other types of dementia as a result of the rapidly growing aging population. There will be an estimated 131.5 million people living with dementia worldwide by 2050, which is nearly three times the population estimate for 2017 (Alzheimer’s Disease International, 2015). The majority of people with dementia live in the community (e.g. estimated 70% people with dementia live in the community in the United States (Alzheimer’s Association, 2017) and estimated 55% of Canadians (65+) with dementia were living in the community (Alzheimer Society of Canada, 2010). It is known that cognitive impairment can significantly challenge older adults living with dementia in maintaining participation in activities and travelling to destinations in the community (Mitchell et al., 2004).
Consequently, dementia-friendly communities (DFC) initiatives have been geared towards augmenting community participation and social inclusion of people living with dementia (Buckner et al., 2019). This involves improving the capability of community-based services and businesses to adapt to the needs and preferences of people living with dementia, as well as creating dementia-specific leisure and recreational activities that promote community engagement (Buckner et al., 2019; Courtney-Pratt et al., 2018). DFCs are envisioned as communities that are affirming, empowering and supportive, cultivate dementia-positivity and promote equal rights and resources for people living with dementia and their families to be meaningfully engaged in the community (Lin & Lewis, 2015; Lin et al., 2014; Shannon & Bail, 2018). In promoting community participation and engagement, the ultimate goal of DFCs is to eliminate the stigma associated with dementia, raise awareness and help people living with dementia, who may be socially isolated, feel a sense of belonging to the community (Courtney-Pratt et al., 2018; Shannon & Bail, 2018).
One of the key characteristics of DFCs is the ease of access and navigation of outdoor areas and community destinations, thereby ensuring comfortable outdoor mobility (Shannon & Bail, 2018). Previous research indicates that older adults with early-stage dementia expressed concern about their outdoor mobility in the future and dreaded not being able to continue going outside due to the decrease in their functional abilities (Olsson et al., 2013). Older adults with dementia tend to face difficulties in finding their way around the neighbourhood environment due to the experience of memory loss and reduced ability to plan and make spatial decisions (Blackman et al., 2003; Sandberg et al., 2017). Spatial disorientation, a symptom of dementia, challenges older adults’ ability to meaningfully interpret their environment (Brittain et al., 2010; Olsson et al., 2013). These limitations, along with the fear of exposure, embarrassment or getting lost, compound the mobility issues (Blackman et al., 2003; Duggan et al., 2008). As a result, older adults with dementia have reported constraining their range of movement and confining themselves to home (Duggan et al., 2008; Lloyd & Stirling, 2015).
Environmental barriers that exacerbate outdoor mobility challenges for older adults with dementia are of two types: physical and cognitive. Physical barriers include inadequate street infrastructure, e.g. poor lighting, uneven sidewalks, inadequate seating, lack of restrooms (Blackman et al., 2007; Brittain et al., 2010; Brorsson et al., 2011). Cognitive barriers are often encountered in complex environments with high volumes of pedestrian and vehicular traffic, where executing independent mobility is contingent on the ability to simultaneously process high levels of stimuli from disparate sources. These circumstances can be quite challenging for older adults with dementia (Brorsson et al., 2011). Noisy and crowded environments, e.g. traffic intersections, shared pedestrian and bike lanes, public transit hubs with multiple signage, can compound the confusion and disorientation, and affect real and perceived safety of individuals with dementia (Phinney et al., 2016; Sandberg et al., 2017). The absence of a safe and supportive neighbourhood environment compromises the mobility levels of persons with dementia, limiting their independence, and ultimately diminishing their quality of life (Mitchell et al., 2004).
Individuals’ reduced outdoor mobility could potentially limit their participation in various social activities in the community. Older adults with dementia have reported feeling a sense of normality and continuity from being engaged in outdoor activities that have held meaning for them through their life course (Brorsson et al., 2011; Clarke et al., 2018; Duggan et al., 2008; Phinney et al., 2007). Participating in activities in the neighbourhood (e.g. neighbourhood walking group) offers older adults with dementia the opportunity for social contact and to realize their potential as social citizens (Phinney et al., 2016), thereby experiencing freedom from discrimination and being able to participate in life to the best of their abilities (Bartlett & O’Connor, 2010). Additionally, community participation reframes people living with dementia as ‘citizens who have something to contribute to their community (Phinney et al., 2016),’ which challenges the stigma associated with deficit-based narratives of dementia and therefore aligns strongly with the goals of the DFC movement. Maintaining outdoor mobility and participation in social activities allow older adults with dementia to experience freedom, autonomy, confidence and a greater sense of well-being (Duggan et al., 2008; Olsson et al., 2013). Outdoor activities such as walking in nature have been cited as a positive distraction with calming and restorative potential for both older adults with dementia as well as their caregivers (Duggan et al., 2008; Lloyd & Stirling, 2015; McDuff & Phinney, 2015; Silverman, 2017). As for preferred destinations in the community, participants with mild-to-moderate dementia frequented shops, post offices and parks, and avoided visiting friends or attending church, as they were perceived as socially-demanding activities (Mitchell & Burton, 2010). Notable examples of tailored recreational activities as part of DFC initiatives that support community participation among people living with dementia include arts and music programmes in local senior centres, visits to local art galleries and museums (Pigliautile et al., 2018), Alzheimer’s cafés and zoo walks (Lin et al., 2014). In a study examining the impact of driving cessation on outdoor mobility and participation, participants with dementia reported having challenges in accessing services and destinations, such as shopping centres, places of social and recreational activities and medical destinations, mainly because of not being able to drive and encountering difficulties using public transportation (Taylor & Tripodes, 2001). Participants with early-stage dementia have reported finding public transportation systems, especially public transit (e.g. subway), too complex and not user-friendly, with special emphasis on confusing layouts and ineffective signage (Sandberg et al., 2017). In a study on the experience of eating out, persons living with dementia indicated that going to a restaurant was perceived as a much-needed escape from their home-environment, providing them with a ‘different kind of atmosphere’ and ‘a change of pace’ (Cassolato et al., 2010, p. 112). Additionally, there is limited research on appropriate services for people with dementia and their caregivers in the community in terms of their appropriateness, accessibility and unmet needs (Górska et al., 2013; Innes et al., 2005).
The ability of older people with dementia to participate in activities in the neighbourhood is more likely to be supported in a familiar neighbourhood environment (Mitchell et al., 2004). Familiarity is especially perceived as a precursor for participation in outdoor activities (Brorsson et al., 2011). Maintaining familiarity with the neighbourhood environment tends to be a continuous process for people with dementia through sustained contact and access to places and activities in the outdoors (Brorsson et al., 2011). A familiar and supportive neighbourhood environment can enable older adults living with dementia in remaining mobile, socially active and engaged in their community. Conversely, the loss of familiarity with one’s physical–social environment results in the loss of community participation, which has been described as a ‘shrinking world’ as the severity of dementia grows with time (Duggan et al., 2008). Thus not having important destinations, such as grocery stores and doctor’s clinics located close to one’s home and within the neighbourhood can severely challenge the ability of persons with dementia to meet their daily needs (Shoval et al., 2011). Although previous research indicates that older adults with dementia tend to visit fewer places in the community and are more likely to give up cognitively demanding instrumental activities of daily living (ADLs), such as banking (Wettstein et al., 2015), there is a lack of research that examines their loss of participation in places and activities in relation to specific destinations in the neighbourhood.
Additionally, the potential differences in community activity patterns between older adults with and without dementia and the associated influences on individual sense of well-being are not well explored. There is a paucity of empirical literature that explores the nature and levels of community participation among older adults with dementia. This could be owing to, in part, the lack of a systematic approach to studying community participation among people with dementia. Past tools developed to study participation levels of older adults with dementia (e.g. Kitchen Tasks Assessment, Disability Assessment for Dementia) are limited to ADLs conducted within the confines of home and do not include outdoor activities, and rely largely on proxy responses by caregiver or professionals (Baum & Edwards, 1993; Gélinas et al., 1999).
The present study attempts to address this gap in the literature by using a survey tool called participation in ACTivities and places OUTside the Home for older adults (ACT-OUT), specifically designed to examine the out-of-home participation of older adults living with or without dementia, and collecting data regarding specific places and activities in which individuals participate over time (Margot-Cattin et al., 2019). This instrument consists of questions pertaining to places that participants visit and factors that influence their participation in these places (e.g. transportation, familiarity, risk perception) (Margot-Cattin et al., 2019). It is important to expand the evidence-base in this under-researched area, as the population of community-dwelling older adults with dementia is much greater than those living in institutional settings (Alzheimer Society of Canada, 2010; Alzheimer’s Association, 2017). The findings from this study will help advance the current knowledge in this area and contribute towards generating a much-needed evidence-base. These findings could also inform and advance the growing public policy, programme and research movement to develop DFCs. We acknowledge that while there may be contextual (e.g. socio-political, geographical, cultural) differences between the North American context and other regions in the world, which have several prominent DFC movements, there is value in the lessons learned about the patterns of activities and participation in the present study to inform public policies and programmes worldwide. Needless to say, the findings and implications of this study would need to be interpreted in the local/regional social, geographical and environmental contexts for understanding their relevance. The focus of this study is to identify patterns of visits to neighbourhood destinations and activities, and perceptions of physical and cognitive challenges associated with out-of-home mobility and participation, using the ACT-OUT survey tool.
Methods
Participant enrolment
Participant sampling for older adults without dementia occurred through Riverview Seniors Centre in Vancouver, Canada. The study was advertised in the Centre’s monthly newsletter and through word of mouth. The participants with dementia were recruited through a dementia screening centre in Vancouver, Canada. For the purposes of optimal recruitment, this study did not discriminate between the various types of dementia. The ability of people with dementia to provide informed consent is a central ethical consideration in research as the condition of dementia can impair an individual’s capacity to make decisions (Agronin, 2014; Moore & Hollett, 2003). In this study, potential participants with dementia were informed on this study the designated staff member at the Centre for Brain Health. Individuals who gave verbal consent for permission to be contacted by our team’s Research Assistants (RAs) were contacted by telephone to explain the study purpose and expectations. Those who agreed to participate in the interview were scheduled for an interview date, time and location, based on her/his convenience. On the day of the interview, written informed consent was obtained from the participants or substitute decision maker (typically a family member). We also asked for oral assent to participate from the participants with dementia, and audio recorded the oral consent. The RAs who conducted the interviews were graduate students in the Department of Gerontology at Simon Fraser University, who were trained in conducting interviews with participants with dementia. Participants in both groups were offered $40 as a token of appreciation for their contribution. This study was approved by the Office of Research Ethics at Simon Fraser University.
Inclusion criteria and interview considerations
RAs conducted the Mini-Mental State Examination (MMSE) with all older adults prior to the administration of the ACT-OUT survey. Attaining a minimum score of 24 on the MMSE was considered as the cut-off for older adults to be considered as participants without dementia in this study. The Centre for Brain Health had filtered their databases for participants with dementia with a score ≥10 to be included in the study. For participants’ comfort, participants with dementia were requested to bring a companion (e.g. spouse, care partner, adult child) during the interview. Participants were required to be able to communicate in English and were excluded if they had any mobility disability that significantly impacted their ability to be mobile in the community.
The two RAs who conducted the interviews were knowledgeable about various communication challenges in the condition of dementia and how to adopt effective strategies to optimize the responses. The strategies included: (i) appropriate interview setting to ensure confidentiality and comfort; (ii) taking time to build rapport with the person; (iii) conducting the interview at an appropriate pace; (iv) restructuring the question if needed; (v) paying attention to lapse in concentration and possible distractions, difficulty in finding words, and possible anxiety; and (vi) empathetic attitude and an ability to listen attentively (Cotrell & Schulz, 1993; Cridland et al., 2016; Harman & Clare, 2006). All participants were informed that their participation in the study was voluntary and that they were free to opt out of the study if need be.
Demographics
The two groups ranged between 54 and 84 years of age. Thirty participants without dementia (20 were female) were recruited. Majority of them (37%) were widowed; 23% were separated from their partners; 20% were married and 17% never married; and 90% were retired. Overall, the group either graduated from college (37%) or had post-secondary education (27%). There were 29 participants with dementia which included 13 females and 16 males; 76% of participants with dementia were married; 7% was widowed and another 7% never married; 28% of participants with dementia were college grads; 24% had some college education; 17% graduated from high school; and 14% had some level of post-secondary education. The majority (83%) of participants with dementia were retired.
Outcome measures
ACT-OUT is a well-validated survey tool designed to collect quantitative data on participation in place-based activities outside of the home for those living with mild to moderate dementia in the community. The tool is designed as a questionnaire divided into three parts (User’s Guide: ACT-OUT, 2016). Part one collects data on the various neighbourhood places participants visit for various activities (Margot-Cattin et al., 2019; User’s Guide: ACT-OUT, 2016). Part two of the survey is based on two sets of identical questions regarding neighbourhood places where the participant indicates: (a) there will be no change in their frequency of visits after the diagnosis, and (b) places where they feel there has been (or anticipate there will be) a change frequency of visits (Margot-Cattin et al., 2019; User’s Guide: ACT-OUT). Part three asks general questions about attitudes towards risk-taking, perceived life satisfaction and potential participant concerns while they are out and about (Margot-Cattin et al., 2019; User’s Guide: ACT-OUT). This survey takes 25–30 minutes to complete and was conducted in a location of the participant’s choice (e.g. participant’s home, local library, community centre, cafe) by a trained RA.
Data analysis
Percent participation in each place and p values were determined by running one sample t-tests on IBM SPSS Statistics 24 within both groups (with and without dementia) of participants for past, present and future to see if community participation changed due to cognitive challenges over time (i.e. across the dementia trajectory). As mentioned above, the ACT-OUT tool is designed to collect data that provides a temporal perspective on community participation among persons with dementia. To evaluate if destinations were abandoned or retained, past participation counts were subtracted from present participation for each destination and compared between the two groups. The responses to open-ended questions were analysed by looking for salient, substantive and recurring themes and issues, using qualitative coding techniques (Patton, 2015). The scope of the qualitative data was limited to conduct systematic qualitative data analysis.
Results
The following findings include the various destinations visited by participants from both groups under four domains: (i) consumer, administrative and self-care places; (ii) medical care places; (iii) social, cultural and spiritual places; and (iv) recreational and physical activity places, as well as reasons for visiting them. Table 1 summarizes the descriptive statistics for participation rates in activities and places across the three time points (i.e. past, present, future) for participants from both groups. The different places that participants retained and abandoned are also described. Challenges encountered by participant’s en-route and at different destinations are discussed at the end.
Percent difference in participation in places within the groups for past (B), present (P) and future (F) for older adults without dementia and participants with dementia.
The following sections are based on the descriptive statistics reported in Table 1. Relevant responses to the open-ended questions in the ACT-OUT survey are also reported in these sections to supplement findings related to the descriptive statistics in Table 1.
A. Consumer, administration and self-care places
A:1. Participation of older adults without dementia in consumer, administration and self-care places
Participants without dementia actively attended all seven places listed in this category throughout the week. One of the most well-attended places was the supermarket. Nine out of 30 participants cited competitive pricing as the reason for shopping at their supermarket of choice. Other reasons that participants considered to be facilitators for going to their supermarket of choice were proximity (preferably at a walkable distance) to their home, extended store hours, a range of produce on sale and friendly nature of store employees. Besides shopping for produce, participants also reported going to the supermarket to meet friends for coffee and getting some exercise into their routine by walking to the store. One participant stated that his choice of supermarket was informed more by its proximity to his home, and less so by the pricing of products. This indicated that participants without dementia would potentially be willing to pay a little more for the convenience of walking to a supermarket nearby. A participant who identified as Asian reported needing to go to the local Chinese store to buy produce that was specific to Chinese cuisine, but also because of the relatively lower prices of goods.
The other set of places that invited maximum participation included the bank and post office. Participants without dementia mentioned that familiarity established through friendly staff interaction was a factor that motivated their sustained contact with their local bank. The pharmacy was also an actively attended place. A participant mentioned the low service fee and 24-hour service as positive factors that informed her decision to get her prescriptions filled at her local pharmacy. Interaction with friendly pharmacy staff was also cited as a facilitator for participation. Participation rates among participants without dementia for most places at all three time-points were over 80%, with the exception of administration places (e.g. passport office, city hall, revenue offices). A statistically significant difference (p = 0.043) was noted between present-day and future participation rates in administrative places, i.e. participation was expected to decrease with time. There was no statistically significant difference in participation across the three time-points for any of the other places in this category for participants without dementia.
A:2. Participation of participants with dementia in consumer, administration and self-care places
Participants with dementia claimed that their visits in all seven places were lower in the past than at present; however, the participation rate was likely to decrease in the future. The hairdresser salon was the only place for which there were no statistically significant differences between the past/present or present/future participation rates. Four out of 29 participants mentioned that the reason they continued to go to the salon was due to a sense of familiarity with the place and the staff and satisfaction with the service they received. Three other participants mentioned the close proximity to their homes as a reason for visiting their salon of choice. Fifty-two percent of participants with dementia reported going to banks/post offices in the past. Ninety-three percent indicated that they proactively visit banks/post offices (p = 0.000) at present, yet, only 69% of them saw themselves maintaining their participation in the future (p = 0.011). Participants mentioned that a sense of familiarity with the place and the staff was a positive factor for their decision to visit their banks/post offices of choice.
Ninety-seven percent of participants with dementia reported going to the mall/supermarket at present, which was a significant increase from past participation rates (p = 0.043). Participants reported going to supermarkets that they were familiar with and conveniently located in close proximity to their homes. Some participants also reported going to the mall to spend leisure time and browse through products, while getting in some physical activity from walking around. However, the participation rate was likely to decrease in the future (p = 0.022), with only 76% of the participants reporting that they would keep going to these places in the future. Sixty-nine percent of participants with dementia recalled going to the pharmacy in the past, whereas 97% reported that they continue to go to the store at present; the increase in participation being statistically significant (p = 0.006). Participants reported that they went to the pharmacy of their choice for a host of reasons, including a sense of familiarity with the place and the staff, competitive pricing, high-quality service and the location being in close proximity to their homes. The participation rate was likely to decrease in the future (p = 0.022) with 79% of participants reporting that they would continue going to the pharmacy.
B. Medical care places
B:1. Participation of participants without dementia in medical care places
The responses of participants without dementia did not suggest significant differences in their attendance of medical care places across the three time points. They reported the least participation in day care activities, none of whom had attended day care in the past or present. Less than 40% of participants without dementia consistently attended therapy over time. One participant without dementia attributed her decision to continue going to her therapist to her satisfaction with the services offered. Over 90% of all participants without dementia reported consistently going to the doctor’s office over time. The oft-cited reasons for continuing to visit their doctor of choice included the reputation of the doctor, rapport and ease of communication. Other participants also mentioned their familiarity with their doctors as a central reason for continuing to consult them. One participant mentioned the proximity of the doctor’s office to his house as a reason for his decision to maintain participation over time. Over 90% of participants also reported maintaining their attendance at the dentist’s office over time. While close proximity to participants’ homes was cited as a facilitator for attendance, participants’ familiarity with the place and staff also seemed to contribute to their decision to visit their dentist of choice. Additionally, low-income participants mentioned that the availability of subsidies enabled them to continue going to the dentist’s office and avail of their services.
B:2. Participation of participants with dementia in medical care places
Participants with dementia showed statistically significant changes in participation patterns in all five medical care places. Participation in medical care places showed an increase from past to present, as more participants with dementia reported going to medical care places in the present than in the past. Similar to the previous domain, participants claimed that their participation in four out of five places (with the exception of day care) was lower in the past than at present and was likely to decrease in the future. These differences were statistically significant. The majority of participants with dementia reported visiting the doctor’s and dentist’s offices. The past-to-present increase was higher for hospital/healthcare centres (48% increase; p = 0.000) than doctor’s and dentist’s offices (14% increase; p = 0.043). Reasons cited by participants with dementia for visiting their doctor’s office included, a sense of familiarity with the place and staff at the office, close relationship and rapport with their doctor, quality of care and service offered, as well as the close proximity of the doctor’s office to their home.
With regard to visiting the dentist’s office, several participants attributed their decision to maintain participation to a sense of familiarity experienced with their dentist; with some participants highlighting the value of their dentists being friendly and helpful, and having a rapport with them. Some participants were impressed with the quality of care they received at their dentist’s office which motivated them to continue going to them subsequently. On the other hand, one person with dementia mentioned that he visited the dentist only when in need of cleaning or filling and did not go for regular visits since the services were expensive and not covered by his insurance plan. More participants with dementia reported going to day care in the future than in the present, with a 27% difference (p = 0.001). Participants attributed their attendance of day care to feeling happy and enjoying the activity, as well as gaining physical activity through exercise. Some participants also cited the close proximity of the day care centre to their homes as facilitators of participation.
C. Social, cultural and spiritual places
C:1. Participation of participants without dementia in social, cultural and spiritual places
There were no statistically significant differences in participation over time for participants without dementia in five out of six places. However, a statistical difference (p = 0.000) was observed in the past–present attendance of cemetery or memorial places, wherein 50% of participants without dementia reported visiting these places presently, compared to the 23% that they used to attend in the past. All participants without dementia reported maintaining their participation in entertainment and cultural places over time. Multiple participants identified the library as one of the places they visited as it was near their homes and also in close proximity to other destinations like supermarkets. Other participants mentioned attending the women’s club to have the opportunity to meet friends, as well as the theatre as it was considered to be an inexpensive option for leisure activity. Over 90% of participants without dementia reported maintaining their visits to restaurants over time for reasons including, the close proximity of the restaurant to their home, the quality of service and food at the restaurant, the social aspect of meeting with friends over food and drink and benefiting from physical activity by walking to the restaurant. A similar proportion of participants without dementias reported maintaining their participation in the senior centre as it was close by and offered good programmes. Around 60% of participants without dementia reported maintaining their attendance of places of worship over time. Some participants mentioned that the church they visited was located near their homes. One participant reported that he went to church also to attend planning committee meetings for older adults.
C:2. Participation of participants with dementia in social, cultural and spiritual places
Participants with dementia showed a similar trend in categories ‘Consumer, administration and self-care places’ and ‘Medical care places’, i.e. their participation in some social, cultural or spiritual places was lower in the past than at present and was likely to decrease in the future. Places that reflected this trend included buildings of worship, cemeteries and places of entertainment. The most statistically significant increases in past-to-present participation were found in relation to senior centres or social clubs, as well as cemeteries or memorial places (p = 0.000). Some participants with dementia reported going to the church of their choice due to its close proximity to their home, thereby eliminating the need for using transit, as well as a sense of familiarity built over time at their place of worship. With regard to entertainment and cultural places, a few participants mentioned going to the library as it was close to their homes, while others reported going to the theatre, also because of its proximity to their homes. However, participants’ responses reflected that there would likely be no change in present–future participation rates for visits to friends/family’s homes, restaurants or senior centres. While some participants with dementia reported visiting their family and friends not only to spend time with them but also to offer their help as needed, other participants mentioned not visiting their friends because their homes were located far away and participants were not able to drive anymore or discouraged from doing so by their family members. A participant with dementia cited the social aspect of meeting and interacting with others at senior centres as a facilitator for maintaining their participation over time.
D. Recreational and physical activity places
D:1. Participation of participants without dementia in recreational and physical activity places
The responses of participants without dementia reflected statistically significant differences in participation over time for two out of seven places in this domain. Participation rates in backyard garden activity showed a greater increase over time from the past to present (27%; p = 0.001) than from the present to the future (7%; p = 0.012). An increase in participation from the past to the present (17%; p = 0.023) was also found for visits to cottage or summerhouse. Over 90% of participants without dementia expected to maintain their participation in parks and community gardens over time. Participants expressed a strong sense of ownership towards community gardens as the main driver for participation, while parks were found to facilitate physical activity through exercise and provide opportunities for social engagement. Participants also mentioned that they went to their parks of choice because of their familiarity and close proximity to their homes. Nearly all participants without dementia also reported maintaining their physical and recreational activities within their neighbourhood. One participant reported that it was convenient to walk in their neighbourhood as they were familiar with their surroundings and was considered to be the most easily accessed outdoor area when other venues were no longer accessible to them. Over 75% of participants reported going to a sports facility for their recreational and physical activity needs, e.g. swimming. A frequently cited reason for maintaining their participation in these spaces was their close proximity to participants’ homes. However, one participant reported that her visits to the sports facility had decreased due to her partner’s health issues. Ninety percent of all participants without dementia reported going to the Skytrain station for their transit needs as it was located close to their homes.
D:2. Participation of participants with dementia in recreational and physical activity places
The responses of participants with dementia indicated statistically significant changes in participation over time for six out of seven places in this domain. For all but two places (neighbourhood and sports facility), the participation of participants with dementia in places of recreational and physical activities was lower in the past than at present and was likely to decrease in the future. The most statistically significant increases in past-to-present participation were found in relation to cottages, summer houses or chalets, as well as sports facilities (p = 0.000). An 18% increase from the past to present (p = 0.011) was seen in the group’s participation rates in parks and community gardens. Participants attributed their visits to their park of choice to the close proximity of the park to their home, as well as the opportunity to see their friends who also visited the park. A 28% increase from the past to present (p = 0.003) was seen for visits to a transportation centre, while there was a 21% decrease in participation rates from the present to future (p = 0.022). Participants with dementia reported going to the bus stop, as well as the Skytrain station, as they were near their homes.
Places retained and abandoned
Table 2 summarizes the descriptive statistics for participation rates in activities and places across the three time points (i.e. past, present and future) for both participants without dementia and participants with dementia.
Evaluation of destinations abandoned or retained between participants without dementia and participants with dementia.
The past/present net participation figures indicate that all destinations are likely to be abandoned by participants with dementia over time. Both participants without dementia and participants with dementia were most likely to abandon recreation and physical activity places, although a greater number of participants with dementia reported that they would likely abandon these places in the future than participants without dementia. Medical care places were the next most likely domain of destinations to be abandoned by participants with dementia. However, this domain had the highest retention figures for participants without dementia. Destinations within the domains of social, cultural and spiritual places, as well as consumer, administrative and self-care places are expected to be more strongly abandoned by participants with dementia than participants without dementia.
En-route and destination-related challenges and coping strategies
En-route challenges
With regard to visiting the consumer, administrative and self-care places as well as medical care places, both participants without dementia and participants with dementia mentioned traffic as the primary issue that they needed to be careful about on their journey. Specific traffic-related barriers cited included: (i) lack of crossing lights which exacerbated the challenges related to crossing streets; (ii) high volumes of vehicular traffic as deterrents to crossing the street, especially at intersections; (iii) drivers’ non-adherence to traffic rules; and (iv) negotiating bicyclists and skateboarders. Participants, especially those with vision problems, reported the need to take extra precaution at steps leading to their home entrance before stepping onto the streets. Barriers encountered along the sidewalk that posed tripping hazard included: (i) obstructions (e.g. sandwich boards, construction work, overgrown tree roots); (ii) uneven and/or slippery surfaces (e.g. ice during winter, rains); (iii) curbs; (iv) cracked pavements; and (v) insufficient lighting, especially at night when it was considered unsafe.
Participants with dementia complained of crowding of pedestrians on sidewalks as a barrier to their mobility. Alleyways were specifically mentioned by some participants with dementia as spaces they needed to be careful about while travelling to their destination. Participants who used public transit to get to these destinations mentioned (i) needing to pay attention so as to get on the right bus; (ii) being mindful of crowds of passengers on-board; and (iii) ensuring not to miss their stop while on the subway train. Some participants with dementia used specialized transportation services that were tailored for participants with physical or cognitive disabilities.
Orientation and wayfinding were a primary concern for participants with dementia. One participant said, ‘my biggest fear is not my physical ability but that I can’t orient myself.’ Being guided by a caregiver was cited as a necessity by participants with dementia so as to not get lost along the way to their destination. Participants with dementia felt safe and confident when they were accompanied by caregivers. One participant attributed the risk of getting lost due to construction work happening along the route to his destination, therefore challenging him in planning his route of travel. Caregivers’ support was essential for participants with dementia in such situations and especially while travelling to destinations that were located far away from their residence since they had stopped driving. On the contrary, participants without dementia were mostly accompanied by friends or family members mostly during visits to recreational and physical activity places for companionship, socializing and joining in the activity.
Challenges at destinations for participants without dementia
Several participants without dementia reported needing to negotiate stacks of boxes, shopping carts and crowds of people while at small grocery stores, as well as supermarkets. The main fear among these participants was to not bump into people or obstacles and get knocked over. Participants also specifically mentioned the importance of negotiating other older adults who used mobility aids (e.g. walkers, canes), especially in small and narrow spaces in supermarkets. Some participants without dementia also reported their concern of being robbed, losing their credit/debit cards or bills, thus necessitating the need to be alert and aware of their surroundings. Some participants without dementia also reported going to supermarkets/grocery stores along with a friend or partner mostly to keep each other company, as well as seek help carrying bags of groceries.
At medical care places, participants without dementia reported a few environmental barriers that they needed to be careful about. One participant who went to a local hospital for physiotherapy found the space to be very busy and had to negotiate supply carts, as well as patients being wheeled in stretchers and wheelchairs. While steep flights of stairs and lack of elevators were cited as barriers, having all spaces concentrated on a single floor (preferably the ground floor) was regarded as a facilitator by participants without dementia who visited the dental clinic.
At social, cultural and spiritual places, such as the seniors’ centre, restaurant and church, participants without dementia reported having to exercise caution while interacting with others so as to not say/do something offensive and maintain etiquette (e.g. keeping their space clean while eating or drinking, using the restroom sparingly, not sitting in someone else’s seat). Environmental factors, including steps and lack of elevator, as well as other factors, such as crowding of people, were cited as barriers to accessibility in these venues.
Challenges at destinations for participants with dementia
Some participants with dementia mentioned the need to take additional precautions to keep their money and belongings safe while at the grocery store, supermarket or mall, due to a risk of being ‘pickpocketed.’ One participant mentioned coping with the challenge of shopping alone by asking store employees for help (e.g. needing help to read signs or labels). Another participant coped with difficulties encountered at the check-out counter by seeking his care partner’s assistance (e.g. remembering his credit/debit card code). The majority of participants with dementia went to the grocery store/supermarket or bank with their care partner (e.g. spouse, child or sibling) mainly because they depended on them to drive them to and fro, as well as to assist with shopping and banking. A participant with dementia who visited the local city hall to pay his property taxes mentioned needing to be careful while moving through poorly lit/dark spaces inside the venue.
Most participants with dementia who visited their doctor or dentist depended on their caregiver (e.g. spouse, child and sibling) for transportation and to help them attend their appointments. Some participants with dementia also reported the need to be accompanied by their caregiver on visits to medical care places to make sure they did not ‘drift off somewhere’ and that they were ‘going in the right direction.’ Participants with dementia also coordinated their medical appointments with their care-partners’ (spouse) such that they were both seen by their doctor or dentist on the same day. Those who visited day care centres also reported needing to be aware of vehicles in the parking lot and not expose themselves to oncoming traffic.
During their visits to social, cultural and spiritual places, such as the theatre, restaurants and friends’ houses, participants with dementia mentioned the need to take precautions while climbing stairs so as to not trip and fall, as well as negotiate crowded spaces. Besides being tasked with driving and accompanying participants with dementia, care partners also enjoyed visiting these destinations, e.g. restaurants, libraries, churches, concert halls and theatres.
Discussion
This study contributes to our understanding of the out-of-home places visited by persons living with and without dementia and the patterns of changes in those visits over time. Among participants with dementia, a general trend of participation was observed across all domains of destinations, i.e. an increase from past to present and a decrease from present to future participation rates. This is consistent with previous research that suggests that participants with dementia are likely to visit fewer places in the community and give up cognitively or socially demanding activities (Mitchell & Burton, 2010; Wettstein et al., 2015). However, there was no such discernible trend in participation rates among participants without dementia. This relates to a previous study using the ACT-OUT tool where persons without dementia were found to maintain higher community participation for all places than persons with dementia (Gaber et al., 2019). The most statistically significant increases in past-to-present participation found in the various domains were seen in relation to: (i) banks or post offices, as well as administration places (domain A: consumer, administrative and self-care places); (ii) hospital or healthcare centres (domain B: medical care places); (iii) senior centres or social clubs, as well as cemeteries or memorial places (domain C: social, cultural and spiritual places); and (iv) cottage, summerhouse or chalet, as well as a sport facility (domain D: recreational and physical activities places). In relation to patterns of retention or abandonment of places and activities, participants without dementia were more likely to retain a greater number of places over time than participants with dementia. Participants without dementia were more likely to abandon places of recreation and physical activity, followed by social, cultural and spiritual places in the future. All destinations are likely to be abandoned by participants with dementia over time. Among participants with dementia, recreation and physical activity places were most likely to be abandoned, followed by medical care places, and finally consumer places and social/cultural places. This is consistent with findings from previous research that also suggests that places of recreation and physical activity are most likely to be abandoned by persons living with dementia (Gaber et al., 2019). The patterns of abandonment of places over time observed across all four domains among participants with dementia is consistent with the notion that ‘the local landscape is a shifting territory for people with dementia (Keady et al., 2012, p. 160)’ and adds to our understanding of the shrinking of familiar outdoor areas with the progression of dementia (Duggan et al., 2008). It is known that the outdoor environment holds special importance for people living with dementia due to the connections that it affords with neighbours, local businesses and community-based organizations (Keady et al., 2012). This study not only reiterates the need for targeted DFC initiatives to help prevent people’s abandonment of community destinations over time support but also demonstrates how the ACT-OUT survey tool can play a role in identifying those destinations in a given community context that need to be prioritized to improve community participation among people living with dementia.
Facilitators for participation in different destinations for both participants without dementia and participants with dementia include (i) familiarity with the destination and the staff who work there; (ii) destination’s location in close proximity to homes; and (iii) quality of service offered at destinations. These findings are consistent with previous research that suggests that being familiar with the physical–social environment of the community (Shannon & Bail, 2018) and having important destinations near one’s home (Shoval et al., 2011) are important facilitators to community participation for people living with dementia. Particularly, familiarity with the people and places in the community can help people living with dementia seek support and be assisted when in need of guidance or reassurance (Shannon & Bail, 2018). On the other hand, physical and cognitive challenges were experienced en-route to destinations by both groups of participants due to barriers associated with (i) issues at crosswalks (e.g. lack of crossing lights, high volumes of vehicular traffic and drivers’ non-adherence to traffic rules); (ii) issues at sidewalks (e.g. obstructions, such as signs or construction work, uneven or slippery surfaces and poorly designed curbs); and (iii) difficulties in performing orientation, wayfinding and route planning due to dementia-related symptoms and environmental barriers. Both groups also reported challenges at destinations due to (i) obstructions (e.g. boxes, shopping carts), as well as crowds of people at consumer places; (ii) fear of being robbed or losing one’s valued possessions; (iii) lack of accessible options (e.g. elevators along with staircases); and (iv) poorly lit indoor spaces. The response related to wayfinding difficulties is also supported by previous research that suggests the lack of legible street infrastructure (e.g. clear layout, distinct signage) as key physical environmental barriers to community participation among people living with dementia and an important focus area to be addressed as part of creating DFC (Shannon & Bail, 2018).
Limitations
All participants without dementia lived in a relatively defined geographic area; hence, the responses to places visited in the past and currently being visited were quite similar. Many of them lived in the same postal codes, went to the same places and have addressed similar issues. On the other hand, participants with dementia lived in diverse neighbourhoods within the metropolitan area. Therefore, the findings reveal a greater variety of types of places visited by this group and reasons attributed to participation in activities in these destinations.
In a few interviews, interviewers noticed a level of discomfort in participants with dementia if they were alone. The presence of a companion was suggested, but not required, during the time of the interview. However, all participants who had companions with them during the interviews relied on their companion to help them answer the questions. Some participants with dementia also sought confirmation from their caregiver due to disparity between their respective responses. Often times, the companion would hint or guide the participant to the correct answer because they could not remember. This contributed to some missing data for participants with dementia (we did not record answers that were bluntly stated by the companion). Participants’ cognitive abilities also limited their ability to answer.
Conclusion
Given the limited existing empirical research in this area, the study findings help us identify community destinations and recognize the subjective reasons beyond the changes (or lack of) in visits. The validated ACT-OUT tool was useful to generate the data on out-of-home participation and helped identify obstacles and facilitators in going to the places. The findings of this study will be useful for various professionals including occupational therapists, social workers as well as family caregivers in recognizing the relative importance of certain out-of-home places and activities over others, and the challenges faced by persons with dementia in getting to those places in developing targeted interventions to support their continued engagement. The destinations that are more likely to be abandoned by persons with dementia (e.g. medical care facilities, consumer places, social/cultural activity locations) could be places for targeted interventions in making communities dementia-friendly. Also, the physical planning of neighbourhoods and cities can take into consideration the need to identify appropriate design of dementia-friendly streetscapes, e.g. crosswalk design, support in wayfinding. This study contributes to our currently limited understanding of how people with dementia experience everyday life in the neighbourhood (Keady et al., 2012; ) by identifying changes in their visits to destinations over time and the issues they experience en-route to or at these destinations. However, there is a need for more research to have a more in-depth understanding of the challenges of navigation in the neighbourhood, coping strategies and social–environmental supports that might help people with dementia maintain their mobility and social participation. Future research could adopt qualitative research methods or mixed-methods to gain an in-depth understanding of the complexities of navigating in the neighbourhood environment and the subjective meaning of participation and activities in the various places for people with and without dementia. Facilitating outdoor access and community participation constitutes an important part of the DFC movement and has wide-ranging implications for the rights and citizenship of people living with dementia. Supporting people living with dementia to augment and maintain their engagement in the community is an important step towards fighting the stigma and prejudice associated with dementia. In addition to augmenting the quality of life of people living with dementia, facilitating community participation would ensure that people living with dementia are seen and heard by all in different spaces in the community, thus paving the way forward for the normalization of dementia in the society.
Footnotes
Acknowledgements
We gratefully acknowledge funding support from the Social Science Humanities Research Council (SSHRC) Institutional Grant and the dedicated work of project Research Assistant Shagufta Saddiq and Riley Malvern. We also gratefully acknowledge support from the Centre for Brain Health, University of British Columbia and the West End Seniors' Network, Vancouver in recruitment of the study participants.
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) received no financial support for the research, authorship, and/or publication of this article.
