Exploring the Impacts of COVID-19 Public Health Measures on Community-Dwelling People Living With Dementia and Their Family Caregivers: A Longitudinal, Qualitative Study.

Since the onset of the COVID-19 pandemic, community-dwelling people living with dementia and their family caregivers have experienced many challenges. The unanticipated consequences of public health measures have impacted these families in a myriad of ways. In this interpretive policy analysis, which used a longitudinal, qualitative methodology, we purposively recruited 12 families in British Columbia, Canada, to explore the impacts of pandemic public health measures over time. Semi-structured interviews were conducted every 3 months and participants completed diary entries. Twenty-eight interviews and 34 diary entries were thematically analyzed. The findings explore ways that families adopted and adapted to public health measures, loss of supports, both formal and informal, and the subsequent consequences for their mental and physical well-being. Within the ongoing context of the pandemic, as well as potential future wide-spread emergencies, it is imperative that programs and supports are restarted and maintained to avoid further harm to these families.

Conceptualizing citizenship in dementia: A scoping review of the literature.

Citizenship has provided an important conceptual framework in dementia research and practice over the past fifteen years. To date, there has been no attempt to synthesize the multiple perspectives that have arisen in this literature. The purpose of this paper is to explore, reflect on, and contrast, the key concepts and trends in the citizenship discourse as it relates to people with dementia. Using a scoping review methodology, forty-nine articles were identified for review. Despite the use of different descriptors, thematic analysis revealed four core themes underpinning citizenship discourse: 1) the relationality of citizenship; 2) facilitated agency and autonomy; 3) attention to stigma, discrimination and exclusion; and 4) recognition of the possibilities of identity and growth. Overall, this scoping review found a major emphasis on expanding definitions of agency and autonomy to render citizenship unconditional and inclusive of the diverse life experiences of people living with dementia. Notably, there is recognition that a more intersectional lens for embedding the subjective experience within a broader socio-political context is needed. Whilst the adoption of a citizenship lens in dementia research and practice has had real-world implications for policy and research, its exploration and use continue to be led by academics, highlighting the importance that future research involve input form people with dementia.

Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia.

There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.

Out-of-home participation among people living with dementia: A study in four countries.

Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada (n = 29), Sweden (n = 35), Switzerland (n = 35) and the UK (n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 (Median) places out of a possible total of 24, and they had abandoned 5 (Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher's exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist's office, Cemetery, Garden, and Forest (Fisher's exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.

Providing Accessible Recreation Outdoors-User-Driven Research on Standards (PARCOURS): Protocol for a Multiphase Study.

BACKGROUND: Canada's national parks are world-renowned. However, despite recent attempts to improve access, many are not accessible to people with disabilities. With the advent of provincial and federal legislation, standards are being developed to assist with the design and management of parks. OBJECTIVE: The overarching objective of this study is to inform accessibility standards for federal parks that meet the needs of all park visitors, regardless of ability. The specific objectives of this study are to identify park accessibility standards that exist internationally, identify the accessibility challenges that people with disabilities face in park environments, and prioritize and recommend accessibility standards for national parks. METHODS: A 3-phase approach will be used to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. The second phase will include objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, as well as mobile interviews with 24 diverse participants in each region regarding their experiences of and recommendations for improving the park's accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. RESULTS: We expect to find gaps in existing standards that do not account for the diverse range of accessibility requirements that people with disabilities have for visiting parks. We also expect to find that existing standards, on their own, may not be enough to ensure equitable access to all the experiences and amenities that parks have to offer. Development of subsequent guidelines and best practices may be necessary to address complex scenarios for which standards may not be the best approach to ensuring accessibility. CONCLUSIONS: The participatory and mixed methods approaches used in this study will provide rich insights for developing accessible park standards that consider the diverse needs of people with disabilities. The findings will also support the development or enhancement of park standards at all levels of government. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33611.

Contextualizing Innovative Housing Models and Services Within the Age-Friendly Communities Framework.

This article compares and contrasts the characteristics of 3 models of housing and services for older adults, cohousing, Naturally Occurring Retirement Community Supportive Services Program, and villages, and links them to the domains of the age-friendly communities (AFCs) framework, specifically (a) services, supports, and information; (b) respect, inclusion, and diversity; (c) social and civic participation; and (d) affordability. We discuss key barriers and challenges of these models with respect to the AFC domains, as well as implementation and sustainability. Consideration of these models in age-friendly housing policy and practice could help expand and diversify the choices in the housing and services continuum. This aligns with AFC's emphasis on the need for housing and services responsive to older adults' diverse health and social needs, provides options that balance autonomy, choice, and support, and emphasizes older adults' participation and involvement in tailoring these options.

Best Practices in Dementia Care: A Review of the Grey Literature on Guidelines for Staffing and Physical Environment in Long-Term Care.

In its first national strategy on dementia, the Government of Canada has highlighted the need to improve quality of care for individuals living with dementia, with emphasis on following best practices and evidence in care delivery and providing care staff access to education and training. It is also known that the design of the physical environment of care homes is integral to the care experience of individuals living with dementia. Therefore, this study aims to identify the best national and international practices implemented in care homes for people living with dementia in: (1) education, training, staffing, and care practices; and (2) environmental design and physical infrastructure, through the review of relevant grey literature. This article highlights key recommendations for improving the quality of care for residents living with dementia in care homes, such as: (1) facilitating translation of training into practice, (2) maintaining consistent staffing levels, and (3) designing care homes to facilitate wayfinding, accessibility, safety, comfort, appropriate sensory stimulation, familiarity, and homelikeness. The findings from this review are expected to inform the development of guidelines for a provincial dementia-friendly care home designation program and various advocacy efforts to help achieve the objectives of the national strategy on dementia.

Community participation in activities and places among older adults with and without dementia.

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.

The saliency of geographical landmarks for community navigation: A photovoice study with persons living with dementia.

This study uses the photovoice method to explore how persons living with mild-to-moderate dementia perceive neighborhood landmarks and identify characteristics that render these landmarks salient for outdoor navigation. Previous research has highlighted the role of well-designed, stable geographical landmarks in improving the navigability of neighborhoods for persons living with dementia. However, the specific attributes that render landmarks salient have not yet been sufficiently explored, resulting in inadequate evidence-based environmental design guidelines for dementia-friendly communities. To address this gap, a photovoice study was conducted with five community-dwelling persons living with dementia and their care partners, as part of a dementia-friendly neighborhood walking program in the city of Seattle, USA. Photovoice facilitated the exploration of saliency of neighborhood landmarks from an emic perspective by (i) empowering persons living with dementia to identify and take photos of salient landmarks during the group walk and (ii) interpret and reflect on attributes that contributed to saliency using the photos as visual aids in a focus group discussion and survey questionnaire. Participants associated the saliency of landmarks with two groups of attributes: (i) visual distinctiveness, which encompassed physical aspects, such as size, shape, color, texture; and (ii) meaningfulness, which included subjective factors of personal and emotional significance that linked the landmarks to participants' pasts, passions, hobbies, and emotions related to having dementia. Findings suggest that outdoor landmarks should be designed for maximum legibility and noticeability, as well as familiarity, recognizability, and memorability. The evidence from this research also points to the likely positive effect of salient neighborhood landmarks on the community navigation of persons living with dementia.

'I am making a difference': Understanding advocacy as a citizenship practice among persons living with dementia.

In recent years, persons living with dementia have started advocating to have a more active role in shaping policies and interventions that impact their quality of life. In order to meaningfully involve and engage persons living with dementia in decision-making processes, community partners, providers, planners, as well as researchers and healthcare practitioners need to have a better understanding of their experience of living with dementia. Focusing on the lived experiences of dementia and advocacy enables the understanding that persons living with dementia can be agents of change with purpose and intent and helps us think beyond common stereotypes associated with dementia. Despite the valuable efforts of advocates to create this paradigm shift, there is limited research documenting their experiences of advocacy. Using the citizenship perspective, this study explores the experience of advocacy through semi-structured interviews with three persons living with dementia in Vancouver, Canada, focusing specifically on their motivation to advocate and the challenges they have faced along the way. Findings suggest a number of ways through which advocates living with dementia position themselves as social citizens. Consistent with the dimensions of social citizenship, participants suggested that advocacy (i) gave them a sense of purpose; (ii) helped them express their solidarity with the wider community of people living with dementia; (iii) facilitated their fight for freedom against stigma and discrimination; and (iv) enabled them to grow and evolve over time. Supporting individuals' meaningful engagement and advocacy helps acknowledge the agency and autonomy of persons living with dementia and their identity as social citizens. Taking this approach is imperative to facilitate community partnerships with persons living with dementia and their engagement in the development of relevant policy and practices aimed at creating dementia-friendly communities.