Andrew Clark

Bangladeshi communities experience poor health outcomes and have higher risk factors for vascular dementia. This article explores the perceptions of people living with dementia, as well as the perceptions of their family members and caregivers, and gathers their views on current dementia support services in order to make recommendations to improve the provision of dementia support services in a UK Bangladeshi community. A total of 25 semi-structured face-to-face and virtual interviews were conducted with individuals with dementia, their family caregivers and dementia service providers from a UK Bangladeshi community. The interviews were recorded digitally and transcribed verbatim. NVivo was used for thematic analysis. Family members and caregivers of people living with dementia demonstrated a strong sense of obligation and interpersonal motives for providing care at home. Despite their dedication, care partners struggled to provide adequate care due to work commitments and a lack of dementia knowledge. Cultural and language barriers were identified when accessing health and social care services. This article provides a further look into a UK-based Bangladeshi community’s experience with people living with dementia. Their views can contribute to a better understanding of the perceived challenges that the Bangladeshi community faces in accessing dementia health and social care services and support, thereby enabling better decision making by service providers and policy makers. These findings will also inform the development, delivery and adoption of dementia policy support, as well as the integration of diversity into dementia policy to shape future approaches to care provision.

This Beyond the Text submission presents a series of three graphic magazines (zines) as part of a research project about how people living with dementia experience their neighbourhoods and communities of place. The zines were produced through a collaboration of a graphic artist, academics and a small group of people living with dementia and/or family carers. The zines were designed to reflect the wider findings of the research. The idea to produce the zines came from people living with dementia themselves who were keen that the research findings reached beyond at academic audience, while at the same time were not turned into ‘yet another leaflet about dementia’. We have published the findings from the research in a number of academic formats, but have not yet had the opportunity to showcase the zines to a wider, and more diverse audience beyond our circle of research supporters, stakeholders and research participants.

Background: Most people living with dementia prefer to continue living at home. However, as dementia progresses, people may become more susceptible to risk including cooking accidents that can lead to fire. This is a common concern cited by people living with dementia, family carers, and healthcare professionals, but research in this area is lacking. Methods: To identify initiatives, interventions, and guidance around fire safety for people living with dementia at home, first we conducted a narrative review of international literature. Next, we used England as a case study by searching all English fire and rescue services websites. We also sent Freedom of Information requests to all services to explore what information is held about fire incidents involving people living with dementia in England. Findings: Eight peer-reviewed articles were eligible for inclusion. Existing literature suggests that assistive technologies such as stove shut-off devices can be difficult for people living with dementia to use and cause additional problems and risks. All English fire services offer ‘Home Fire Safety Visits’, designed to help those vulnerable to fire identify and reduce risk at home however, only four specify that people living with dementia are eligible. Eleven services and two UK dementia charities have produced fire safety guidance for people living with dementia in England. Dementia awareness training in one fire service increased support offered to people living with dementia including provision of assistive technologies. Fire services in England do not record dementia status routinely and methodological issues mean that available data is unlikely to be accurate. Conclusions: There is scope for developing standardised dementia fire safety guidance and awareness training. Further research is needed to explore what types of assistive technologies people affected by dementia want and would find acceptable. We conclude with suggestions for fire safety policy, practice, and future research for England and internationally.

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members’ understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders’/service providers’ views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have “alternative” knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community.

Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities.Methods: Forty‐six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis.Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia.Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.

This article focuses on the use of a participatory social network mapping method with family carers. This is one of a suite of methods developed in a 5-year qualitative multi-centre project exploring how neighbourhoods support, enable or disable people with dementia and their families to live well in their communities. The article considers how mapping provides insights into family support networks, revealing the fluidity of support and care within relationships as well as providing opportunity for individuals to represent the complexities of their relationships with more and less significant others. However, the potential offered by the approach goes beyond those of visual representations of networks and contacts. Paying attention to the co-production process, as well as the reflexive dialogue that emerges in the exchange between researcher, participants, and the maps themselves, we consider how the maps emerge as affective artifacts, weighted with emotion.