An Action Research Study Engaging in the Use of Storyboarding as Research-based Approach to Teaching to Identify Issues Faced when Working with People with Dementia from Minority Ethnic Communities

The common view that research informs teaching assumes a linear approach whereby teaching is considered an output of research. This paper reports the findings of an action research project that identified the issues and challenges faced by those working across health and social care when working with people with dementia from minority ethnic communities. It explored the research-teaching nexus by using an approach to teaching that was research-based as opposed to research-led. A storyboarding technique was used which involved identifying and dissecting real life experiences for discussion. The realisation that each story was unique to the individual demonstrated the benefits and importance of education and training for applying a person-centred approach to dementia care. This project also revealed the benefits of actively engaging course participants with research moving them from being recipients of research, to research- active. Such a process not only encouraged their intrinsic motivations but, also, critical thinking and reflective practice to support deep learning. Such findings demonstrate the benefits of linking teaching with research

Dementia carer perspectives: the construction of explanations and the conditional/consequential matrix

This article focuses upon the consideration and utilization of the Conditional/Consequential Matrix (CCM) within a critical realist and grounded theory approach in order to make sense of the experiences of Asian carers experiences of caring for a family member with dementia. It is based on two research projects undertaken by the authors: a doctoral study with Sikh carers of a family member living with dementia, and research into the lives and educational needs of rural young adults. Use of the CCM revealed that becoming and being a carer involves lived experiences and the establishment of an identity as a carer that is continually reaffirmed, refurbished or altered as the circumstances of the lives of individuals alter and evolve. Such heuristic schema and diagrams can make a real contribution to the thinking and presentation of a great deal of research

Improving the recruitment of Black, Asian and Minority Ethnic (BAME) communities in health and social care research: a review of literature.

It is suggested that Black, Asian and Minority Ethnic (BAME) communities experience severe health inequalities and poor health outcomes compared to indigenous white groups. However there is a dearth of health-related research undertaken with BAME populations in the UK. Many terms are used to describe this group of people such as ‘ethnic minorities’, ‘racial minorities’ ‘black and minority ethnic’ groups. The aim of this literature review is to identify the barriers and enablers for recruiting people from BAME communities in research. Searches were an iterative process, designed to keep up to date with published material from the year 2000 onwards to 2015. In total, 54 articles were retrieved from which 39 papers were included in this review. A thematic analysis was applied to identify the key issues for consideration when conducting health related research with BAME communities. A number of key themes were identified as potential barriers for conducting research with BAME communities and approaches for improving research participation of Black Asian and Minority Ethnic communities are discusse

Understanding the experiences of post-diagnostic dementia support for South Asians living in England: the need for co-production

© 2023 The authors. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: http://dx.doi.org/10.33140/ijadr.01.01.06Background: The increase in the numbers of South Asians in the United Kingdom (UK) is likely to lead to an increased need for dementia services yet; they are currently under-represented in dementia services. Furthermore, little is known about the prevalence, experience and treatment of dementia in the UK South Asian population, including their experiences of post-diagnostic support. Consequently, a project was commissioned by Alzheimer’s Society in the UK to gather insight into the experiences of post-diagnostic dementia support for the South Asian community in England to identify whether their post-diagnostic support needs were being met and what they needed from post-diagnostic support services. Methodology/Methods: As this project sought to understand experiences, a qualitative case-study approach was adopted. Twelve South Asian carers of a person with dementia and one South Asian person living with dementia took part in an on-line in-depth, topic-guided conversation. All conversations were audio recorded with consent and analysed using a thematic analysis. Findings: Analysis revealed that the South Asian community are doubly affected by dementia in relation to post-diagnostic support because 1) they received very little post-diagnostic support and 2) even when they did, it wasn’t culturally appropriate and therefore ineffective. Essentially, the lack of culturally inclusive care compounds the lack of access further. Consequently, people discussed current gaps in service provision, making recommendations that will result in better support, and more positive experiences for South Asians when diagnosed with dementia in England. In order to achieve this, South Asians in need of dementia support should be involved in the planning, development and delivery of post-diagnostic support services. Conclusions: This paper discusses findings that highlight the importance and benefits of co-production whereby people who use services and carers work with professionals in equal partnerships towards shared goals.This project was funded by Alzheimer’s Society, UK.Published onlin

The experiences, needs and outcomes for carers of people with dementia: Literature Review

This literature review was conducted as part of my role at the Association of Dementia Studies, University of Worcester.RSAS is developing new and innovative ways of supporting carers, people living with dementia and their families. The charity aims to enhance the health and well-being of carers through providing services that increase their knowledge and understanding of dementia, further enhances their caring skills and provides supportive and therapeutic services to them. This literature review provides an up-to-date review concerning the evidence in relation to the following questions: 1 What is the experience of caregiving for a person living with dementia, and in what context does caregiving take place? 2 What implications does caregiving have for the person/family member involved in caregiving and the person with dementia? 3 What is currently known about the factors that protect or increase the risk of poor outcomes in caregiving? 4 What evidence is there for interventions to support family caregiving and reduce the risk of poor outcomes and how is this delivered in relation to: a Information and Education b Multi-component, psycho-educational interventions c Psychological Interventions d Peer support and other social interventions e Assistive technology and new media 5 What form of service provision is required to support family caregivers? This will include consideration of such issues as: a How might a service be delivered? b What factors will influence delivery including location, design, accessibility and flexibility? 6 Who will the service be for and how can family caregivers be supported to engage with the service

Using co-production to create culturally inclusive dementia resources

© 2023 The Authors. Published by Journal of Dementia Care. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://journalofdementiacare.co.uk/article/using-co-production-to-create-culturally-inclusive-dementia-resourcesAlzheimer's Societ

Cultural Norms About the Roles of Older People in Sikh Families.

This chapter is organised into two parts. Part I discusses the migration history of Sikhs in the UK. It reviews current literature that provides a useful insight into the development and characteristics of Sikh communities in the UK, and profiles the Sikh community in the UK. It also reviews literature that provides an insight into the characteristics of Sikh families in the UK. Such information remains descriptive as the aim of Part I is to provide a backcloth for the findings of my doctoral study with Sikhs living in Wolverhampton presented in part II of this chapter. The aim of my doctoral study was to understand how migration experiences and personal histories impact on caring for a family member with dementia for Sikhs living in Wolverhampton in the UK. Whilst the focus of my research was not on grand-parent and grand-children relationships per se, my research provides rich and insightful information about the roles of older people in Sikh families which contribute to our understanding of such phenomenon. It also draws out those areas that are worthy of further exploration

Ethnicity and Cultural Diversity in Dementia Care. A Review of the Research

The Research Review section of the Journal of Dementia Care is fully peer reviewed.In this review Dr Karan Jutlla identifies research which could offer insights into the challenges and experiences of people living with dementia and their family carers from BME communities, and highlights evidence to support good practice for staff working with these individuals and families

Dementia and Caregiving in South Asian Communities in the UK

This chapter explores experiences of caring for a family member with dementia for those from South Asian communities living in the United Kingdom (UK). The barriers and challenges faced by South Asian carers of a family member with dementia have resulted in a low service uptake, with families often presenting themselves to services at crisis point. Existing research in this area has highlighted that experiences of South Asians are influenced by: cultural norms associated with roles and positions in South Asian families; dementia being understood as a mental illness and its associated stigma and prior experiences of health and social care services. Based on existing research this chapter explores each of these areas in-depth, making recommendations for dementia policy and practice initiatives and highlighting areas worthy of further investigation