Remote and Rural Dementia Care: Why is this Important for Policy, Research, Practice and the Lived Experience of Dementia?

2020 ◽  
pp. 3-14
Author(s):  
Anthea Innes ◽  
Debra Morgan ◽  
Jane Farmer
Author(s):  
Anthea Innes ◽  
Debra Morgan ◽  
Jane Farmer

This chapter sets out the need for a focus on remote and rural dementia care. It highlights the need to consider the interconnections between policy, practice and research evidence and the lived experience of people living with dementia in remote and rural areas. The chapter provides an overview of the structure and aims of the book.


Author(s):  
Ariella Meltzer ◽  
Helen Dickinson ◽  
Eleanor Malbon ◽  
Gemma Carey

Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.<br />Key messages<br /><ul><li>Market stewardship is key to guiding quasi-markets, including in the disability sector;</li><br /><li>Evidence guiding market stewardship is often about inputs and outputs only;</li><br /><li>It would be beneficial to also include lived experience evidence from people with disability;</li><br /><li>We propose a framework for the inclusion of lived experience evidence in market stewardship.</li></ul>


2019 ◽  
Vol 24 (3-4) ◽  
pp. 212-230 ◽  
Author(s):  
Chris Knifton ◽  
Scott Yates

Background Debates relevant to both undergraduate and postgraduate nurse education regarding the conceptualisation and disciplinary ownership of dementia, including its framing as a neuro-psychiatric condition, a terminal illness or a consequence of ageing, are important in supporting an understanding of the lived experience of dementia for individuals and their family carers and how, as a condition, it has come to be problematised in Western society. The work of Michel Foucault is useful in setting this debate within a critical historical context. Aims Using Foucault's ‘history of problematizations’ we present such debates around dementia's conceptualisation in Western society and consider how a Foucauldian critical historical project influences nursing education by re-examining the problematisation of dementia within society, what it is to be a person with dementia, and how alternative conceptualisations shape how we see the condition – as well as how we provide learning opportunities for dementia-care professionals. Results Six differing ways of conceptualising or problematising dementia were found (as a natural consequence of ageing, a mental disorder, a bio-medical disease, a neuro-cognitive disorder, a disability and a terminal illness), each offering alternative ways we might present it in an educational context. Conclusions We argue for both undergraduate and postgraduate student nurses to engage in learning that locates what it is to be a person with dementia within particular conceptual frameworks that would allow understanding of how these ideas or constructs are reliant on historically contingent assumptions. Here, taken-for-granted assumptions are unsettled, and a more critically reflective position is adopted. This will have an impact on the type of nurse to emerge from educational institutions, thus also affecting service delivery and the dementia care provided, as well as the knock-on effects for dementia education in other medical, health and social care courses and for institutions whose role it is to approve professional practice curricula content.


2020 ◽  
pp. 107780042096557
Author(s):  
Anne Harris ◽  
Stacy Holman Jones

This essay uses several of the prompts from the Massive::Microscopic experiment as a jumping off point for considering how affect theory and critical autoethnography offer us a framework for understanding, creating, and acting together in the time of COVID. Through stories of cloud-watching, mindfulness meditation, and other encounters with atmospheres and movements, we connect individual experiences of the pandemic to Buddhist understandings of a universal “we.” As a research practice committed to joining microscopic with macro lived experience, critical autoethnography offers a speculative method for collective reckoning with our infinitesimal selves in relation to the infinite of a pandemic.


2020 ◽  
Vol 30 (3) ◽  
pp. 454-458
Author(s):  
Arkadiusz Gut ◽  
Michał Wilczewski

We agree with Held’s (2020) arguments for establishing a research practice that prevents numerous forms of othering in mainstream psychological research, which is essentially derived from omitting concepts embedded in the lived experience of the other. However, we believe those arguments are not yet sufficient for fulfilling the true potential of such research practice. In this discussion, we focus on accessing a lived experience of the other as a means of preventing epistemic violence that contributes to the oppression of othered people. We suggest that researchers broaden their psychological perspective that detaches concepts and theories from personal experience. To truly meet the other, the narrative approach offers promising potential, as it captures an individual’s lived experience and subjective perspective. Finally, we stress the pivotal role of social interaction in concept and folk theory formation, which is necessary to implement Held’s postulations for Indigenous psychology.


2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 346-346
Author(s):  
E Burgess ◽  
J Craft Morgan ◽  
Mary M Ball ◽  
P J Doyle ◽  
M M Perkins

2020 ◽  
Vol 40 (1) ◽  
pp. 72-83
Author(s):  
Andrew Madjar

In education, it is common to hear that we need to close the gap between research and practice. Less common is a consideration of what it means to close this gap. A lot of policy, research and professional learning assumes that research should inform teacher practice by providing evidence about ‘what works’ for students’ learning. However, there are other important ways that we can understand the relationship between research and practice. In this paper, I discuss one possibility for understanding this relationship by looking at the research of Max van Manen and his work in phenomenological pedagogy. Phenomenology provides a way for teachers to reflect on their practice by prioritising the meaning and significance of lived experience. As I describe, phenomenology is a valuable way for research to inform practice; but its value lies not in being able to tell us ‘what works’, but in its power to do something with us.


2020 ◽  
Vol 11 (1-2) ◽  
pp. 51-62
Author(s):  
Mah Rana ◽  
Jonathan A. Smith

This article presents findings of a Ph.D. case study that uses interpretative phenomenological analysis (IPA) to elicit a deep understanding of lived experience within the context of a ‘craft-encounter’ shared by an adult carer with her mother, who has dementia. Recent studies have evaluated the health and well-being benefits of participatory craft practice in community-based projects. However, a less examined site of research is the lived experience of participating in shared craft-encounters as a domiciliary based intervention for dementia care. This study elicits a nuanced understanding of lived experience of participatory textile-based craft and explores the value of working with video as an adjunct to IPA’s existing methodology as a way of attending to non-textual communication that is easily missed in the moment of occurrence. Reviewing primary-source video with participants produces additional data as a result of participants’ reflexivity and meaning-making through interpretation of video footage. The findings challenge the dominant bias that frames dementia care only in terms of losses without considering the potential gains and meanings of the dementia care experience.


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