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
Keyword(s):  
Lived Experience ◽  
Rural Areas ◽  
Research Evidence ◽  
Policy Research ◽  
Dementia Care ◽  
Research Practice ◽  
Policy Practice

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.

Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets

2021 ◽  
Author(s):  
Ariella Meltzer ◽  
Helen Dickinson ◽  
Eleanor Malbon ◽  
Gemma Carey
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Policy Research ◽  
Market Forces ◽  
Research Knowledge ◽  
Key Points ◽  
People With Disability ◽  
And Control ◽  
Insight Into ◽  
Inputs And Outputs

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>

Conclusions: grounds for hope

2018 ◽  
Author(s):  
Suzanne Cahill
Keyword(s):  
Human Rights ◽  
Research Evidence ◽  
Dementia Care ◽  
Care Policy ◽  
Policy And Practice ◽  
Policy Initiatives ◽  
The Core ◽  
People With Dementia ◽  
Policy Objectives ◽  
Rights Issues

This chapter will be used to highlight the key contribution this book makes to the field of dementia care policy and practice, as well as identifying some of its limitations. Returning to the core themes consolidated in the UN Convention and introduced in chapter three namely equality autonomy participation and solidarity and based on the topics reviewed in earlier chapters, the chapter points to the gaps that exist between the rhetoric of policy initiatives and the reality of peoples’ everyday lives and the further gap that can exist between policy objectives and research evidence. The chapter argues for a need for much more budgetary and political attention to be focused on dementia and for future iterations of dementia strategies to take cognizance of human rights issues. Human rights legislation rather than being seen as punitive and burdensome should be viewed as a critical framework for guiding all levels of action with people with dementia and their family members.

The terroir of bureaucratic practice: Everyday life and scholarly method in the study of policy

2018 ◽  
Vol 37 (4) ◽  
pp. 617-633 ◽  
Author(s):  
Merje Kuus
Keyword(s):  
Decision Making ◽  
Everyday Life ◽  
Lived Experience ◽  
Cultural Geography ◽  
The European Union ◽  
Policy Studies ◽  
Policy Practice ◽  
Michel De Certeau ◽  
Do So

This article seeks to connect political geographic scholarship on institutions and policy more firmly to the experience of everyday life. Empirically, I foreground the ambiguous and indeterminate character of institutional decision-making and I underscore the need to closely consider the sensory texture of place and milieu in our analyses of it. My examples come from the study of diplomatic practice in Brussels, the capital of the European Union. Conceptually and methodologically, I use these examples to accentuate lived experience as an essential part of research, especially in the seemingly dry bureaucratic settings. I do so in particular through engaging with the work of Michel de Certeau, whose ideas enjoy considerable traction in cultural geography but are seldom used in political geography and policy studies. An accent on the texture and feel of policy practice necessarily highlights the role of place in that practice. This, in turn, may help us with communicating geographical research beyond our own discipline.

scholarly journals Using Action Research to Improve Race Relations in Prisons

2019 ◽  
Author(s):  
Tom Ellis
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
Race Relations ◽  
Policy Research ◽  
Research Approach ◽  
Participatory Action ◽  
Policy Practice ◽  
Action Research Approach ◽  
Research Findings ◽  
Utilization Focused

Tackling racism in prisons has a relatively long policy, practice, and research history in England and Wales. However, clear evidence of success in reducing racism in prisons has been, and still is, difficult to find. This article is based on a unique study that was carried out either side of the new millennium (late 1999 to mid-2001), but no equivalent exercise has been repeated since. Due to a unique set of circumstances at the time the study was carried out, it became possible to employ an action research approach that required policymakers, practitioners, volunteers, and researchers to agree on: an emergent research design; implementation; intervention; and measurement. There are many forms of action research, but this study could best be defined as a “utilization-focused evaluation, which is particularly applicable to the criminal justice environment. This approach also included elements of participatory action research.” The emphasis here is to show how the action research approach can be both more systematic and more flexible than traditional social science approaches. This applies to both epistemological and research methods considerations, because, by combining theory and action, action research can provide a more viable way of ensuring that policy works in practice, and is sensitive to unique institutional exigencies. Throughout, discussion is contextualised using policy, research and methodology texts from the period when the research was commissioned, but given an overall methodological context by referencing more recent methodology text books. The article first outlines the context in which the action research study was commissioned, before providing a summary of the international research findings on race relations in prisons, from which key concepts for the project were initially operationalized. The chapter then explains how the specific participatory action research approach was selected as the most appropriate design, the extent to which the approach was successful, and why. The article ends with a discussion of the implications of findings and conclusions from this study for current policy and methodological approaches.

scholarly journals A ‘history of problematizations’ for dementia education: a Foucauldian approach to understanding the framing of dementia

2019 ◽  
Vol 24 (3-4) ◽  
pp. 212-230 ◽  
Author(s):  
Chris Knifton ◽  
Scott Yates
Keyword(s):  
Nursing Education ◽  
Lived Experience ◽  
Terminal Illness ◽  
Historical Context ◽  
Dementia Care ◽  
Western Society ◽  
Health And Social Care ◽  
History Of ◽  
Person With Dementia ◽  
Dementia Education

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.

scholarly journals Dementia care in rural areas: A cross‐sectional study from the Wisconsin Alzheimer’s Institute (WAI) Dementia Diagnostic Clinic Network

2020 ◽  
Vol 16 (S10) ◽  
Author(s):  
Maria C Mora Pinzon ◽  
Jody Krainer ◽  
Stephanie Houston ◽  
Gina Green‐Harris ◽  
Nia Norris ◽  
...  
Keyword(s):  
Rural Areas ◽  
Cross Sectional Study ◽  
Dementia Care ◽  
Sectional Study ◽  
Cross Sectional

‘Picture It If Yous Will’: Theatre and Theatregoing in Rural Scotland

2005 ◽  
Vol 21 (1) ◽  
pp. 61-76 ◽  
Author(s):  
Christine Hamilton ◽  
Adrienne Scullion
Keyword(s):  
Rural Areas ◽  
Cultural Policy ◽  
Policy Research ◽  
Policy Framework ◽  
Television Studies ◽  
Film And Television ◽  
The Arts ◽  
The University

In the following article, Christine Hamilton and Adrienne Scullion review the system of theatre provision and production that exists in the rural areas of Scotland, most especially in the Highlands and Islands, assessing the policy framework that exists in the nation as a whole and in the Highlands and Islands in particular. They highlight the role and responsibilities of volunteers within the distribution of professional theatre in Scotland, challenge the response of locally based theatre-makers and nationally responsible agencies to represent rural Scotland, and raise issues fundamental to the provision of culture nationally. In doing so, they question what we expect theatre policy to deliver in rural areas, and what we expect rural agents to contribute to theatre provision and policy. Finally, they suggest that, in the system of rural arts in Scotland, there are wider lessons for the development of arts in and the arts of other sparsely populated and fragile communities. Christine Hamilton is the director and Adrienne Scullion the academic director of the Centre for Cultural Policy Research at the University of Glasgow, where Adrienne teaches in the Department of Theatre, Film, and Television Studies.

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