Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice

2008 ◽  
Vol 18 (2) ◽  
pp. 165-174 ◽  
Author(s):  
Pamela Roach ◽  
John Keady ◽  
Penny Bee ◽  
Kevin Hope

Young-onset dementia (dementia in people under 65 years of age) remains an under-researched area of dementia care. As populations age in industrialized countries, dementia is set to increase: this includes dementias in younger people. Current estimates suggest there are over 15 000 younger people living with dementia in the UK, whilst dedicated services and research in this area remain limited. Younger people may be affected by rarer forms of dementia that can create various kinds of impairment in the individual. For example, as Boxer and Miller report, although memory can be affected, people with conditions such as frontotemporal dementia can present initially with personality changes as the primary symptom. Younger people may also have more difficulties with visuospatial and semantic tasks when compared with an person, and there are likely to be personal and societal implications for the entire family.

2020 ◽  
Vol 35 (3) ◽  
pp. 291-302
Author(s):  
Nicola Patterson

Purpose The call for more women to start up and grow businesses as a vehicle for economic vibrancy is a prevailing discourse in the UK. There have been calls for greater co-ordination between research, policy and practice to create collaborative spaces whose focus is to influence and shape structures and processes beyond the individual or community level to a macro level of enterprise policy. However, calls have not specifically focussed on the issues of gender or other categories of social difference. This study aims to understand how such co-ordinations can be established to enable progress within the women’s entrepreneurship space through the development of collaborative spaces fusing research, policy and practice and how they should be structured to ensure inclusion through the process as well as enabling greater inclusion as part of the collaborative space outcome. Design/methodology/approach Taking a critical feminist perspective, the study draws from extant literature on women and minority networks research from the women in leadership, diversity and inclusion fields as a lens through which to frame the analysis of women’s enterprise policy in the UK, research and practice. Findings The study highlights the importance of collective feminist action drawing upon post-feminist sensibilities and an Engaged–Activist Scholarship approach. Such collective feminist action appreciates the importance of the micro as an enabler to progressive action at the macro level to enact structural and system change within the entrepreneurial ecosystem. A framework for inclusive and collaborative entrepreneuring space development is offered. Practical implications This paper offers policymakers, researchers and practitioners a framework as a practical way forward to ensure efforts are progressive and enable structural and systemic change. Originality/value The paper offers a framework for developing inclusive and collaborative entrepreneuring spaces to ensure progression by lifting the focus to a macro level of change to enable inclusion as part of the process and outcome of such collaborative spaces.


2015 ◽  
Vol 21 (2) ◽  
pp. 157 ◽  
Author(s):  
Louise Freijser ◽  
Lucio Naccarella ◽  
Rosemary McKenzie ◽  
Meinir Krishnasamy

Continuity of care is integral to the quality and safety of care provided to people with cancer and their carers. Further evidence is required to examine the contribution Nurse Cancer Care Coordinator (NCCC) roles make in improving the continuity. The aim of the present study was to clarify the assumptions underpinning the NCCC roles and provide a basis for ongoing evaluation. The project comprised a literature review and a qualitative study to develop program logic. The participants who were purposively sampled included policy makers, practitioners, patient advocates, and researchers. Both the literature and participant reports found that NCCC roles are diverse and responsive to contextual influences to coordinate care at the individual (patient), organisational, and systems levels. The application of the program logic for the development of NCCC roles was explored. The conceptualisation of NCCC roles was also examined in relation to Boundary Spanning and Relational Coordination theory. Further research is required to examine how NCCCs contribute to improving equity, safety, quality and coordination of care. The project has implications for research, policy and practice, and makes explicit existing assumptions to provide a platform for further development and evaluation of these roles.


2021 ◽  
Author(s):  
Eleanor Gordon ◽  
Briony Jones

The experiences and marginalisation of international organisation employees with caring responsibilities has a direct negative impact on the type of security and justice being built in conflict-affected environments. This is in large part because international organisations fail to respond to the needs of those with caring responsibilities, which leads to their early departure from the field, and negatively affects their work while in post. In this toolkit we describe this problem, the exacerbating factors, and challenges to overcoming it. We offer a theory of change demonstrating how caring for carers can both improve the working conditions of employees of international organisations as well as the effectiveness, inclusivity and responsiveness of peace and justice interventions. This is important because it raises awareness among employers in the sector of the severity of the problem and its consequences. We also offer a guide for employers for how to take the caring responsibilities of their employees into account when developing human resource policies and practices, designing working conditions and planning interventions. Finally, we underscore the importance of conducting research on the gendered impacts of the marginalisation of employees with caring responsibilities, not least because of the breadth and depth of resultant individual, organisational and sectoral harms. In this regard, we also draw attention to the way in which gender stereotypes and gender biases not only inform and undermine peacebuilding efforts, but also permeate research in this field. Our toolkit is aimed at international organisation employees, employers and human resources personnel, as well as students and scholars of peacebuilding and international development. We see these communities of knowledge and action as overlapping, with insights to be brought to bear as well as challenges to be overcome in this area. The content of the toolkit is equally relevant across these knowledge communities as well as between different specialisms and disciplines. Peacebuilding and development draw in experts from economics, politics, anthropology, sociology and law, to name but a few. The authors of this toolkit have come together from gender studies, political science, and development studies to develop a theory of change informed by interdisciplinary insights. We hope, therefore, that this toolkit will be useful to an inclusive and interdisciplinary set of knowledge communities. Our core argument - that caring for carers benefits the individual, the sectors, and the intended beneficiaries of interventions - is relevant for students, researchers, policy makers and practitioners alike.


Author(s):  
Ian A. James ◽  
Alan Howarth

In the UK there are over 22,000 care homes, largely run by the private and charitable sectors, caring for 416,000 people. The residents in care homes present with a range of needs linked to physical health, cognitive health, and mental health. A large proportion of residents in care homes have dementia and many of them exhibit Behaviours that Challenge (BtC). This chapter focuses on the non-pharmacological interventions available in care homes to help treat BtC that occur in the context of dementia. It discusses preventative interventions designed to promote the wellbeing of people with dementia, and reviews the evidence. Formulation-led interventions identify the needs of the individual and lead to the development of person-centred care plans and the evidence strongly supports that these are needed to deliver effective psychosocial interventions in care homes. Finally, the chapter discusses the implications for future research.


2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
Caroline Vandekinderen ◽  
Griet Roets ◽  
Rudi Roose ◽  
Geert Van Hove

Over the last few decades, research, policy, and practice in the field of mental health care and a complementary variety of social work and social service delivery have internationally concentrated onrecoveryas a promising concept. In this paper, a conceptual distinction is made between anindividualapproach and asocialapproach to recovery, and underlying assumptions of citizenship and interrelated notions and features of care and support are identified. It is argued that the conditionality of the individual approach to recovery refers to a conceptualization of citizenship asnormative, based on the existence of a norm that operates in every domain of our society. We argue that these assumptions place a burden ofself-governanceon citizens with mental health problems and risk producing people with mental health problems as nonrecyclable citizens. The social approach to recovery embraces a different conceptualization of citizenship asrelational and inclusiveand embodies the myriad ways in which the belonging of people with mental health problems can be constructed in practice. As such, we hope to enable social services and professionals in the field to balance their role in the provision of care and support to service users with mental health problems.


2020 ◽  
Vol 13 (2) ◽  
pp. 57-71 ◽  
Author(s):  
Sarah Fox

Purpose Domestic abuse victimisation is a common experience among women with problematic substance use, but support provision for both issues is siloed within the UK. Research on the topic focuses on practitioner responses, dominating women’s voices within research, policy and practice. As such, knowledge about women’s experiences of help-seeking is missing. This study therefore aims to fill a gap in knowledge by exploring the lived experiences of supporting seeking among women impacted by domestic abuse and substance use. Design/methodology/approach Semi-structured interviews were conducted with 12 women who had a history of co-occurring problematic substance use and domestic abuse. Influenced by interpretive phenomenological analysis and feminist research praxis, the study explored how women with dual needs navigated support and help seeking and the barriers they faced. Findings The women reported the biggest barrier was the disconnect between substance use and domestic abuse support, including a gap in the communication of information. This resulted in them having to choose which of their needs to seek support for. None of the women received support for their combined experiences, and most of the women never received support for their domestic abuse experiences alone. Originality/value This is the first piece of research from the UK to explore, in-depth, women’s journey through support for their co-occurring substance use and domestic abuse victimisation. Previous research has not consulted with women to understand how they navigate the complex support systems available. This paper is, therefore, important, because it demonstrates the journeys to services these women take and the barriers they have to overcome.


2002 ◽  
Vol 47 (7) ◽  
pp. 628-634 ◽  
Author(s):  
Frank Holloway ◽  
Jerome Carson ◽  
Sarah Davis

Objective: To review research, policy, and practice in psychiatric rehabilitation in the UK. Method: We undertook a literature review and review of government policy documents. Findings: Most individuals with severe, disabling mental illnesses are cared for by generic community mental health services under the Care Programme Approach (CPA). Current government policy requires the introduction of assertive outreach and early psychosis services and is highly consistent with the adoption of the recovery paradigm within UK mental health services. Research and development activities have demonstrated the success of the UK hospital-closure program and have contributed to the worldwide resurgence of interest in psychosocial interventions in psychosis. Conclusions: A need remains to focus research and practice on those who are most disabled by their illnesses and to improve the skills of the workforce in psychosocial interventions.


2010 ◽  
Vol 21 (2) ◽  
pp. 152-169 ◽  
Author(s):  
Gill Windle

SummaryThe complexities of defining what appears to be the relatively simple concept of resilience are widely recognized. This paper analyses the concept of resilience from a range of disciplinary perspectives and clarifies a definition in order to inform research, policy and practice. The work takes a life course approach to resilience, examining evidence derived from research across the lifespan. It incorporates the methods of systematic review, concept analysis and consultation through face-to-face meetings. The synthesis of methodological approaches enables a clear identification of the antecedents, defining attributes and consequences of resilience, validated with stakeholder partners. Through this process, resilience is defined as the process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. Assets and resources within the individual, their life and environment facilitate this capacity for adaptation and ‘bouncing back’ in the face of adversity. Across the life course, the experience of resilience will vary. A large proportion of resilience research is routed within the discipline of developmental psychology, and has mainly been developed with children and adolescents. A major contribution to resilience research could be made through more multi-disciplinary studies that examine the dynamics of resilience across the lifespan, its role in healthy ageing and in managing loss, such as changes in cognitive functioning.


2016 ◽  
Vol 33 (4) ◽  
pp. 357-368 ◽  
Author(s):  
Alexandra J. Rankin-Wright ◽  
Kevin Hylton ◽  
Leanne Norman

The article examines how UK sport organizations have framed race equality and diversity, in sport coaching. Semistructured interviews were used to gain insight into organizational perspectives toward ‘race’, ethnicity, racial equality, and whiteness. Using Critical Race Theory and Black feminism, color-blind practices were found to reinforce a denial that ‘race’ is a salient factor underpinning inequalities in coaching. The dominant practices employed by key stakeholders are discussed under three themes: equating diversity as inclusion; fore fronting meritocracy and individual agency; and framing whiteness. We argue that these practices sustain the institutional racialised processes and formations that serve to normalize and privilege whiteness. We conclude that for Black and minoritised ethnic coaches to become key actors in sport coaching in the UK ‘race’ and racial equality need to be centered in research, policy and practice.


2020 ◽  
Author(s):  
◽  
Jordan Brealy

Slavery remains present in society and has been found to occur under various manifestations throughout the United Kingdom. Knowledge derived from academic enquiry regarding modern slavery has increased over recent years although sparse attention has been given to localised communities. It is important to develop the evidence-base locally to effectively increase the understanding of this diverse issue and aid local responses. This study aimed to produce evidence on local practitioners’ perspectives on modern slavery, focusing on the case study of Gloucestershire. Fourteen semi-structured interviews were conducted with a range of local practitioners in modern slavery related fields in Gloucestershire, including the police, healthcare and non-governmental organisations (NGOs). Thematic analysis was used to identify key themes from the data. These themes related to differing perceptions of the problem locally and numerous types of exploitation e.g. sexual exploitation, labour exploitation, criminal exploitation. One example of this is the alleged increase in sexual exploitation during a localised sporting event. The data also highlighted several barriers hindering local responses, progress and awareness e.g. victims not perceiving themselves as victims, victim co-operation with services and public service funding issues. This study contributes to the evidence indicating that localities such as Gloucestershire are not exempt from a variety of slavery practices. The enquiry highlights evidence of various types of slavery offences manifesting in Gloucestershire. However, a key finding of this study is the fragmented perceptions of localised modern slavery, which highlights the need to support a collaborative approach to this diverse problem. Barriers and complexities with the local response are acknowledged such as; concerns regarding local awareness, pressures associated with resourcing and the struggles associated with identifying victims of hidden criminality and exploitation. Although these findings relate to Gloucestershire they carry wider implications relevant to other localities across the UK. Due to the wider implications of this enquiry, a number of research, policy and practice recommendations are made based on the data from this study.


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