Factors affecting user participation for elderly people with dementia living at home: a critical interpretive synthesis of the literature

ABSTRACT

Professional caregivers are expected to facilitate user participation for people with dementia. At the same time, an increasing number of elderly people with dementia are now being cared for at their homes. Research is scarce on user participation for people with dementia, especially for people with dementia who live at home. This article aims to systematically and critically review the factors affecting user participation for elderly people with dementia living at home from the viewpoint of the patients, family caregivers, professional caregivers and researchers. A systematic literature search and critical interpretive synthesis were conducted. The search yielded 1,957 articles. In total, 112 full-text articles were retrieved, of which 27 met the inclusion criteria. Five broad analytical themes were identified during the analysis: individual characteristics, professional caregiver characteristics, decision characteristics, relational characteristics and organisational characteristics. The results show that the value placed on user participation can differ between family caregivers and professional caregivers. People with dementia still experience stigmatisation, preventing user participation, and relations with both family and professional caregivers play a key role in enabling user participation for people with dementia.     

Navigating religious diversity: exploring young people’s lived religious citizenship in Indonesia

Against the backdrop of several concerning reports which have noted growing socio-religious conservatism and intolerance amongst Indonesia youth, this study examined how school-aged Indonesian young people navigate encounters with religious difference in their everyday lives. Recognising the significance of religious and citizenship education curricula, the research included classroom observations and interviews with 20 religiously-diverse Indonesian young people in three purposively selected high schools in Jakarta. The paper reveals that participants in all three schools agreed that religious studies and their personal religious frameworks were central to their approaches toward religious tolerance. However, their lived everyday experiences of rubbing shoulders with religious ‘others’, expanded upon and critiqued the narrowness and rigidity of these frameworks and showed greater religious inclusivity. Through this analysis the paper integrates prior work on ‘lived religion’ and ‘lived citizenship’ to fuse a ‘lived religious citizenship’ concept, arguing that this adds depth to both fields by recognising that religion cannot be separated from the experience of being a citizen. A focus on lived religious citizenship provides a deeper account of individual identity and highlights the importance of qualitative studies focused on the living out of religion and citizenship.     

‘I walk from trouble’: exploring safeguards with adults with intellectual disabilities – an Australian qualitative study

People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life.     

Inventing adulthoods: a biographical approach to understanding youth citizenship

Traditionally adulthood and citizenship have been synonymous. Yet adulthood is changing. In this paper we explore how young people's evolving understandings of adulthood may contribute towards an understanding of citizenship within the broader context of increasingly extended and fragmented transitions. The paper draws on a unique qualitative longitudinal data set in which 100 young people, from contrasting social backgrounds in the United Kingdom, have been followed over a five‐year period using repeat biographical interviews. We present first the themes that emerged from a cross‐cut analysis of the first of three rounds of interviews distinguishing between relational and individualised understandings of adulthood. We then present a model we developed to capture the ways that young people sought out opportunities for competence and recognition in different fields of their lives. Finally a case study that follows a young woman through her three interviews illustrates how these themes can appear in an individual trajectory. We offer the model and case study as a way of exploring a more subjective approach to citizenship in which participation is not deferred to some distant future in which economic independence is achieved, but is understood as constantly constructed in the present.     

Social enterprises as enabling workplaces for people with psychiatric disabilities

In recent years, western governments influenced by neoliberalism have emphasized paid work as a key route to social inclusion and community participation for people with psychiatric disabilities. Although paid work can offer many rewards, access to mainstream employment for people with psychiatric disabilities is difficult as they continue to encounter discrimination and a lack of workplace accommodation. One response to these challenges has been the creation of social enterprises as ‘alternative spaces’ of employment for people with psychiatric disabilities. On the basis of interviews with key informants from 21 different social enterprises across Ontario, Canada, this paper critically analyzes the strategies used by organizations to create jobs that are both accommodating for people, but also conducive to the ongoing success of the business.     

The coping model: what is it and what might be its implications for social work practice?

This article examines whether a coping model developed as a framework for analysis of research interviews is useful in social work practice. The coping model emerged from a study involving qualitative interviews with social service clients in Norway, designed to explore how they coped with challenges in everyday lives, both on an individual level and in interacting with their environment. The model emerged from preliminary analysis and was then used in further analysis of the interview data. The study showed that the informants experienced two major challenges: (1) Unemployment and (2) living with a shortage of money over time, even though their life situations were heterogeneous. Some informants experienced potent coping strategies in finding employment and became independent of social services. Other informants experienced shortages in their capacities for work and continued to be dependent on allowances. They used their coping resources to achieve more meaningful life situations without employment. The coping model represents how coping is understood theoretically in the study and the present paper considers the model's relevance and implications for social work practice itself.     

Developing an analytical framework for multiple perspective,qualitative longitudinal interviews (MPQLI)

Collecting multiple perspectives data (e.g. from related individuals) in a qualitative longitudinal design can provide rich understanding of the dynamics at play in complex relational systems, and the different perceptions of people involved. However, such approaches are inherently challenging due to the complexity and volume of data involved. So far, little attention has been paid to the methodological challenges of data analysis in multiple perspectives longitudinal research. This paper contributes to the development of a systematized analysis process for multiple perspectives qualitative longitudinal interviews (MPQLI). We present a framework for handling the complexity and multi-dimensionality of MPQLI, describing discrete steps in such analyses, and related aims and insights. We exemplify the suggested strategies with our own research on the transition to parenthood. The proposed framework can increase both traceability and credibility of analysis of MPQLI, and help to realize the potential of multiple perspectives longitudinal interviews.     

Intentions and strategies among elderly people: Coping in everyday life

Many studies of the elderly adopt a provider perspective, focusing on social policy, organizations, and professional groups. Less is known about how the elderly manage when they eventually need help in everyday living. This study examined the everyday behavior and strategies of the elderly through conducting semi-structured, in-depth interviews with 22 people over age 65. The intentions and strategies found revealed that the elderly managed or coped in active, adaptive, and passive ways, ranged along a continuum from actively maintaining their independence to passively depending on others.     

Disabled People: active or passive citizens - reflections from the Malaysian experience

The concept of citizenship has once again entered centre-stage in the debate among political philosophers, welfare theorists and activists. Marginalised groups, including disabled people around the world, are making a claim for their inclusion, rights and equal opportunities on the basis of citizenship rights. The Malaysian experience of disabled people within a newly-industrialising country draws lessons on how a disadvantaged section of Malaysian society struggle to enhance their rights as citizens of the nation and a share of the nations wealth. While there are difficult challenges, there are also positive indicators for the active citizenship participation of disabled people among fellow Malaysians.     

Disabling Spaces and Spatial Strategies: Feminist Approaches to the Home Environment of Family Caregivers of People with Dementia

ABSTRACT

The home environment becomes very important for family caregivers of people with dementia as a place of safety, retreat and care provision. Using a gender-based perspective, the authors analyzed thirteen interviews with family caregivers to understand how they perceived their home space. The data was analyzed thematically with the help of adjacency diagrams. Our analysis identified three main themes: compact layout, spatial flexibility, and the wider neighborhood. Given the gendered nature of caring, the findings are discussed drawing on the work of feminist architects regarding the home environment. The authors argue that feminist architectural approaches can usefully inform spatial strategies regarding dementia, ageing friendly housing, accessible living and the wellbeing of the caregiver. Different bodies and users’ needs should be at the epicenter of design, as opposed to conventional design and the current practices by developers, which may create a series of disabling spaces.     

Social inclusion for whom and towards what end? A critical discourse analysis of youth and sport policies in Turkey

This article examines the social inclusion policy strategies of the Turkish Ministry of Youth and Sport (MYS). Using a critical discourse analysis, based on Norman Fairclough’s work (2012), the aim is to analyse the discourses used within policy-related documents regarding social inclusion, youth, and sport. In order to achieve this objective, we analysed 15 key documents, including annual activity reports, national youth and sport policy documents, and strategic plans produced by the Ministry. Findings revealed that the dominant discourses about young people seem to be embedded within neoliberal and neoconservative ideologies in which depoliticised notions of ‘employment/apprenticeship’ and ‘the family’ are put forward as solutions for the social inclusion of young people. However, such a discourse risks further sustaining the social exclusion of youth, denying their full citizenship.     

Recognising the agency of people with dementia

People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.     

Exploring personhood in dining experiences of residents with dementia in long-term care facilities

Despite the shift toward using person-centered approaches in dementia care, the relevance and applicability of the concept “personhood” remains unclear in everyday practice and activities, such as mealtime experience for residents with dementia. Based on a qualitative study, this paper presents emergent themes at mealtimes that support or undermine personhood of twenty residents with dementia in two long-term care facilities. Methods of data collection included conversational interviews with residents with dementia, participant observations, focus groups with staff and examination of available documents. Data analysis identified eight themes: (1) outpacing/relaxed pace, (2) withholding/holding, (3) stimulation, (4) disrespect/respect, (5) invalidation/validation, (6) distancing/connecting, (7) disempowerment/empowerment, and (8) ignoring/inclusion. These findings raised questions about current practice and identified areas for improvement. Although staff approaches seemed to have the greatest impact on residents' experiences, the physical environment and organizational milieu were also responsible for hindering and facilitating staff to provide the best possible care and interaction.     

Postmodern theory and politics: Perspectives on citizenship and social justice

In this paper we consider some contributions made by postmodern perspectives to theoretical and political questions of citizenship and social justice. Postmodern theory is often dismissed as a distraction from pressing questions of material inequality and economic and political exploitation. In the paper we distinguish between ‘ludic’ or ‘spectral’ postmodernisms and ‘oppositional’ or ‘resistance’ postmodernisms. We suggest that the latter provide theoretical resources for analysing the cultural construction of inequalities and struggles around social inclusion and exclusion. The paper is divided into three sections: in the first, three dominant narratives of modernization are addressed and their implications for concepts of citizenship and social inclusion noted; in the second, some postmodern challenges to these narratives are explored in order to disclose some of the key problems with modern paradigms of citizenship and social justice; in the third section we outline two postmodern approaches to the analysis of social struggles and their contributions to debates about citizenship.     

From personhood to citizenship: Broadening the lens for dementia practice and research

Personhood has provided a lens for conceptualising dementia practice and research for over ten years. It has afforded the rationale and language for improving care and for raising consciousness about the status of people with dementia, as people, intrinsically worthy of respect. However, because personhood is essentially an apolitical concept concerned with psychosocial issues it may be too limiting. Citizenship provides another possible lens. Citizenship is used in cognate disciplines to promote the status of discriminated groups of people still further, to that of a person with power entitled to the same from life as everyone else. However, as citizenship tends to assume the self-cognizance to exercise rights and responsibilities, it may not be as appropriate for people with severe dementia. Both concepts are problematic then, taking too narrow a view of the human experience. For this field to develop over the next ten years it clearly needs a wider lens that is both inclusive of personhood and citizenship, but which also recognizes the complexities of human experience. This article reviews the relevance of personhood and citizenship for dementia practice and research, and argues for a broader lens that incorporates citizenship and sociological ideas about agency and structure.     

Young Children's Everyday Civics

Civic education for our youngest citizens faces two challenges if we want to imagine new possibilities. First, the field of social studies uses frames of analyzing citizenship education based on studies of older students. Second, predetermined adult ideas (and ideals) of what it means to act civically dominate our conceptions of civic education for young children. Drawing on data from a yearlong multivocal video-cued ethnography, this article argues that social studies needs to focus on the everyday, embodied ways that young children act civically. Using a vignette from a typical day, this article illustrates how young children's everyday relationships and interactions highlight a different vision of being civic—a more caring and relational idea of the common good. When we recognize young children's construction of a common good in their smaller, yet no less important, civic spaces of school, we can expand our notions of civic education.     

Reducing disablement with adequate and appropriate resources: a New Zealand perspective

This article presents the qualitative findings from a larger mixed methods study of the barriers and costs associated with disability in New Zealand. A social model of disability framework was integrated with an economic cost model using consensual budget standards to (1) identify key barriers disabled people experience in their everyday living and (2) develop consensus about the resources disabled people agree they require to reduce or remove them. Forty-nine people with physical, hearing, vision or intellectual impairment participated in a series of 8 impairment-based focus groups. The analysis identified inaccessible environments, negative attitudes, unreliable transportation and poor access to information as key barriers. However, lack of adequate and appropriate resources (e.g. equipment, modifications, support, transport and time) to address these barriers was the overarching obstacle to participation. The inclusion of time as both a barrier and a valuable resource is arguably the most important contribution of the study.     

Becoming,Being and Having Been: Practitioner Perspectives on Temporal Stances and Participation across Children’s Services

This article is based on a study of the changing meanings and experiences of citizenship and participation for young people in transition from primary to secondary school. One of the primary concerns of the study is to better understand how different professional practices impact upon young people’s uptake of participation and adoption of civic identity. To gain some insight into this area the article first looks at the contexts in which participation work is developing and the interrelationships between these developments across children’s services. How different practitioner’s conceptualise participation is tied into different assessments of young people’s or children’s capacity. Recasting questions of capacity as dialogues across differing temporal stances can offer practitioners new ways to reflect upon the power negotiations within their relations with young people. The key role temporality plays in configuring power relationships and transactions is explored as it arises within practitioner life history interviews. The shifts between temporal stances that young people experience as they interact with different practitioners are illustrated through fieldwork data.     

Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.