Sources and perceptions of hope: A qualitative study involving younger people with dementia.

Hope is an important but overlooked phenomenon in dementia studies. Few studies have examined how people with dementia experience or perceive hope, possibly because it is seen as a diagnosis without hope. In this article, we report on a doctoral study, the aim of which was to examine the phenomenon of hope from the perspective of younger people with dementia to generate new understanding and enable community-based healthcare professionals to support well-being. The study was conducted in the Midlands, England, and used a modified diary-interview method. Six participants were given a camera and asked to take pictures of whatever made them feel hopeful. During a post-diary semi-structured interview, a conversation about hope took place. Interviews were transcribed and interpreted using the 'Voice-Centred Relational Method'. Findings show that hope is important to younger people with dementia. Sources of hope were the surrounding environment, keeping connected, taking action, and drawing on internal resources. An over-arching theme was 'defying dementia' and participants demonstrated resistance to negative stereotypes. Living with dementia did not curtail hope, although it could be weakened when participants felt 'cast adrift' by services. The In vivo codes generated were fear of dementia, threats to identity, disconnection from others, and frustrations and restrictions. It is concluded that hope should be a more central part of practice-based conversations with people with dementia.

Religion and the everyday citizenship of people with dementia in Nigeria: A qualitative study.

Background: Research on the lived experience of dementia is burgeoning across the social and health sciences. Yet, very little is still known about the experience of dementia for many tribes and ethnoreligious groups, as most studies are conducted in Western countries. Objective: The aim is to advance the understanding of the role of faith and prayer in the lives of people with dementia in Nigeria through a lens of everyday citizenship. Method: Interviews were conducted with 17 older people with dementia in a low-income, Yoruba-speaking community in Southwestern Nigeria. After transcription, the data were analysed thematically. Results: The major theme identified in participants' accounts was that prayer served as a space for active and agentic participation. This theme was further elaborated upon through four subthemes: (1) agency in routine and daily prayer, (2) cognitive (re)framing through prayer, (3) prayer as a vehicle for active social interaction and support, and (4) prayer as work and transaction. Conclusion: Participants described religious practices as important to their acceptance of the situations, their feelings of hope in everyday lives, and their connection and contributions to the community. Analysis also shows the centrality of relationality in the everyday experiences of people with dementia. Contribution: This article contributes to advancing the understanding of the socially orientated everyday experience of dementia. It contributes to a small body of literature on the social aspect and everyday experiences of living with dementia in Africa and stands out as the first of its kind study in Nigeria.

Gaining access to unspoken narratives of people living with dementia on a hospital ward-A new methodology.

BACKGROUND: This is a methodological paper that aims to advance the conceptualisation of participatory research by focusing on the value of capturing and understanding movement as a vital means of communication for older people with dementia in a general hospital ward. Qualitative research involving people with dementia tends to be word-based and reliant upon verbal fluency. This article considers a method for capturing and understanding movement as a vital means of communication. METHOD: This narrative enquiry is underpinned by the model of social citizenship that recognises people with dementia as citizens with narratives to share. The study focused on spontaneously produced conversations that were video recorded and analysed through a lens of mobility. This enabled each participant to share what was important to them in that moment of time without always using words. FINDINGS: The study findings showed that people with dementia have narratives to share, but these narratives do not fit the bio-medically constructed model that is generally expected from patients. Utilising a mobilities lens enabled the narratives to be understood as containing layers of language. The first layer is the words; the second layer is gestures and movements that support the words; and the third layer is micro movements. These movements do not only support the words but in some cases tell a different story altogether. CONCLUSION: This methodology brings attention to layers of communication that reveal narratives as a mobile process that require work from both the teller and the listener to share and receive. Movements are shown to be the physical manifestations of embodied language which when viewed through a lens of mobility enable a deeper understanding of the experience of living with dementia when an inpatient. Viewing narratives through a mobilities lens is important to the advancement of dementia and citizenship practices.

Advancing inclusive research with people with profound and multiple learning disabilities through a sensory-dialogical approach.

People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research-even when intending to be inclusive-tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research. The review presents themes that will inform a discussion on how to challenge the criteria in ways that make it possible to understand inclusive research for people who communicate in unconventional ways. We argue that a fruitful way of rethinking inclusive research is by applying a sensory-dialogical approach that privileges the dialogical and sensory foundations of the research. We suggest this might be a way to understand inclusive research that regards the person's communicative and cognitive distinctiveness.

Using documentary films to teach nurses about gender and the vulnerabilities facing older men with advanced dementia.

AIMS AND OBJECTIVES: To review short documentary films about older men with advanced dementia to use in teaching, and therein address the gender imbalance in the dementia care curricula and create opportunities to learn about masculine vulnerability. BACKGROUND: There has been a growing recognition of the role of gender in respect of vulnerability, with emerging evidence suggesting a need to acknowledge and prioritise dementia as a global women's health issue. Whilst a focus on women is understandable-more women are affected by dementia than men-gender does not equal women. It is important for nursing students, nurses and allied health professionals to understand the vulnerabilities facing older men with dementia as well, including gay men, who may face additional challenges. DESIGN: Discursive paper outlining the limitations of using mainstream fiction films in dementia care education and reviewing three short documentary films about older men with advanced dementia to use in teaching. METHODS: We summarised the literature on using films in nurse education and review three short documentary films about older men with advanced dementia and their (male) caregivers in the context of international nursing standards and concept of vulnerability. CONCLUSIONS: Education is key to understanding and improving the lived experience of dementia. Our article endorses the use of films in the classroom but highlights that mainstream fiction films about people (women) with dementia are not always appropriate for pedagogic purposes. Our review of three short documentary films on older men with advanced dementia uncovers an untapped teaching resource for care educators. RELEVANCE TO CLINICAL PRACTICE: Given the rising number of older men and women with advanced dementia, nurses are uniquely positioned to advocate for and mobilise support. The short documentary films reviewed in this article can engage nurses emotionally and generate discussion of ways that older men with dementia and their caregivers might be vulnerable.

Material Citizenship: An ethnographic study exploring object-person relations in the context of people with dementia in care homes.

Materiality has become an increasingly important topic in sociological studies of health care. How objects support the identity of people with dementia in care homes is an emerging area. While early research has tended to focus on sentimental or cherished items (such as photographs or keepsakes), the present study focused on functional objects (such as curling tongs or a hairdryer) as a mechanism to actualise citizenship. This article presents findings from an ethnographic study into the everyday experiences of people with dementia living in a residential care home in southern England. Drawing on a framework analysis of observations of daily life, object-elicitation interviews with residents, in-depth interviews with staff and relatives and documentary research, the findings demonstrate that object relations are a critical but overlooked site for citizenship. Residents are rarely involved in decision-making relating to their personal possessions, lack control over objects and are often discouraged from material interactions important to the maintenance and cultivation of identity. We introduce a new concept 'material citizenship' to advance thinking and practice in this area and argue that it is valuable for care practices to combine a material citizenship approach with existing care practices; thus, elevating the importance of object-person relations in dementia care.

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis.

INTRODUCTION: For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. METHOD: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. RESULTS: Four categories were revealed: (1) rooted in the past - "I am the same as before"; (2) focussing on the present - "Nobody has tomorrow"; (3) thinking about the future - "What is going to happen to me?"; and (4) changes in the experience of self over time - "I used to…." The latent overall meaning was expressed as "being engaged with the dimensions of time." DISCUSSION/CONCLUSION: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

Using lived experience to develop a personal narrative workshop programme in order to aid mental health recovery.

Background: According to Slade's Personal Recovery Framework, mental health recovery involves developing a positive identity, reframing experiences, developing self-management and valued social roles.Aim: This study explored how developing a personal narrative can support mental health recovery through reframing and developing a more positive identity. This paper provides an overview of the study's three phases and the resultant Personal Narrative Workshop Programme.Method: Phase 1 involved developing and analysing my own recovery narrative using autoethnography. Phase 2 used Participatory Action Research (PAR) to explore the experience of other service users, with co-researchers recruited to two focus groups. Six co-researchers continued into Phase 3 (three cycles of PAR) to develop the workshop programme.Results: An eight-session workshop programme was co-produced and fully documented.Conclusions: Developing a narrative is not benign: it can involve reliving trauma; and dealing with the 'voice of others' in our narratives can be difficult. As a result, the workshop programme aimed to provide a supportive environment, promoting collaboration and validation. Methodological issues resulted from the complexities of using a PAR approach, and on the multiplicity of roles for the researcher.

On being outdoors: How people with dementia experience and deal with vulnerabilities.

Vulnerability is a problematic label routinely applied to people with dementia, yet their situated experiences of vulnerability have not been prioritised or documented. Drawing on empirical data collected using a novel methodology - walking interviews with 15 people with dementia living in Southern England, followed by a sit-down interview that included a nominated family member - this paper advances understanding of how vulnerability is experienced and dealt with by people with dementia when outdoors, and at times shared with family carers. Data were analysed using abductive techniques; a thematic coding framework was created from the dataset, in addition to the application of critical theories of vulnerability and disability. We found that vulnerability is characterised by a sense of 'ontological vulnerability' for the person diagnosed with the condition - that is, an awareness of failing knowledge about oneself or the 'rules' of outdoor life, which individuals experienced emotionally and dealt with civically. People with dementia attempted to manage risks and anxieties, often doing this independently so as not to burden family members. These findings highlight how people with dementia experience and deal with vulnerability when outdoors, which others need to acknowledge and support to enable people with dementia and their families to work though these challenges, in a family-orientated way when risk planning.

Seeking freedom: A systematic review and thematic synthesis of the literature on patients' experience of absconding from hospital.

WHAT IS KNOWN ON THE SUBJECT?: Absconding refers to patients leaving psychiatric hospitals in an unexpected and/or unauthorized way and is often recognized as a form of challenging behaviour. There is some research about the rates of absconding, risks associated with it and interventions to try and reduce it; however, relatively little is known about the experience from the perspective of patients and this evidence has not previously been systematically reviewed. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Patients abscond to find relief, to regain power and control over their lives and/or to address unmet needs. Absconding can therefore be viewed as a means of seeking freedom. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Nurses need to be aware that absconding is a positive act from the patient perspective and work collaboratively with them to reduce factors which motivate this behaviour. From the point of admission, nurses have an important role to play in reducing the sense of fear, isolation and powerlessness which motivates patients to abscond. Practical interventions such as giving patients the time and information necessary to be involved in decision-making, or asking about their responsibilities and commitments outside of hospital, may have a significant impact on the experience of admission and reduce the risk of absconding. Abstract Introduction Absconding from psychiatric hospitals is associated with significant risks, but is difficult to assess. It is often considered a form of challenging behaviour for mental health nurses, yet there is little evidence considering the behaviour from the patient perspective. Aim To identify and review evidence pertaining to the experience of patients who abscond from hospital, paying particular attention to their reasons for doing so. Method A systematic review and thematic synthesis of eight peer-reviewed studies. Results The meaning patients associated with absconding is best characterized as an act of seeking freedom. Within this, four sub-themes were identified: 1) seeking freedom to find relief, 2) to regain power and control over their lives, 3) to address unmet needs and 4) opportunistically. Discussion Perspectives on absconding are markedly different between nurses and patients. Nurses may view absconding as challenging or deviant behaviour, whilst patients understand it as a positive experience. This is because the hospital environment is not meeting their needs. Implications for practice Patients decide to abscond from hospital for valid and rational reasons. Mental health nurses are in a position to understand and address the issues underpinning them with a view to reducing absconding. Further research on absconding from hospital, taking the patient's perspective, is needed.

Patient Perspectives about Spirituality and Spiritual Care.

OBJECTIVE: This study was undertaken to explore the perspectives regarding spirituality and spiritual care held by individuals with advanced disease. The aim was to gain a deeper understanding about their viewpoints surrounding spiritual care and the role of health-care professionals in providing such care. METHODS: Sixteen individuals with advanced disease and a prognosis of <12 months underwent an in-depth interview. Transcripts were subjected to a qualitative descriptive analysis to identify salient content and themes. RESULTS: Four overall themes were identified: Spirituality is personal, spiritual distress is about separation, spiritual care is about connecting, and conversations about spirituality must align with the patient's beliefs. Subthemes emphasized the individuality of spiritual expression, the potential for illness impacting spiritual beliefs, and the value of connections to one's spiritual community. Participants thought healthcare providers needed to be able to identify individuals who were experiencing a spiritual struggle, acknowledge the reality of that struggle, and connect the individual with the appropriate resource or person. CONCLUSIONS: Patients with advanced disease are likely to express their spirituality in unique ways. Being able to talk about their spiritual beliefs and doubts during illness without judgment was seen as a benefit to them. Healthcare providers ought to be able to identify those patients who require assistance in connecting to appropriate spiritual care resources.

Ageing with a learning disability: Care and support in the context of austerity.

Recent work in geography has begun to look at the opportunities for care from siblings, friends and neighbours alongside parents and spouses. This paper examines the daily relationships that middle to older age adults with a learning disability have with remaining kin members, friends, and neighbours, within the context of declining formal day services. Adults with learning disabilities are more likely to have different life course experiences and be living on low incomes and in poor housing than the rest of the population as they have had less opportunity to work and save money through their lives. We draw on two qualitative studies with adults with learning disabilities. Findings suggest that friend and kin networks are anything but certain, as opportunities to meet and socialise shrink, and connections with siblings do not necessarily lend themselves to support. The findings raise the possibility of a space of attenuated care to convey the increasingly limited fronts from which support can be derived.

Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research.

Gender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as 'people with dementia' and 'family carers' as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender-sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work.

Hearing the Suicidal Patient's Emotional Pain.

BACKGROUND: Escaping from emotional pain is a recognized driver in suicidal patients' desire to die. Formal scales of emotional pain are rarely used during routine contact between patients and their care team. No study has explored facilitators and inhibitors of emotional pain communication between staff and suicidal patients during regular care. AIMS: To identify factors impeding or facilitating emotional pain communication between patients at risk of suicide and mental health professionals. METHOD: Nine patients with a history of a medically serious suicide attempt and 26 mental health (NHS) staff participated in individualized and focus group interviews, respectively. RESULTS: A typological model was created, describing how patients either speak out or inhibit communication, and professionals may hear the communication or fail to do so. Four permutations are possible: unspoken/unheard, spoken/unheard, spoken/heard, and unspoken/heard. We found 14 subthemes of impediments and facilitators, which include misaligned, alienated and, co-bearing. LIMITATIONS: No male patients participated. CONCLUSION: Numerous factors influence whether emotional pain communication is responded to, missed, or ignored. Patients may try more than one way to communicate. Some patients fear that being able to speak out results in their emotional pain being taken less seriously. Knowledge of this model should improve the care of suicidal patients.

Suffering with dementia: the other side of "living well''.

In this editorial, we challenge the current understanding of "Living Well with Dementia." Such discourse introduces the possibility of not living well with the condition or even of "living badly with dementia." Numerous words might be relevant here - grief, pain, anguish, depression - but in this editorial we consciously use the word "suffering." This term is used for two reasons; one, because it captures the attributes of other more limited words, and, two because the language of "suffering" is contentious, making it suitable for debate. We speak of suffering, not to deny the positive aspects of life with dementia or to concentrate just on the negative, but to redress the balance that is disturbed by a relentlessly positive view of living with the condition. Our aim is to promote a more realistic understanding of the dementia experience, one based on actualities and evidence rather than presumption and sentiment.