The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia. This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care). Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Objective: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes. Methods: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts. Findings: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth. Conclusions: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care

Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia

Understanding the shared experiences of creating a digital life story with individuals with dementia and their spouse

IntroductionLife story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further research is required to explore experiences of life story work as a shared endeavour. Furthermore, the use of technology to create life stories is growing, with little known about how digital elements are experienced. This study aimed to understand these gaps by exploring the shared experiences of individuals with dementia and their partner/spouse creating a digital life story book.Design and MethodsFour couples participated in the six-week creation of their digital life story book. Following this, qualitative data relating to couples’ experiences were collected via semi-structured interviews.FindingsThematic analysis was used to interpret data and identified four superordinate themes relating to the shared experiences of creating their digital life story book: ‘Creating a life story book is a huge undertaking’, ‘Looking back and looking forward: The emotional journey’, ‘Whose story is it and who does it belong to?’ and ‘Challenges of using technology to build the life story book’.ConclusionsOverall, this study demonstrated that creating a digital life story was a positive experience that can support couples’ well-being, but we should not underestimate the time it will take and range of emotions experienced. The experience of using technology varied, emphasising that we must be mindful of individual preferences before considering a digital approach

’I am teaching them and they are teaching me’: Experiences of teaching Alexander Technique to people with dementia

Introduction: To enable people with dementia to live well we must support the person as a whole. The Alexander Technique (AT) offers an approach which addresses both physical and psychological issues which may be suitable to help people with dementia. In this new area of research, this study aimed to establish whether the AT is currently taught to people with dementia and if so to bring together the experiences of AT teachers in relation to the perceived benefits and suitability of the AT for this group.Methods: This qualitative study included data from responses to survey questions, interview transcripts and published articles.Results : A total of 84 AT teachers took part in an international survey of whom 18 (21%) had taught one or more people with dementia. Thematic analysis generated the following superordinate themes: ‘The AT can help people with dementia’, ‘How change comes about’, and ‘Adapting the AT for people with dementia’.Conclusions : AT teachers described perceiving improvements in movement, pain and flexibility; increased calm, sociability and environmental awareness. They highlighted the reciprocal nature of the relationship between teacher and student and highly valued this. Touch was seen as a key means of communication, helping people with dementia to feel safe. It seems that the AT does not require major adaptation to work with this group although the challenges of working in a care setting were discussed. The AT offers the potential to be a valuable intervention for people with dementia and further research is warranted

The Meaning and Experience of Gratitude for People Living with Dementia

RationaleSupporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical groups, but no studies have explored how gratitude is experienced by people living with dementia.MethodsIn this mixed-methods study, eight people living with dementia shared their experiences of gratitude through interviews and gratitude diaries. Qualitative data were analysed using interpretative phenomenological analysis. Quantitative data regarding diary use were analysed using descriptive statistics.Findings and ConclusionsGratitude holds interpersonal and transpersonal meanings for people living with dementia, balanced with challenges of dementia and ageing. This study offers insight into the existence and relevance of gratitude for people living with dementia, highlighting the importance of using multiple methods in dementia research. Positive psychology interventions informed by these findings may be effective in supporting well-being for people with dementia

The use of everyday technologies to enhance wellbeing and enjoyment for people living with dementia: A systematic literature review and narrative synthesis grounded in qualitative data

BackgroundEveryday technologies, such as laptops and tablets, are often used for enjoyment, pleasure, leisure and social participation. Despite this, whilst considerable research has investigated exploring people’s experiences of using assistive technologies, it is not clear how everyday technologies are experienced by individuals living with dementia. The aims of this review were to explore the experiences and views of people living with dementia and carers about using everyday technology to enhance their well-being and enjoyment, social engagement, participation and leisure as well as understand their views about the usability of everyday technology in dementia.MethodsA systematic search of the literature was conducted using the electronic databases: PsycINFO, PsycARTICLES, CINAHL Complete and EThOS. Five qualitative studies and five mixed-method studies were included and synthesised using a narrative approach. The methodological quality of the studies was assessed using the National Institute for Health and Care Excellence Qualitative Quality Appraisal, which uncovered key variation in the quality of the included, synthesised studies.FindingsThe review suggests that everyday technologies can help support well-being, particularly when technology is used in a group setting and when individuals received the right amount of support to help engage in the technology. Four major themes relating to experiences and views were derived from the findings of the 10 included studies: ‘Technology use maintaining a sense of identity’, ‘Assumptions held by the self and others’, ‘The importance of others’ and ‘The usability of technology influencing effective engagement’.ConclusionsOverall, everyday technologies appear to have a positive impact on different aspects of the well-being of people living with dementia. Clinical implications of these findings include supporting opportunities for people living with dementia to use everyday technology for enjoyment and making these technologies more widely available and accessible

Me, myself, and nature: living with dementia and connecting with the natural world – more than a breath of fresh air? A literature review

Objective: Depsite the growing awareness of the importance of engagement with the natural world for people living with dementia, little is known about the impact specifically for people living independently in their own home. This review identifies, analyses and synthesises existing research, incorporating first-person narrative accounts of the benefits and potential challenges experienced inforging meaningful connections with the natural world.Methods: Six databases were searched from February 2000 to February 2021. Relevant organisations and authors were contacted, and a hand search of included study reference lists was conducted. The findings of included studies were synthesised using a thematic analysis approach.Findings: Sixteen studies were included: 13 qualitative and three mixed methods. Eight themes and three sub-themes were identified, revealing how contact with the natural world held a significancefor people living with dementia, associated with a sense of pleasure, comfort, stimulation, freedom and meaning. Support and the use of adaptive strategies afforded opportunities for continued engagement with meaningful outdoor activities and the promotion of identity, independence, social interaction, enhanced wellbeing and quality of life for people living independently with dementia.Conclusion: Meaningful connections with the natural world offer far more than a ‘breath of freshair’. When support mechanisms are in place, engaging with the natural world can be a valuable arenafor enablement and continuity, providing a sense of connectedness to self, place and others

Shared experiences of resilience amongst couples where one partner is living with dementia - a grounded theory study

Resilience is a concept which may help explain how older people are able to live well with dementia. Existing resilience research in dementia focuses on the caregiver and relatively little is known about how dyads (person with dementia and care partner) experience resilience. Using constructivist grounded theory, this qualitative study aimed to develop a theory of shared resilience amongst couples where one partner is living with dementia. Interviews were conducted with 12 dyads (n = 24) to explore their shared understanding of resilience, what helps to develop and maintain their resilience and how resilience shapes their relationship and mutual well-being. Findings indicate that resilience was experienced as continuing with a “normal” life as a couple notwithstanding the impact of dementia. This is in contrast to models of resilience which emphasize bouncing back or flourishing in the face of adversity. Instead, couples described a shared resilience that enabled them to maintain their couplehood, a sense of togetherness and reciprocity in their relationship, which in turn provided a further source of resilience. Findings emphasize the importance of dyadic research in developing a clearer understanding of the experience of living well with dementia. Interventions aimed at building resilience should engage dyads to consider how the couple’s shared resilience can be maintained and enhanced

Resilience in older people living with dementia – A narrative analysis

Dominant discourses surrounding dementia tend to focus on narratives of loss and decline. Simultaneously, individuals living with dementia are vulnerable to being dispossessed of personal narratives supportive of identity and well-being. How older people with dementia story their experiences of resilience in this context has not previously been investigated. In response, this qualitative study utilised a narrative approach to understand lived experiences of resilience shared by eight older people living with dementia. Structural analyses indicated that participants’ personal narratives regarding resilience in living with dementia contained distinct and common phases (The Diagnosis, Initial Tasks, 'The High Point', Reflecting on Limitations and Focusing on Today) as well as a variety of dynamic characters. Overarching themes within participants’ narratives included sense of self/identity, being connected to others, sense of agency and having positive attitudes. Participants narrated richer, more active personal stories than those typically represented in dominant social discourses surrounding dementia. As such, their narratives depict lived experiences of resilience that unfolded over time in response to adversity and uncertainty and involved a dialectical process in relation to adjustment and well-being. The findings have important implications for the way resilience in living with dementia is framed and supported