What matters most: Exploring the everyday lives of people with dementia.

OBJECTIVES: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. METHODS: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co-researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. FINDINGS: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. CONCLUSIONS: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person-centred support.

'I can see what's going on without being nosey ': What matters to people living with dementia about home as revealed through visual home tours.

OBJECTIVES: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. METHODS: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. RESULTS: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. DISCUSSION: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.

Taking time: The temporal politics of dementia, care and support in the neighbourhood.

Dementia is a global health challenge and currently the focus of a coordinated international response articulated through the notion of 'dementia-friendly communities and initiatives' (DFCIs). Yet, while increasing research attention has been paid to the social and spatial dimensions to life with dementia in a neighbourhood setting, the temporalities of dementia have been largely overlooked. This article sets out different aspects of the lived experience of time for people with dementia and unpaid carers, before exploring the temporal politics of formal dementia care and support. The authors show that time is a site for material struggle and a marker of unequal relations of power. People with dementia and unpaid carers are disempowered through access to formal care, and this is illustrated in their loss of (temporal) autonomy and limited options for changing the conditions of the care received. The authors advocate for a time-space configured understanding of the relationship with neighbourhood and foreground a tempo-material understanding of dementia. Set against the backdrop of austerity policy in the UK, the findings reveal that ongoing budgetary restrictions have diminished the capacity for social care to mediate in questions of social justice and inequality, at times even compounding inequity.

What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home. METHODS: Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops. RESULTS: One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). CONCLUSIONS: This paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

Dementia across local districts in England 2014 to 2015.

BACKGROUND: The number of older people needing dementia care is projected to rise rapidly, and local districts are now charged with responding to this need. But evidence on local area factors of dementia is scarce. We studied the odds of dementia prevalence and its individual risk factors enriched with area factors. MATERIALS AND METHODS: This study analysed objectively assigned dementia prevalence in people aged 60 and over living in community in England, drawing data from the English Longitudinal Study of Ageing 2014 to 2015 and local districts statistics using multilevel logistic models. Dementia status is ascertained using a modified version of the Telephone Interview for Cognitive Status. A number of individual risk factors were considered including social determinants, internet use, social connections, and health behaviours; 2 contextual factors were included: the index of multiple deprivation and land use mix. RESULTS: The prevalence of dementia by this method is 8.8% (95% confidence interval 7.7%-9.2%) in older adults in England. Maps of dementia prevalence across districts showed prevalent areas. In the full model, no area characteristics were significant in predicting dementia prevalence. Education, social connections, internet use, and moderate to vigorous physical activity showed protective associations. CONCLUSION: Dementia in older adults in England is largely predicted by individual characteristics, although some districts have a large share of their population with dementia. Given the health and social care costs associated with dementia, differential interventions and support to districts and to groups of individuals defined by these characteristics seem warranted.

The lived neighborhood: understanding how people with dementia engage with their local environment.

ABSTRACTBackground:In this paper, we report progress on "Neighborhoods: our people, our places" an international study about how people living with dementia interact with their neighborhoods. The ideas of social health and citizenship are drawn upon to contextualize the data and make a case for recognizing and understanding the strengths and agency of people with dementia. In particular, we address the lived experience of the environment as a route to better understanding the capabilities, capacities, and competencies of people living with dementia. In doing this, our aim is to demonstrate the contribution of social engagement and environmental support to social health. METHODS: The study aims to "map" local spaces and networks across three field sites (Manchester, Central Scotland and Linkoping, Sweden). It employs a mix of qualitative and participatory approaches that include mobile and visual methods intended to create knowledge that will inform the design and piloting of a neighborhood-based intervention. RESULTS: Our research shows that the neighborhood plays an active role in the lives of people with dementia, setting limits, and constraints but also offering significant opportunities, encompassing forms of help and support as yet rarely discussed in the field of dementia studies. The paper presents new and distinctive insights into the relationship between neighborhoods and everyday life for people with dementia that have important implications for the debate on social health and policy concerning dementia friendly communities. CONCLUSION: We end by reflecting on the messages for policy and practice that are beginning to emerge from this on-going study.

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia.

The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: (a) literature search of previous research related to well-being and couplehood in dementia; (b) interviews with couples with dementia based on the findings of the literature search; and (c) further authentication of the findings within expert groups of people with dementia and carers. For analysis of data, we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes "Home and Neighborhood," "Meaningful Activities and Relationships," "Approach and Empowerment," and "Couplehood" with related subthemes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

The use of the truth and deception in dementia care amongst general hospital staff.

OBJECTIVES: Deceptive practice has been shown to be endemic in long-term care settings. However, little is known about the use of deception in dementia care within general hospitals and staff attitudes towards this practice. This study aimed to develop understanding of the experiences of general hospital staff and explore their decision-making processes when choosing whether to tell the truth or deceive a patient with dementia. METHOD: This qualitative study drew upon a constructivist grounded theory approach to analyse data gathered from semi-structured interviews with a range of hospital staff. A model, grounded in participant experiences, was developed to describe their decision-making processes. FINDINGS: Participants identified particular triggers that set in motion the need for a response. Various mediating factors influenced how staff chose to respond to these triggers. Overall, hospital staff were reluctant to either tell the truth or to lie to patients. Instead, 'distracting' or 'passing the buck' to another member of staff were preferred strategies. The issue of how truth and deception are defined was identified. CONCLUSION: The study adds to the growing research regarding the use of lies in dementia care by considering the decision-making processes for staff in general hospitals. Various factors influence how staff choose to respond to patients with dementia and whether deception is used. Similarities and differences with long-term dementia care settings are discussed. Clinical and research implications include: opening up the topic for further debate, implementing staff training about communication and evaluating the impact of these processes.

The experience of caring for patients with dementia within a general hospital setting: a meta-synthesis of the qualitative literature.

OBJECTIVES: The optimal care of people with dementia in general hospitals has become a policy and practice imperative over recent years. However, despite this emphasis, the everyday experience of staff caring for this patient group is poorly understood. This review aimed to synthesise the findings from recent qualitative studies in this topic published prior to January 2014 to develop knowledge and provide a framework to help inform future training needs. METHOD: A systematic search of the literature was conducted across five academic databases and inclusion/exclusion criteria applied to the retrieved papers. A meta-ethnographic approach was utilised to synthesise the resulting 14 qualitative papers. RESULTS: Five key themes were constructed from the findings: overcoming uncertainty in care; constraints of the environmental and wider organisational context; inequality of care; recognising the benefits of person-centred care; and identifying the need for training. These themes explore the opportunities and challenges associated with caring for this group of patients, as well as suggestions to improve staff experiences and patient care. CONCLUSION: The synthesis highlighted a lack of knowledge and understanding of dementia within general hospital staff, particularly with regard to communication with patients and managing behaviours that are considered challenging. This limited understanding, coupled with organisational constraints on a busy hospital ward, contributed to low staff confidence, negative attitudes towards patients with dementia and an inability to provide person-centred care. The benefits of dementia training for both ward staff and hospital management and peer discussion/support for ward staff are discussed.

Everyday conversation in dementia: a review of the literature to inform research and practice.

BACKGROUND: There has been increasing interest in dementia care in recent years, including how practitioners, service providers and society in general can help individuals to live well with the condition. An important aspect to this is provision of advice to ensure conversation partners effectively support the person with dementia in conversation. AIMS: To provide a descriptive review of the literature examining everyday conversation in dementia in order to inform practice and research. METHODS & PROCEDURES: This review used a method specifically developed for reviewing conversation analytic and related literature. A range of databases were searched using key words and explicitly described inclusion criteria leading to a final corpus of 50 titles. Using this qualitative methodology, each paper was examined and data extracted. The contribution of each of these is described and the implications for practice and research are outlined. MAIN CONTRIBUTION: This review examined studies into conversation in Alzheimer's disease, vascular dementia and Lewy body dementia, grouping these into: early influential studies; work drawing on positioning theory; studies using social and linguistic approaches; collaborative storytelling; formulaic language; studies specifically using conversation analysis; and conversation as a target for individualized therapy. In addition, more recent work examining primary progressive aphasia and behavioural variant frontotemporal dementia was explored. Overall, this review indicates that research examining conversation in natural settings provides a rich source of data to explore not just the challenges within conversation for those taking part, but also the skills retained by the person with dementia. An important aspect of this understanding is the notion that these skills relate not only to information exchange but also aspects of social interaction. The role of others in scaffolding the conversation abilities of the person with dementia and the potential of this for developing interventions are discussed. CONCLUSIONS & IMPLICATIONS: The review indicates that interventions targeting conversation in dementia are often advocated in the literature but currently such approaches remain to be systematically evaluated. In addition, many of the important insights arising from these studies have yet to inform multidisciplinary dementia care practice.

The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective.

BACKGROUND: Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group. METHODS: A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory. RESULTS: Staff generally relied on patients' self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients' ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient's communication about their pain involved several members of staff, each having to make sense of the patient's pain as in an 'overall picture'. Information about patients' pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a 'patient specific picture of the pain' required collective staff memory, 'mental computation' and time. CONCLUSIONS: There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient's pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital.

Assembling the salon: Learning from alternative forms of body work in dementia care.

This article explores the labour and experiences of a hitherto entirely overlooked section of the dementia care workforce: care-based hairdressers. Reporting on findings from the ESRC-funded 'Hair and Care' project, the analysis and discussion focus upon the 'doing of hair' in the context of dementia care. The authors challenge existing assumptions and approaches to the management of appearance in dementia care, arguing for greater recognition of the subjective and culturally meaningful qualities of a visit to the salon. The article draws upon a wider debate on body work as a framework for the discussion, and considers the employment and working conditions of this largely hidden group of workers in the care system. The article offers an account of the praxis of care-based hairdressing, with particular attention paid to narrative, intercorporeal and place-making practices in the salon, showing how a particular approach to the body shapes the labour, relationships and activities that unfold within it. The authors argue that as an alternative form of body work much can be learned from hairdressing that can inform and enhance the provision of dementia care.

Psychosocial Intervention Use in Long-Stay Dementia Care: A Classic Grounded Theory.

The objective of this study was to develop a substantive grounded theory of staff psychosocial intervention use with residents with dementia in long-stay care. "Becoming a person again" emerged as the core category accounting for staffs' psychosocial intervention use within long-stay care. Interview data were collected from participants in nine Irish long-stay settings: 14 residents with dementia, 19 staff nurses, one clinical facilitator, seven nurse managers, 21 nursing assistants, and five relatives. Constant comparative method guided the data collection and analysis. The researcher's theoretical memos, based on unstructured observation, and applicable extant literature were also included as data. By identifying the mutuality of the participants' experiences, this classic grounded theory explains staff motivation toward psychosocial intervention use within long-stay care. It also explains how institutional factors interact with those personal factors that incline individuals toward psychosocial intervention use.

Negotiating a labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia.

OBJECTIVES: There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers. METHODS: Qualitative interviews with 27 people with cognitive impairment and 26 carers (20 dyads) using four memory services before and after diagnosis disclosure were conducted. Interview transcripts were subject to constant comparative analysis and interpretations subject to discussion at regular 'analysis clinics'. RESULTS: Twelve sub-themes were identified along four points on the assessment journey. Feelings of confusion, uncertainty and anxiety over interminable waiting times dominated. Participants often felt without support to manage their uncertainties, emotions and did not know where to turn for support. Some were highly critical of the systemic process of assessment and diagnosis disclosure but were generally positive of the practice of individual professionals. CONCLUSIONS: Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers.

Dementia and the Deaf community: knowledge and service access.

OBJECTIVES: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural-linguistic status. METHODS: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18-60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18-60. Data were subjected to a thematic content analysis. RESULTS: Participants' concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia. CONCLUSIONS: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.

'Getting to Know Me': the development and evaluation of a training programme for enhancing skills in the care of people with dementia in general hospital settings.

OBJECTIVE: The aims of the study were to report on the development and evaluation of a staff training intervention in dementia care designed for use in the general hospital setting: the 'Getting to Know Me' training programme. The study also aimed to undertake initial psychometric analysis on two new outcome scales designed to measure knowledge and confidence in dementia care. METHODS: The study comprised two phases. The first phase comprised the design of two questionnaires which are shared within this paper: Confidence in Dementia (CODE) Scale and Knowledge in Dementia (KIDE) Scale. In phase two, staff undertook the 'Getting to Know Me' training programme (n=71). The impact of the programme was evaluated using a pre-post design which explored: (1) changes in confidence in dementia; (2) changes in knowledge in dementia; and (3) changes in beliefs about challenging behaviour. RESULTS: The psychometric properties of the CODE and KIDE scales are reported. Statistically significant change was identified pre-post training on all outcome measures. Clinically meaningful change was demonstrated on the CODE scale. CONCLUSIONS: The 'Getting to Know Me' programme was well received and had a significant impact on staff knowledge and confidence. Our findings add to a growing evidence base which will be strengthened by further robust studies, the exploration of the impact of staff training on direct patient outcomes, and further identification of ways in which to transfer principles of care from specialist dementia environments into general hospital settings.

Living with semantic dementia: a case study of one family's experience.

Semantic dementia is a variant of frontotemporal dementia and is a recently recognized diagnostic condition. There has been some research quantitatively examining care partner stress and burden in frontotemporal dementia. There are, however, few studies exploring the subjective experiences of family members caring for those with frontotemporal dementia. Increased knowledge of such experiences would allow service providers to tailor intervention, support, and information better. We used a case study design, with thematic narrative analysis applied to interview data, to describe the experiences of a wife and son caring for a husband/father with semantic dementia. Using this approach, we identified four themes: (a) living with routines, (b) policing and protecting, (c) making connections, and (d) being adaptive and flexible. Each of these themes were shared and extended, with the importance of routines in everyday life highlighted. The implications for policy, practice, and research are discussed.

The senses in practice: enhancing the quality of care for residents with dementia in care homes.

AIM: The study aimed to develop, deliver, and evaluate a training programme in care homes to enhance the quality of care for people living with dementia based on the principles of relationship-centred care expressed through the Senses Framework. BACKGROUND: There are increasing numbers of people living with dementia worldwide with a growing proportion requiring residential long-term care. This makes the quest for enhancing the quality of care and quality of life for people with dementia ever more pressing. DESIGN: A mixed-methods design was used adopting a Practice Development approach. The findings from one care home in the North West of England are reported. METHODS: Eight facilitated workshops based on the principles of relationship-centred care were completed and evaluated in 2010, using pre- and postintervention design. A focus group was undertaken with staff on completion of the study to gain a more comprehensive understanding of the practice/training context, augmented by case examples of changes in practice identified from the study workshops. RESULTS: Structured questionnaires were used to profile the care home before and after the training. Following the workshops, staff felt more able to collect and use biographical information. In particular, staff reported how this information supported them to initiate meaningful conversations with the person with dementia as part of everyday care routines, thus improving overall feelings of well-being. CONCLUSION: Using a biographical approach to care planning structured through the Senses Framework helped staff to develop a greater understanding of the person with dementia.

Adapting to conversation with semantic dementia: using enactment as a compensatory strategy in everyday social interaction.

BACKGROUND: Studies to date in semantic dementia have examined communication in clinical or experimental settings. There is a paucity of research describing the everyday interactional skills and difficulties seen in this condition. AIMS: To examine the everyday conversation, at home, of an individual with semantic dementia. METHODS & PROCEDURES: A 71-year-old man with semantic dementia and his wife were given a video camera and asked to record natural conversation in the home situation with no researcher present. Recordings were also made in the home environment, with the individual with semantic dementia in conversation with a member of the research team. Conversation analysis was used to transcribe and analyse the data. Recurring features were noted to identify conversational patterns. OUTCOMES & RESULTS: Analysis demonstrated a repeated practice by the speaker with semantic dementia of acting out a diversity of scenes (enactment). As such, the speaker regularly used direct reported speech along with paralinguistic features (such as pitch and loudness) and non-vocal communication (such as body posture, pointing and facial expression) as an adaptive strategy to communicate with others in conversation. CONCLUSIONS & IMPLICATIONS: This case shows that while severe difficulties may be present on neuropsychological assessment, relatively effective communicative strategies may be evident in conversation. A repeated practice of enactment in conversation allowed this individual to act out, or perform what he wanted to say, allowing him to generate a greater level of meaningful communication than his limited vocabulary alone could achieve through describing the events concerned. Such spontaneously acquired adaptive strategies require further attention in both research and clinical settings in semantic dementia and analysis of interaction in this condition, using conversation analysis, may be helpful.