An ethnography of mealtime care for people living with dementia in care homes.

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes.

Exploring dental treatment decision-making experiences of people living with dementia and family carers.

INTRODUCTION: People living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision-making and patients' experiences of this process have not been comprehensively researched. OBJECTIVE: This study aimed to explore the dental treatment decision-making perspectives and experiences of people living with dementia and their family members. METHODS: Semi-structured interviews were undertaken with 8 people living with dementia and 17 family caregivers. A constructivist grounded theory approach was adopted, using a maximum variation sample. Qualitative data collection and analysis occurred concurrently. Data underwent initial open coding followed by more focused coding, supported by reflexive memo writing, which supported data categorisation. RESULTS: People living with dementia reported wanting to be understood as unique individuals with specific needs. All participants described wanting to be actively involved in dental treatment decisions. However, many felt that they were insufficiently involved in treatment decision-making. This perceived underinvolvement meant that some people living with dementia and family members felt the treatment outcomes they sought were neither discussed nor considered. CONCLUSION: People living with dementia and carers had specific expectations of dental care yet felt passive in decision-making despite their desire to be involved in this process. Dentists should seek to actively establish patients' preferences, regardless of mental capacity and consider these in discussions and decisions about dental treatment.

Facilitating social coping-'seeking emotional and practical support from others'-as a critical strategy in maintaining the family care of people with dementia.

The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established 'coping' as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed 'social coping' (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term.

Exploring online identity construction for the caregivers of adults living with dementia and the value of interactions with health and social care professionals.

Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172 entries) were selected through purposive and snowball sampling, and discourse analysis was used to analyse online identity construction for informal caregivers of adults living with dementia. Six areas of online identity construction were identified: changing family role; powerful expert social campaigner; being an advocate; guardian of their relative's selfhood; sustaining creative and spiritual individuality and wider community member in online and real life. Further to this, the importance of health and social care service interactions in the development of caregiver identity revealed that professionals must ensure person-centred service contacts for caregivers. This is a challenging task in the pandemic climate where interactions between health and social care professionals and caregivers are limited due to isolation measures. It is evident that the blog format can provide a forum through which the identity of the caregiver of an adult living with dementia can evolve. The six areas of identity construction reveal the multifaceted nature of identity for the caregiver and the value of belonging to an online community both in relation to identity construction and support. This finding is especially applicable in the current pandemic when accessing a face-to-face community is challenging for caregivers who may be shielding or living in isolation. The findings of this research can aid health and social care professionals in understanding the development of caregiver identity and in providing appropriate support during service interactions, on accessing virtual and face to face community support.

How do we provide good mealtime care for people with dementia living in care homes? A systematic review of carer-resident interactions.

People with dementia who live in care homes often depend on care home staff for help with eating and drinking. It is essential that care home staff have the skills and support they need to provide good care at mealtimes. Good mealtime care may improve quality of life for residents, and reduce hospital admissions. The aim of this systematic review was to identify good practice in mealtime care for people with dementia living in care homes, by focusing on carer-resident interactions at mealtimes. Robust systematic review methods were followed. Seven databases were searched: AgeLine, BNI, CENTRAL, CINAHL, MEDLINE, PsycINFO and Web of Science. Titles, abstracts, and full texts were screened independently by two reviewers, and study quality was assessed with Joanna Briggs Institute tools. Narrative synthesis was used to analyse quantitative and qualitative evidence in parallel. Data were interrogated to identify thematic categories of carer-resident interaction. The synthesis process was undertaken by one reviewer, and discussed throughout with other reviewers for cross-checking. After title/abstract and full-text screening, 18 studies were included. Some studies assessed mealtime care interventions, others investigated factors contributing to oral intake, whilst others explored the mealtime experience. The synthesis identified four categories of carer-resident interaction important to mealtime care: Social connection, Tailored care, Empowering the resident, and Responding to food refusal. Each of the categories has echoes in related literature, and provides promising directions for future research. They merit further consideration, as new interventions are developed to improve mealtime care for this population.

Developing a dementia care leaders' toolkit for older patients with cognitive impairment.

A recent review of the progress that has been made in meeting the government's Challenge on Dementia 2020 detailed the variability, and in some cases suboptimal quality, of hospital care for people with dementia. The review also identified the need for improvements in assessing the individual needs of people with dementia while in hospital, including their emotional and social needs. This article focuses on the development and implementation of an evidence-based toolkit to improve the hospital care of older patients with cognitive impairment, including dementia and/or delirium. The toolkit's focus is on optimising the patient experience of people with cognitive impairment who have been admitted to hospital. The toolkit also promotes the importance of person-centred care and communication skills.

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.

BACKGROUND: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. REVIEW QUESTION: What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? METHODS: A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. RESULTS: Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. CONCLUSION: Decision-making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision-making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision-specific interventions are unlikely to produce benefit in other decision contexts. PATIENT INVOLVEMENT: Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

Exploring medicines reconciliation in the emergency assessment unit: staff perceptions and actual waiting times.

BACKGROUND: Medicines reconciliation is the process of creating and maintaining the most accurate list possible of all medicines a patient is taking. If medicines reconciliation cannot be completed in a timely manner in hospital emergency assessment units (EAUs), delays in treatment can occur, potentially leading to deterioration of long-term and acute conditions, patient distress and complaints. AIM: To obtain the perspectives of staff working on an EAU regarding the time patients wait for their medicines to be prescribed, including their awareness of practice and protocols. To determine the time from admission to the EAU until medicines reconciliation, and to identify if there was any time difference in medicines reconciliation according to the day of admission. METHOD: This was a service evaluation in which staff working in one EAU in a teaching hospital in the north east of England were asked to complete a survey in December 2017. The staff survey aimed to ascertain: whether staff were aware of any guidance relating to medicines reconciliation times; how long they thought the average waiting time was for medicines reconciliation; and if they thought there were implications for patients or staff as a result of time spent waiting for medicines reconciliation. In addition, an audit was performed analysing medicines reconciliation times for all patients admitted to the EAU during the month of December 2017. RESULTS: A total of 30 staff members responded to the survey. While 40% ( n =12) of respondents believed that the EAU had an efficient system in place for timely medicines reconciliation, 90% ( n =27) believed the unit could still improve. Almost half the respondents (47%, n =14) perceived a delay in medicines reconciliation could result in exacerbation of patients' physical conditions. The clinical audit identified considerable variation in medicines reconciliation times, ranging from seven minutes to almost 24 hours. However, most medicines (82%) were reconciled within six hours. CONCLUSION: This service evaluation found that the median time after arrival in the EAU until completion of medicines reconciliation was two hours 48 minutes. However, almost one fifth of patients had to wait for more than six hours, and in one instance almost 24 hours. One potential solution could be increasing the involvement of hospital pharmacists or pharmacy technicians in medicines reconciliation.

Training interventions to improve general hospital care for older people with cognitive impairment: systematic review.

BACKGROUND: In response to increasing numbers of older people in general hospitals who have cognitive impairment such as dementia and delirium, many hospitals have developed education and training programmes to prepare staff for this area of clinical practice.AimsTo review the evidence on educational interventions on hospital care for older people with cognitive impairment. METHOD: A mixed methods systematic review and narrative synthesis was undertaken. The following electronic databases were searched: Medline, Embase, CINAHL, PsycINFO, EBM Reviews, ASSIA and Scopus, as well as Health Management Information Consortium (HMIC), ProQuest, PubMed and SCIE: Social Care Online. Initial searches were run in August 2014 (update search September 2016). Titles and abstracts of studies retrieved were screened independently. The full text of eligible studies were then independently assessed by two review team members. All included studies were assessed using a standard quality appraisal tool. RESULTS: Eight studies relating to delirium, six on dementia and two on delirium and dementia were included, each testing the use of a different educational intervention. Overall, the quality of the studies was low. In relation to delirium, all studies reported a significant increase in participants' knowledge immediately post-intervention. Two of the dementia studies reported an increase in dementia knowledge and dementia confidence immediately post-intervention. CONCLUSIONS: The variety of outcomes measured makes it difficult to summarise the findings. Although studies found increases in staff knowledge, there is insufficient evidence to conclude that educational interventions for staff lead to improved patient outcomes.Declaration of interestNone.

Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia.

Across the world, an early and timely diagnosis of dementia is seen to be a policy and practice imperative and a necessary step in order to live well with the condition. However, limited understanding exists regarding the personal and relational meanings attributed to the diagnostic experience. Drawn from the findings of a larger multi-site study conducted in four areas of England, this article presents a subset of the data where five participants and their carers and two people living alone initially presented themselves at a memory clinic for diagnostic testing, with this presentation eventually resulting in a confirmed, and shared, diagnosis of dementia. All 12 participants were interviewed at two time points in the study: at the time of first presentation to the memory clinic and shortly after the diagnosis had been shared with them. Informed by the grounded theory method, constant comparative analysis was applied to the data and this process resulted in a four-phase sequential model of diagnostic transition: (1) becoming self-aware→seeking outside help; (2) being referred→receiving a clinic appointment; (3) undergoing tests→being told what's wrong; and (4) adjusting to the diagnosis→negotiating everyday expectations. Running through each phase was the core category of 'living with uncertainty' which summarised the entire diagnostic journey for all study participants. Findings suggest a need for better awareness and information for people living with dementia at all phases and time points in the condition, which may be fostered by embedding these in early clinical encounters.

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.

Patients' and carers' views on communication and information provision when undergoing assessments in memory services.

OBJECTIVES: To explore patients' and carers' views on what constitutes high-quality communication and information provision during diagnostic assessment in memory clinic services in three areas of England. METHODS: Interviews with 27 people with cognitive impairment (13 with confirmed dementia) and 26 carers (20 matched pairs). Interviews continued until theoretical saturation was reached. Interview transcripts were subject to constant comparative analysis; data interpretation occurred in 'data clinics'. RESULTS: People with memory problems undergoing assessment often have unmet information needs, especially patients with a diagnosis other than Alzheimer's disease and those who do not receive a diagnosis. Patients wish to be kept informed about both the assessment and its outcomes. Some have unrealistic expectations of the process (expecting assessment and diagnosis to be complete in two weeks) and some experience what appear to be long delays (over 12 months) in receiving results. Most appreciated clear and honest communication about any diagnosis. Post-diagnostic groups, organized by local memory services, afford opportunities to learn practical strategies and gain informal peer support. Voluntary organizations may be an essential source of information. CONCLUSIONS: Communication and information need improvement for patients undergoing assessment for possible dementia, especially for those considered unlikely to benefit from medication and those with mild cognitive impairment.

From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences.

BACKGROUND: The National Dementia Strategy in England stressed the importance of earlier diagnosis of dementia. In-depth knowledge of the experiences of patients using such services remains an evidence gap. AIM: To increase understanding of the experiences of people developing dementia and of their carers, to inform practice and decision making. DESIGN AND SETTING: A retrospective and prospective qualitative interview study of participants recruited from four memory clinics in London, the north-west and the north-east of England. METHOD: Purposive sampling was used to recruit 27 individuals with memory problems and 26 supporters and carers. Interviews explored referral pathways, assessment processes, disclosure of the diagnosis, experiences of being prescribed medication to help with symptoms, and issues of risk and decision making. RESULTS: Few participants experienced the process of memory assessment as patient centred. Where assessment processes were lengthy and drawn out, participants experienced considerable uncertainty. Many experienced tests and assessments as distressing, sometimes in settings that were perceived as alarming or potentially stigmatising by association. Information provision and communication were variable and practitioners were not always thought to help people to make sense of their experiences. CONCLUSION: The transition from the early stages of cognitive impairment is not straightforward. There is potentially much uncertainty and waiting. Primary care practitioners may be better able to provide tailored support to individuals and their carers during this time if they are aware of what patients are anticipating and are informed about the diagnostic 'journey' by the insights of those who have experienced it.

Responding to vulnerability in old age: patient-centred care.

Patient-centred care is a term widely used in health policy and is familiar to staff as a principle or commonly agreed approach to care. However, nursing and multidisciplinary teams often do not agree how it should be provided for older patients. This article outlines three different models of patient-centred care applicable to the care of older people. The article also explores the concept of vulnerability in old age, highlighting differences between the perspectives of older people and those of professionals and how clinical practice can be improved to achieve a more patient-centred approach. The links between patient-centred care and vulnerability in old age are considered along with the implications of this for clinical practice.

Practice question.

In recent years pressure ulcers have been seen as an unacceptable consequence of poor nursing care (The Telegraph 2011) and staff have questioned whether the development of a pressure ulcer should lead to a referral via adult safeguarding procedures. There are no national guidelines. Some safeguarding adults boards have strict criteria, with all pressure ulcers of a certain grade or above being referred, regardless of individual circumstances. This leaves no flexibility to consider the root cause of the ulcer and whether there are specific safeguarding issues.

Improving interprofessional practice for vulnerable older people: gaining a better understanding of vulnerability.

A key focus for professionals working with older people in the community is on those who are vulnerable, although this vulnerability is not well defined. This study sought the views of health and social care professionals and older people on vulnerability, identifying significant differences between professional and older people's perspectives. It found that for older people, vulnerability is an emotional response to being in a specific situation, whereas for professionals, the vulnerability of those on their case loads relates to them having certain or a combination of characteristics (physical, psychological and social). The paper concludes that interprofessional care for older people in the community could be improved firstly by asking older people if they ever feel vulnerable and if so, in what situations and secondly by focusing team efforts on addressing the issues raised by older people in response to these questions.