Community perspectives of end-of-life preparedness.

While death is a universal human experience, the process of planning for death can be difficult and may be avoided altogether. To understand community perspectives of end-of-life preparedness, we undertook a multimethod study exploring the experiences of 25 community members and 10 stakeholders engaged in end-of-life planning. In addition, card sorting activities and focused discussions with 97 older adults were undertaken to highlight perspectives and needs. Data were analyzed using descriptive statistics and qualitative description. Overall, the participants perceived many benefits to being end-of-life prepared, however, few community members had engaged in formal planning. Key barriers include concerns about the accessibility and accuracy of information, discomfort when engaging in end-of-life conversations, and perceptions about the cost associated with engaging in formal legal or financial preparations. Areas for further research include the need for studies that capture the cultural dimensions of end-of-life planning and explores the implementation and evaluation of community-based interventions to improve preparedness.

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis.

BACKGROUND: Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. METHODS: Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. RESULTS: We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. CONCLUSIONS: To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Managing diabetes in people with dementia: a realist review.

BACKGROUND: Dementia and diabetes mellitus are common long-term conditions that coexist in a large number of older people. People living with dementia and diabetes may be at increased risk of complications such as hypoglycaemic episodes because they are less able to manage their diabetes. OBJECTIVES: To identify the key features or mechanisms of programmes that aim to improve the management of diabetes in people with dementia and to identify areas needing further research. DESIGN: Realist review, using an iterative, stakeholder-driven, four-stage approach. This involved scoping the literature and conducting stakeholder interviews to develop initial programme theories, systematic searches of the evidence to test and develop the theories, and the validation of programme theories with a purposive sample of stakeholders. PARTICIPANTS: Twenty-six stakeholders (user/patient representatives, dementia care providers, clinicians specialising in dementia or diabetes and researchers) took part in interviews and 24 participated in a consensus conference. DATA SOURCES: The following databases were searched from 1990 to March 2016: MEDLINE (PubMed), Cumulative Index to Nursing and Allied Health Literature, Scopus, The Cochrane Library (including the Cochrane Database of Systematic Reviews), Database of Abstracts of Reviews of Effects, the Health Technology Assessment (HTA) database, NHS Economic Evaluation Database, AgeInfo (Centre for Policy on Ageing - UK), Social Care Online, the National Institute for Health Research (NIHR) portfolio database, NHS Evidence, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (Google Inc., Mountain View, CA, USA). RESULTS: We included 89 papers. Ten papers focused directly on people living with dementia and diabetes, and the rest related to people with dementia or diabetes or other long-term conditions. We identified six context-mechanism-outcome (CMO) configurations that provide an explanatory account of how interventions might work to improve the management of diabetes in people living with dementia. This includes embedding positive attitudes towards people living with dementia, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. A general metamechanism that emerges concerns the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. A flexible service model for people with dementia and diabetes would enable this synergy in a way that would lead to the improved management of diabetes in people living with dementia. LIMITATIONS: There is little evidence relating to the management of diabetes in people living with dementia, although including a wider literature provided opportunities for transferable learning. The outcomes in our CMOs are largely experiential rather than clinical. This reflects the evidence available. Outcomes such as increased engagement in self-management are potential surrogates for better clinical management of diabetes, but this is not proven. CONCLUSIONS: This review suggests that there is a need to prioritise quality of life, independence and patient and carer priorities over a more biomedical, target-driven approach. Much current research, particularly that specific to people living with dementia and diabetes, identifies deficiencies in, and problems with, current systems. Although we have highlighted the need for personalised care, continuity and family-centred approaches, there is much evidence to suggest that this is not currently happening. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to the needs of people living with dementia and diabetes. STUDY REGISTRATION: This study is registered as PROSPERO CRD42015020625. FUNDING: The NIHR HTA programme.

What Works to Improve and Manage Fecal Incontinence in Care Home Residents Living With Dementia? A Realist Synthesis of the Evidence.

The prevalence of fecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. Using realist synthesis, 6 potential program theories of what should work were identified. These addressed clinician-led support, assessment, and review; the contribution of teaching and support for care home staff on how to reduce and manage FI; addressing the causes and prevention of constipation; how cognitive and physical capacity of the resident affects outcomes; how the potential for recovery, reduction, and management of FI is understood by those involved; and how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Dementia was a known risk factor for fecal incontinence (FI), but how it affected uptake of different interventions or the dementia specific continence and toileting skills staff require, were not addressed in the literature. There was a lack of dementia-specific evidence on continence aids. Most care home residents with FI will be doubly incontinent; there is, therefore, limited value in focusing solely on FI or single causes, such as constipation. Medical and nursing support for continence care is an important resource, but it is unhelpful to create a distinction between what is continence care and what is personal or intimate care. Prompted toileting is an approach that may be particularly beneficial for some residents. Valuing the intimate and personal care work unqualified and junior staff provide to people living with dementia and reinforcement of good practice in ways that are meaningful to this workforce are important clinician-led activities. Providing dementia-sensitive continence care within the daily work routines of care homes is key to helping to reduce and manage FI for this population.

Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence.

BACKGROUND: Eighty per cent of care home residents in the UK are living with dementia. The prevalence of faecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. OBJECTIVE: To provide a theory-driven explanation of the effectiveness of programmes that aim to improve FI in people with advanced dementia in care homes. DESIGN: A realist synthesis. This was an iterative approach that involved scoping of the literature and consultation with five stakeholder groups, a systematic search and analysis of published and unpublished evidence, and a validation of programme theories with relevant stakeholders. DATA SOURCES: The databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, Scopus, SocAbs, Applied Social Sciences Index and Abstracts, BiblioMap, Sirius, OpenGrey, Social Care Online and the National Research Register. RESULTS: The scoping identified six programme theories with related context-mechanism-outcome configurations for testing. These addressed (1) clinician-led support, assessment and review, (2) the contribution of teaching and support for care home staff on how to reduce and manage FI, (3) the causes and prevention of constipation, (4) how the cognitive and physical capacity of the resident affect outcomes, (5) how the potential for recovery, reduction and management of FI is understood by those involved and (6) how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Data extraction was completed on 62 core papers with iterative searches of linked literature. Dementia was a known risk factor for FI, but its affect on the uptake of different interventions and the dementia-specific continence and toileting skills staff required was not addressed. Most care home residents with FI will be doubly incontinent and, therefore, there is limited value in focusing solely on FI or on single causes of FI such as constipation. Clinical assessment, knowledge of the causes of FI and strategies that recognise the individuals' preferences are necessary contextual factors. Valuing the intimate and personal care work that care home staff provide to people living with dementia and addressing the dementia-related challenges when providing continence care within the daily work routines are key to helping to reduce and manage FI in this population. LIMITATIONS: The synthesis was constrained by limited evidence specific to FI and people with dementia in care homes and by the lack of dementia-specific evidence on continence aids. CONCLUSIONS: This realist synthesis provides a theory-driven understanding of the conditions under which improvement in care for care home residents living with dementia and FI is likely to be successful. FUTURE WORK: Future multicomponent interventions need to take account of how the presence of dementia affects the behaviours and choices of those delivering and receiving continence care within a care home environment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42014009902. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

What works for whom in the management of diabetes in people living with dementia: a realist review.

BACKGROUND: Dementia and diabetes mellitus are common long-term conditions and co-exist in a large number of older people. People living with dementia (PLWD) may be less able to manage their diabetes, putting them at increased risk of complications such as hypoglycaemia. The aim of this review was to identify key mechanisms within different interventions that are likely to improve diabetes outcomes in PLWD. METHODS: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories and their validation with a purposive sample of stakeholders. Twenty-six stakeholders - user/patient representatives, dementia care providers, clinicians specialising in diabetes or dementia and researchers - took part in interviews, and 24 participated in a consensus conference. RESULTS: We included 89 papers. Ten focused on PLWD and diabetes, and the remainder related to people with either dementia, diabetes or other long-term conditions. We identified six context-mechanism-outcome configurations which provide an explanatory account of how interventions might work to improve the management of diabetes in PLWD. This includes embedding positive attitudes towards PLWD, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. An overarching contingency emerged concerning the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. CONCLUSIONS: Evidence highlighted the need for personalised care, continuity and family-centred approaches, although there was limited evidence that this happens routinely. This review suggests there is a need for a flexible service model that prioritises quality of life, independence and patient and carer priorities. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to their needs. TRIAL REGISTRATION: PROSPERO, CRD42015020625. Registered on 18 May 2015.

Supporting shared decision-making for older people with multiple health and social care needs: a protocol for a realist synthesis to inform integrated care models.

INTRODUCTION: Including the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models. METHODS AND ANALYSIS: The synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction. ETHICS AND DISSEMINATION: Ethics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting.

A randomised control trial of the cognitive effects of working in a seated as opposed to a standing position in office workers.

Sedentary behaviour is increasing and has been identified as a potential significant health risk, particularly for desk-based employees. The development of sit-stand workstations in the workplace is one approach to reduce sedentary behaviour. However, there is uncertainty about the effects of sit-stand workstations on cognitive functioning. A sample of 36 university staff participated in a within-subjects randomised control trial examining the effect of sitting vs. standing for one hour per day for five consecutive days on attention, information processing speed, short-term memory, working memory and task efficiency. The results of the study showed no statistically significant difference in cognitive performance or work efficiency between the sitting and standing conditions, with all effect sizes being small to very small (all ds < .2). This result suggests that the use of sit-stand workstations is not associated with a reduction in cognitive performance. Practitioner Summary: Although it has been reported that the use of sit-stand desks may help offset adverse health effects of prolonged sitting, there is scant evidence about changes in productivity. This randomised control study showed that there was no difference between sitting and standing for one hour on cognitive function or task efficiency in university staff.

Reducing and managing faecal incontinence in people with advanced dementia who are resident in care homes: protocol for a realist synthesis.

INTRODUCTION: Faecal incontinence (FI) is the involuntary loss of liquid or solid stool that is a social or hygienic problem. The prevalence of FI in residents of care homes is high, but it is not an inevitable consequence of old age or dementia. There is good evidence on risk factors, but few studies provide evidence about effective interventions. There is a need to understand how, why, and in what circumstances particular programmes to reduce and manage FI are effective (or not) for people with dementia. The purpose of this review is to identify which (elements of the) interventions could potentially be effective, and examine the barriers and facilitators to the acceptability, uptake and implementation of interventions designed to address FI in people with dementia who are resident in care homes. METHODS AND ANALYSIS: A realist synthesis approach to review the evidence will be used which will include studies on continence, person-centred care, implementation research in care homes, workforce and research on care home culture. An iterative four-stage approach is planned. Phase 1: development of an initial programme theory or theories that will be 'tested' through a first scoping of the literature and consultation with five stakeholder groups (care home providers, user representatives, academics and practice educators, clinicians with a special interest in FI and continence specialists). Phase 2: a systematic search and analysis of published and unpublished evidence to test and develop the programme theories identified in phase 1. Phase 3: validation of programme theory/ies with a purposive sample of participants from phase 1. ETHICS AND DISSEMINATION: The overall protocol does not require ethical review. The University research ethics committee will review interviews conducted as part of phase 1 and 3. The final fourth phase will synthesise and develop recommendations for practice and develop testable hypotheses for further research.