How do quantitative studies involving people with dementia report experiences of standardised data collection? A narrative synthesis of NIHR published studies.

BACKGROUND: People with dementia are routinely included as research participants in trials and other quantitative studies in which they are invited to respond to standardised measures. This paper reviews the reporting of standardised data collection from people with dementia in reports published in the National Institute for Health and Care Research (NIHR) Journals Library. The aim was to understand how the administration of standardised, self-report measures with people with dementia is reported in NIHR monographs and what could be learnt from this about the feasibility and acceptability of data collection approaches for future studies. METHODS: This was a systematic review with narrative synthesis. Broad search terms (Dementia OR Alzheimer*) were used to search the NIHR Journals Library website in December 2021. All studies that used (or intended to use) standardised measures to collect research data directly from people with dementia were eligible for inclusion. Information was extracted (where reported) on the process of data collection, dementia severity, levels of missing data and the experiences and reflections of those involved. RESULTS: Searches returned 42 records, from which 17 reports were assessed as eligible for inclusion, containing 22 studies. Response rates from participants with dementia in these studies varied considerably and appeared to be related to dementia severity and place of residence. Little information was reported on the process of data collection or the reasons for missing data, and most studies did not report the experiences of participants or those administering the measures. However, there was an indication from two studies that standardised data collection could provoke emotional distress in some participants with dementia. CONCLUSIONS: Through this review we identified both variation in levels of missing data and gaps in reporting which make it difficult to ascertain the reasons for this variation. We also identified potential risks to the well-being of participants with dementia which may be associated with the content of standardised measures and the context of data collection. Open reporting of and reflection upon data collection processes and the experiences of people involved is essential to ensure both the success of future data collection and the wellbeing of study participants. TRIAL REGISTRATION: Registered with Research on Research https://ror-hub.org/study/2905/ .

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants' rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.

BACKGROUND: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. METHODS: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. FINDINGS: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. CONCLUSION: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.

BACKGROUND AND OBJECTIVES: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. RESEARCH DESIGN AND METHODS: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. FINDINGS: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. CONCLUSIONS: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

Social care causes of delayed transfer of care (DTOC) from hospital for older people: Unpicking the nuances of 'provider capacity' and 'patient choice'.

Unnecessarily prolonged stays in hospitals can have negative impacts on patients and present avoidable costs to health and social care systems. This paper presents the qualitative findings of a multi-methods study of the social care causes of delayed transfers of care (DTOC) for older people in England. The quantitative strand of this study found that DTOC are significantly affected by homecare supply. In this paper, we explore in depth how and why social care capacity factors lead to delays, from the perspectives of those working within the system. We examined the local transfer arrangements in six English local authority (LA) sites that were purposively sampled to include a range of DTOC performance and LA characteristics. Between March and December 2018, 52 professionals involved in arranging or facilitating discharge from hospitals in these sites provided qualitative data, primarily through semi-structured interviews. Topics included discharge teams and processes, strategic issues and perceived causes of delays. The thematic analysis uncovered the nuances behind the causes of DTOC previously categorised broadly as 'provider capacity' and 'patient choice'. In particular, our analysis highlights the lack of fit between available provision and the needs of people leaving hospital (theme 1); workforce inconsistencies (theme 2) and a myth of patient choice (theme 3). We are now at a turning point in the development of policy to reduce DTOC in the English system, with the full implications of a new national discharge to assess programme yet to be seen. Our research shows the significance of the alignment of service capacity, including the type and location of provision, with the needs and preferences of those leaving hospital. As the new system becomes established, attendance to such nuances behind blockages in the system will be more important than ever.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

How local partnerships to improve urgent and emergency care have impacted delayed transfers of care from hospitals in England: an analysis based on a synthetic control estimation method.

OBJECTIVES: Patients should be discharged from hospital when they are medically fit. However, discharges are often delayed for non-medical reasons including access to social care. One aim of local health and social care partnerships to improve urgent and emergency care in England (known as urgent and emergency care (UEC) vanguards) was to improve integration of health and social care, which could lead to fewer delays. Consequently, we aimed to assess the impact of UEC vanguards on delayed discharges from hospital (delayed transfers of care (DTOC)) in England. DESIGN: Using a synthetic control estimation method 29 local authorities (LAs) that were UEC vanguards partners were averaged into a single 'treated' unit and compared with a unit created using data from LAs that were not UEC vanguards partners to estimate the impact of UEC vanguards on DTOC. Sensitivity analysis included fixed effects panel regressions and various placebo tests. SETTING: 150 LAs in England (excluding city of London and Isles of Scilly); 29 LAs were partners in UEC vanguards between August 2015 and March 2018. PRIMARY OUTCOME MEASURE: Quarterly data on days of DTOC at LA level for the period 2010-2017. RESULTS: Synthetic control estimation showed a large difference in DTOC days between UEC vanguards partner LAs compared with those that were not, with on average 23.7% lower DTOC per quarter (491 DTOC days per quarter). Fixed effect panel regressions found DTOC rates lower by 43.1% (99% CI 13.8% to 72.4%) in UEC partner LAs after the start of the vanguards programme. We found no indication of UEC partner LAs having lower DTOC rates prior to initiation of vanguards. CONCLUSIONS: The evidence indicates a sizeable statistically significant impact of UEC vanguards on DTOC; however, more research is required to explain the underlying reasons for this relationship.

People's preferences for self-management support.

OBJECTIVE: To identify and assess the preferences of people with long-term health conditions toward generalizable characteristics of self-management support interventions, with the objective to inform the design of more person-centered support services. DATA SOURCES: Primary qualitative and quantitative data collected on a representative sample of individuals with at least one of the fifteen most prevalent long-term conditions in the UK. STUDY DESIGN: Targeted literature review followed by a series of one-to-one qualitative semistructured interviews and a large-scale discrete choice experiment. DATA COLLECTION: Digital recording of one-to-one qualitative interviews, one-to-one cognitive interviews, and a series of online quantitative surveys, including two best-worst scaling and one discrete choice experiment, with individuals with long-term conditions. PRINCIPAL FINDINGS: On average, patients preferred a self-management support intervention that (a) discusses the options available to the patient and make her choose, (b) is individual-based, (c) face to face (d) with doctor or nurse, (e) at the GP practice, (f) sessions shorter than 1 hour, and (g) occurring annually for two-third of the sample and monthly for the rest. We found heterogeneity in preferences via three latent classes, with class sizes of 41% (C1), 30% (C2), and 29% (C3). The individuals' gender [P < 0.05(C1), P < 0.01(C3)], age [P < 0.05(C1), P < 0.05(C2)], type of long-term condition [P < 0.05(C1), P < 0.01(C3)], and presence of comorbidity [P < 0.01(C1), P < 0.01(C3), P < 0.01(C3)] were able to characterize differences between these latent classes and help understand the heterogeneity of preferences toward the above mentioned features of self-management support interventions. These findings were then used to profile individuals into different preference groups, for each of whom the most desirable form of self-management support, one that was more likely to be adopted by the recipient, could be designed. CONCLUSIONS: We identified several factors that could be used to inform a more nuanced self-management support service design and provision that take into account the recipient's characteristics and preferences.

The influence of home care supply on delayed discharges from hospital in England.

BACKGROUND: Delayed transfers of care (DTOC) of patients from hospital to alternative care settings are a longstanding problem in England and elsewhere, having negative implications for patient outcomes and costs to health and social care systems. In England, a large proportion of DTOC are attributed to a delay in receiving suitable home care. We estimated the relationship between home care supply and delayed discharges in England from 2011 to 2016. METHODS: Reduced form fixed effects OLS models of annual DTOC attributed to social care at local authority (LA)-level from 2011 to 2016 were estimated, using both number of days and patients as the dependent variable. A count of home care providers at LA-level was utilised as the measure of home care supply. Demand (e.g. population, health, income) and alternative supply (e.g. care home places, local unemployment) measures were included as controls. Instrumental Variable (IV) methods were used to control for any simultaneity in the relationship between DTOC and home care supply. Models for DTOC attributed to NHS and awaiting a home care package were used to assess the adequacy of the main model. RESULTS: We found that home care supply significantly reduced DTOC. Each extra provider per 10 sq. km. in the average local authority decreased DTOC by 14.9% (equivalent to 449 days per year), with a per provider estimate of 1.6% (48 days per year). We estimated cost savings to the public sector over the period of analysis from reduced DTOC due to increased home care provision between £73 m and £274 m (95% CI: £0.24 m to £545.3 m), with a per provider estimate of savings per year of £12,600 (95% CI: £900 to £24,500). CONCLUSION: DTOC are reduced in LAs with better supply of home care, and this reduces costs to the NHS. Further savings could be achieved through improved outcomes of people no longer delayed. Appropriate levels of social care supply are required to ensure efficiency in spending for the public sector overall.

Doing involvement: A qualitative study exploring the 'work' of involvement enacted by older people and their carers during transition from hospital to home.

CONTEXT: Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. DESIGN: We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. RESULTS: We propose that being involved in care is a dynamic form of labour, which we call 'involvement work' (IW). In hospital, many patients 'entrust' IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. DISCUSSION: Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post-discharge and negatively affecting peoples' sense and experience of (in)dependence. CONCLUSIONS: A balance needs to be struck between respecting peoples' desire/capacity for non-involvement in hospital while recognising that 'delegating' IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. PATIENT/PUBLIC CONTRIBUTION: Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient-facing documentation. Patients were key participants within the study; it is their experiences represented.

The experience of loneliness and living with sight loss in English care homes.

Loneliness is a serious societal concern, especially the loss of social connections in later life. Those with sight loss living in care homes are thought to face particular challenges in social engagement, but research is scarce. This study aimed to examine the experience of loneliness amongst residents with sight loss; the different dimensions of loneliness; and their attitudes about the role of care homes in addressing these needs. Through in-depth interviews with 18 residents, supplemented by interviews with family members and care home managers, the research identified that residents were generally satisfied with their social situation. However, there was evidence that sight loss was not appropriately accommodated within the care home. In their efforts to enable all residents to engage in social activities, attempts to include those with sight loss could feel contrived, and residents with sight loss did not feel meaningfully involved. Residents described barriers to forming close associations, including the challenges of background noise in communal spaces and a sense that conversation in the care home lacked stimulation. Residents felt that opportunities to forge and maintain bonds with people outside the care home were limited. The research concludes that care homes should avoid inclusion-for-inclusion's sake, and future research could study the effectiveness of interventions to improve care home links to the wider community.

Delayed transfers of care for older people: a wider perspective.

Delayed transfers of care (DTOC), often unhelpfully referred to as 'bed blocking', has become a byword for waste and inefficiency in healthcare systems throughout the world. An estimated 2.7 million bed days are occupied each year in England by older people no longer in need of acute treatment, estimated to cost £820 million (2014/15) in inpatient care. Policy and media attention have often been drawn to this narrative of financial waste, resulting in policy setting that directly targets the level of DTOC, but has done little to put patient health first. These figures and policies portray a misleading image of the delays as primarily of concern in terms of their financial burden on acute hospital care, with little consideration given to the quantification on patient health or wider societal impacts. In spite of the multi-factorial decision-making process that occurs for each patient discharge, current evaluation frameworks and national policy setting fail to reflect the complexity of the process. In this commentary, we interrogate the current approach to the quantification of the DTOC impact and explore how policies and evaluation methods can do more to reflect the true impact of the delays.

Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia.

OBJECTIVES: Life story work involves gathering information about a person, their history and interests, and producing a tangible output, usually a book. It is used increasingly in dementia care. However, theory about if, how, and why it affects outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. This article uses a systematic review to uncover theories of change and outcomes for life story work in dementia care. We describe the methods and their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of 'theory poor' interventions. METHODS: A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of life story work to inform a feasibility study for the formal evaluation of life story work in dementia care. For the theory element, a 'landscaping review' analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit causal links between life story work and outcomes. We triangulated the review findings with qualitative research, which used focus groups with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from life story work. RESULTS: Of the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia, individual psychological outcomes, improved relationships between care staff and the individual with dementia, better care, more effective engagement of family members/carers within the care setting, and helping carers to cope. Twelve final theories linking these outcomes to life story work via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia, and professionals. Together, the results informed our choice of outcome measures for the pilot evaluation. CONCLUSIONS: This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un-theorized areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

Umbrella review of family-focused care interventions supporting families where a family member has a long-term condition.

AIM: The aim of this study was to summarize reviews of family-focused care interventions that support families with a family member with a long-term condition across the life course. DESIGN: Umbrella review. DATA SOURCES: Medline (1946-2019), Cochrane Database of Systematic Reviews (2019), Database of Abstracts of Reviews of Effect and EMBASE (1947-2019), CINAHL (1981-2019), Health Technology Assessment Database (2019) and PsycInfo (1806-2019). REVIEW METHODS: All authors independently undertook title/abstract screening, data extraction and quality appraisal on a cluster of papers, working in groups of two or three to reach a consensus. The AMSTAR tool was used to appraise the quality of the studies and descriptive syntheses were undertaken. RESULTS: Fifteen reviews met the selection criteria. Overall family-focussed care and associated terms were poorly defined. Typically interventions were educational or psychological therapy/counselling with the goal of empowering individuals to manage their condition. There is some evidence that family-focused care interventions can improve clinical/biological health measures and self-care outcomes such as treatment adherence. Multicomponent psychosocial interventions that include cognitive-behavioural therapy, skills training, education and support and are focused on wider family members appear to improve family relationships and martial functioning. CONCLUSION: Long-term conditions have an impact on individual and family health and well-being, yet the impact of family-focused care interventions on family outcomes was overall inconclusive. A better understanding of how family-focused care interventions improve the health and well-being of individuals and their families is needed to promote the inclusion of family-focused care into practice. IMPACT: Supporting people with a long-term condition is a key health and social care priority. Family-focused care interventions have potential to improve the health and well-being of individuals and families, but there is a need to evaluate their clinical and cost-effectiveness. The findings from this review could be used by funding bodies when commissioning research for long-term conditions.

Exploring the relationship between nursing identity and advanced nursing practice: An ethnographic study.

AIMS AND OBJECTIVES: To consider the relationship between professional nursing identity and advanced practice by exploring intra-professional relationships between advanced nurse practitioners (ANPs) and nursing colleagues. BACKGROUND: Advanced nursing practice continues to develop internationally. Previous studies suggest advanced practice may lack support within nursing, which may lead to underutilisation, retention and patient safety issues. However, the relationship between the wider nursing profession and advanced practice is poorly understood and the theory that professional identity creates cultural barriers to advanced practice has received little empirical attention. DESIGN: Ethnographic methodology was used. METHODS: Fieldwork methods were participant observation and semi-structured interviews. Participants were ANPs (n = 9) and nursing colleagues (n = 5) across two primary care general practice organisations. Data were analysed thematically using framework analysis, underpinned a priori by professional identity theories. Reporting was guided by COREQ. RESULTS: Three themes were identified which indicated how intra-professional relationships were conducted: Conciliating Nursing, where ANPs took responsibility for developing positive relationships with other nurses; Vertical Discounting, where nursing colleagues were dismissive and undermined ANPs, who themselves behaved similarly towards other nurses; and Lateral Othering, where ANPs undermined other ANPs. Vertical Discounting and Lateral Othering destabilised advanced practice. CONCLUSION: Intra-professional relationships, and the broader nursing profession, shape advanced practice. We theorise this is underpinned by threats to professional identity, while weak professional identity amongst even established advanced practitioners exacerbates lack of support. Highlighting these issues allows space to develop alternative strategies to negotiate intra-professional relationships, informed by professional identity theories, which support rather than inhibit advanced practice. RELEVANCE TO CLINICAL PRACTICE: As advanced practice expands throughout primary and secondary care, and across allied health professions, the impact of professional identity and relationships on health care will likely increase and the importance of strong advanced practice identity will become increasingly relevant.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

How older people enact care involvement during transition from hospital to home: A systematic review and model.

BACKGROUND: Current models of patient-enacted involvement do not capture the nuanced dynamic and interactional nature of involvement in care. This is important for the development of flexible interventions that can support patients to 'reach-in' to complex health-care systems. OBJECTIVE: To develop a dynamic and interactional model of patient-enacted involvement in care. SEARCH STRATEGY: Electronic search strategy run in five databases and adapted to run in an Internet search engine supplemented with searching of reference lists and forward citations. INCLUSION CRITERIA: Qualitative empirical published reports of older people's experiences of care transitions from hospital to home. DATA EXTRACTION AND SYNTHESIS: Reported findings meeting our definition of involvement in care initially coded into an existing framework. Progression from deductive to inductive coding leads to the development of a new framework and thereafter a model representing changing states of involvement. MAIN RESULTS: Patients and caregivers occupy and move through multiple states of involvement in response to perceived interactions with health-care professionals as they attempt to resolve health- and well-being-related goals. 'Non-involvement', 'information-acting', 'challenging and chasing' and 'autonomous-acting' were the main states of involvement. Feeling uninvolved as a consequence of perceived exclusion leads patients to act autonomously, creating the potential to cause harm. DISCUSSION AND CONCLUSION: The model suggests that involvement is highly challenging for older people during care transitions. Going forward, interventions which seek to support patient involvement should attempt to address the dynamic states of involvement and their mediating factors.