Professor Claire Surr

Abstract

As the care home sector expands over time, the health and social care needs of both residents and staff intensify and diversify. These sector-wide changes call for significant growth in research capacity to deliver useful, pertinent and timely evidence.

In this paper we highlight growing pressures in the care home sector, and the major and enduring barriers to conducting research across that sector, within homes and amongst staff, drawing primarily on our experiences conducting public health research in England. These obstacles include a lack of national infrastructure, tradition and culture, and underdeveloped systems to reimburse providers for the staff and other costs associated with research delivery.

Finally, we detail short, medium and long-term actions that could enable the growth of research capacity across the sector. These include leveraging political will, remunerating and crediting research champions, and establishing a feedback loop to showcase the contribution of research in improving both quality of care and resident outcomes. Our suggested actions focus on what would be required to build research capacity in care homes in England; although these also have relevance in other countries where there is a need and wish to build research capacity in adult long-term care facilities.

Cancer is predominantly a disease of older adults. To date there has been little research on the experiences of older adults or their view on the diagnostic pathway. The aim was to gain an improved understanding of the views and experiences of older adults on all aspects of cancer investigation via a qualitative study using semi-structured interviews with patients aged 70 and over. Data were analysed using a thematic framework analysis. The themes identified in participant’s accounts included the patients’ process of decision making, the value of having a diagnosis, the patients’ experience of cancer investigations and the impact of the covid-19 pandemic on the diagnostic pathway. Older adults in this study (all White-British) indicated a clear preference for having clarity on the cause of symptoms and the diagnosis, even in the face of unpleasant investigations. Patients suggested they wanted to be involved in the decision process. In conclusion, older adults who present to primary care with symptoms suggestive of cancer may accept diagnostic testing solely for the benefit of knowing the diagnosis. There was a clear patient preference that referrals and investigations for cancer symptoms should not be deferred or delayed based on age or subjective assessments of frailty. Shared decision making and being involved in the decision making process is important to patients, regardless of age.

BACKGROUND: Older age and frailty increase the risk of morbidity and mortality from cancer surgery and intolerance of chemotherapy and radiotherapy. The effect of old age on diagnostic intervals is unknown; however, older adults need a balanced approach to the diagnosis and management of cancer symptoms, considering the benefits of early diagnosis, patient preferences, and the likely prognosis of a cancer. AIM: To examine the association between older age and diagnostic processes for cancer, and the specific factors that affect diagnosis. DESIGN AND SETTING: A systematic literature review. METHOD: Electronic databases were searched for studies of patients aged >65 years presenting with cancer symptoms to primary care considering diagnostic decisions. Studies were analysed using thematic synthesis and according to the Synthesis Without Meta-analysis guidelines. RESULTS: Data from 54 studies with 230 729 participants were included. The majority of studies suggested an association between increasing age and prolonged diagnostic interval or deferral of a decision to investigate cancer symptoms. Thematic synthesis highlighted three important factors that resulted in uncertainty in decisions involving older adults: presence of frailty, comorbidities, and cognitive impairment. Data suggested patients wished to be involved in decision making, but the presence of cognitive impairment and the need for additional time within a consultation were significant barriers. CONCLUSION: This systematic review has highlighted uncertainty in the management of older adults with cancer symptoms. Patients and their family wished to be involved in these decisions. Given the uncertainty regarding optimum management of this group of patients, a shared decision-making approach is important.

In a developing country such as South Africa, where needs surpass resources, elderly persons living in institutional care due to dementia are generally viewed as well-cared for if their basic needs for security, food and personal hygiene are met. Due to the disabling effect of the condition, residents are often unable to engage independently in occupations that they find meaningful, requiring staff support to enable them to do this. In South Africa staff training on dementia and person-centred care (PCC) is limited, which in turn impacts on how staff interact with residents. This often results in persons with dementia being deprived of opportunities for engagement and occupation that have the potential to bring about well-being. The first author conducted an initial pilot feasibility study to assess Dementia Care Mapping (DCM), a method used internationally to help improve the quality of formal dementia care, at three identified residential care facilities in South Africa. DCM is an observational tool that involves observing care from the perspective of the person with dementia. This paper examines whether DCM could be used as a means to develop quality dementia care in formalcare settings in South Africa despite a lack of human and financial resources.

Background Many residents in care homes for older adults live with dementia. Understanding the unique profiles of cognitive impairments for each resident is important for person-centred care, yet information about specific cognitive problems is limited, and knowledge varies. This study explored the feasibility of implementing the Cognitive Daisy (COG-D) intervention, which provide a visual summary in the shape of a 15-petal flower derived from the scores on a neuropsychological assessment battery, in care homes for older adults. Methods A parallel-group feasibility cluster randomised controlled trial (cRCT) was conducted over 24 months. Eight care homes were randomised in a 1:1 ratio to either usual care plus the Cognitive Daisy intervention (COG-D) or usual care (control). Care staff were trained on how to use Cognitive Daisies and/or on how to conduct the COG-D assessments with residents. Cognitive Daisies were displayed in residents’ rooms and included in care plans. COG-D assessments were repeated after 6 months. The primary objective was to explore areas of uncertainty for a future large-scale trial including recruitment rates and intervention implementation and adherence. Secondary objectives were to explore signals of effects in candidate outcome measures for residents and staff, obtained at baseline and 6- and 9-month post-randomisation. A process evaluation explored barriers and facilitators to intervention implementation through care-plan audits (to explore recommendations in response to COG-D assessments), interviews and focus groups with staff, residents and relatives. Results Resident recruitment (n = 115) and staff recruitment (n = 99) in 8 care homes exceeded targets (100 and 50, respectively, in 8–10 care homes). Staff training was perceived positively with high completion rates (77.1% and 83.3% for basic and advanced training, respectively). Completion rates were also high for COG-D assessments (75.5% for assessment 1, and 72.5% of these residents completed assessment 2), and COG-D scores remained stable across the two assessment points. No clear signals of effects were found for candidate outcome measures. Number of recommendations in care plans varied across care homes, and interviews/focus groups highlighted several barriers to staff’s use of the Cognitive Daisies in daily practice. Conclusion Findings indicate trial delivery was feasible. However, the COG-D requires modification if it is to be feasibly implemented in care home settings.

Background: Animal-assisted interventions and robotic animal interventions are becoming increasingly popular to support the care of people with dementia and may have the potential to improve a range of psychosocial outcomes. This review aims to identify, describe, and compare animal-assisted and robotic animal interventions delivered to people with dementia, their characteristics, effectiveness, and the proposed mechanisms underlying any potential impact. Methods: A systematic literature search was conducted in MEDLINE, AMED, EMBASE, PsycINFO, OVID Nursing, PubMed, CINAHL and Web of Science. Random-effects meta-analyses of randomised controlled trials (RCTs) were conducted to summarise studies that evaluated common outcomes (agitation, depression, quality of life). A narrative approach was used to synthesise other findings. Results: Fifty-one studies were included: 18 RCTs; 12 non-randomised trials, 13 cohort studies, seven qualitative studies and one mixed-methods study. Meta-analyses were conducted for a small number of RCTs, with effectiveness of animal-assisted interventions demonstrated for agitation. Narrative findings suggested animal-assisted and robotic animal interventions may be promising in improving depression, agitation, and quality of life. Three potential mechanisms of action were identified for both animal-assisted and robotic animal interventions, namely enhancing social connections, providing engaging and meaningful activities, and the affect-generating aspect of the human-animal bond. A fourth mechanism was identified for animal-assisted interventions only: promoting physical activity. Robotic animals appear to have a place in complex human-animal relationships, but a greater understanding of robotic animal interventions is required to harness the benefits that may be derived from their use. Conclusion: Delivering these interventions appear promising in improving psychosocial outcomes for people with dementia. As most included studies had methodological limitations, these findings are preliminary, but contribute to the body of evidence providing an understanding in terms of intervention characteristics and mechanisms of action. When developing intervention guidance, attention should be given to potential mechanisms and fundamental characteristics such as session content, delivery format and facilitator role.

Background The burden of cancer falls predominantly on older adults. Prompt presentation to primary care with cancer symptoms could result in an earlier diagnosis. However patient symptom appraisal and help seeking decisions involving cancer symptoms are complex and may be further complicated in older adults. Aim To explore the effect of older age on patients’ appraisal of symptoms that may indicate cancer and their decision to seek help for these symptoms. Design Mixed methods systematic review Method Medline, Embase, CINAHL, PsycInfo, Cochrane Library, Web of Science Core Collection, ASSIA, ISRCTN registry and NICE were searched for studies on the symptom appraisal and help seeking decisions relating to cancer symptoms by adults aged 65 and over. Studies were analysed using thematic synthesis and according to the Synthesis Without Meta-Analysis (SWiM) guidelines Results Eighty studies were included in the review with a total of 324,995 participants. The studies suggested a possible association between increasing age and a prolonged symptom appraisal interval. Factors such as reduced knowledge of cancer symptoms and differences in symptom interpretation may contribute to this prolonged interval. In contrast, we found a possible association between increasing age and prompt help-seeking. Themes affecting help seeking in older adults included the influence of family and carers, competing priorities, fear, embarrassment, fatalism, co-morbidities, a desire to avoid doctors, a perceived need to not waste doctor’s time and patient self-management of symptoms. Conclusions This review suggests that increasing age is associated with delayed cancer symptom appraisal. When symptoms are recognised as potentially serious, increasing age was associated with prompt help seeking although factors such as fear of wasting a doctor’s time could prolong this. As a result of this review, policy makers, charities and information from GPs should aim to ensure older adults are able to recognise potential symptoms of cancer and can seek help promptly.

The maintenance of self in dementia is associated with socio-biographical factors. The theoretical literature suggests that interpersonal relationships, the social context, and the generation of stories are important in maintenance of self. Empirical research on self in dementia supports this but has been predominantly conducted with participants living in the community. Living in residential care brings additional threats to self. This paper presents a study examining the relevance of a socio-biographical theory of self to people with dementia living in residential care. Between 3 and 8 tape-recorded and transcribed unstructured interviews were conducted with 14 people with dementia who were living in 4 residential homes throughout England and Wales, over a 6-24-month period. They were analysed using an interpretive biographical methodology. The results provide evidence to support the relevance of a socio-biographical theory of self to this group. Relationships with family, other residents and care home staff were important for maintenance of self. Social roles related to work, being part of a family, caring for others and being cared for, were particularly significant for self in this group. The creation of a life story, stories of selected life events, and the telling of stories with possible metaphorical interpretations were also important for the maintenance of self. The results also suggest that psychological and embodied factors may be relevant to the self in dementia. The study suggests that staff working in residential homes should consider these elements if they are to provide care that supports maintenance of self for people with dementia. Implications for future research are discussed. © 2005 Elsevier Ltd. All rights reserved.

The DCM™ EPIC trial requires participating care homes to identify two staff members willing to be trained in the DCM™ intervention and thereafter implement three DCM ‘mapping cycles’ during the trial. These staff are known as ‘mappers’. This is no small undertaking, and early pilot work highlighted the need to include additional measures to enhance adherence to some elements of intervention uptake and delivery. Various strategies were thus implemented which comprise: a) provision of enhanced information to prospective staff mappers, b) requirement for staff to detail their understanding of DCM™, c) DCM™ expert contact with mappers ahead of randomisation to ensure eligibility and suitability, d) an expert-supported first cycle of mapping, e) review of mapper and expert feedback after the first cycle to ensure areas of concern can be addressed prior to the next cycle, f) CTU contact with mappers to flag the timing of the next mapping cycle, and address any concerns. To achieve the above, trials unit staff act as a central point of contact, reviewing mapper consent and materials, monitoring each stage of the process and contacting DCM™ experts and the Chief Investigator to flag issues and problems in a timely manner. Although enhancing intervention compliance in this way can be seen to be altering the implementation of the intervention and thus reducing its generalizability, it will be discussed that intervention optimisation is necessary to minimise the likelihood of negative results attributable to poor implementation rather than intervention ineffectiveness.

Written by a team of educators and clinicians with considerable expertise in their respective fields, the book focuses on the application of psychology in key areas of nursing (child, adult, older people, learning disabilities, mental ...

On 11th November 2015 Claire Surr hosted her professorial inaugural lecture as Professor of Dementia Studies at Leeds Beckett University, where she highlighted the changing profile and perception of dementia in recent years. Speaking ahead of the lecture, Professor Surr explained: “In recent years dementia has moved from a condition that was spoken about relatively little beyond the health and care services field, to its position as a household name, with barely a day going by when a dementia story does not occupy a space in national newspapers and on TV and radio. Dementia is also firmly on the international political agenda and so has truly ‘come of age’ within society today. “In my lecture I will look at dementia as a research and societal issue over the last 20 years and will explore some of the drivers that have led to dementia’s coming of age. There will also be an opportunity to reflect on and contribute to discussion about the future of dementia research and the position of people with dementia and their families within our society.”

This article is a contemporary issues piece which discusses the challenges in providing dementia education in Higher Education Institutions.

Background There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. Methods and findings We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer’s disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer’s society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer’s Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. Limitations Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. Interpretation This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value. Trial registration PROSPERO no. CRD42015027346.

Dementia Care Mapping (DCM) is an observational tool and process that is widely used in dementia care in measuring and improving person-centred care (PCC). DCM was previously piloted on a neurorehabilitation ward, where it was found to be feasible and acceptable in this setting. Following this, a new modified tool and accompanying manual were developed: Care Mapping - Neurorehabilitation (DCM-NR). The current study aimed to assess the feasibility and validity of DCM-NR by piloting its use in a range of clinical neuroscience settings. A mixed-methods design was used employing both quantitative and qualitative techniques. The new DCM-NR was found to be feasible for use both in terms of the suitability of its coding system and the implementation process. DCM-NR was shown to have a moderate level of concurrent validity with participants' self-report of PCC. Participants' subjective reports on their experiences of care provided validation for the areas of psychological need observed in DCM-NR. The results of this study indicate that DCM-NR is feasible and valid for use in a range of clinical neuroscience settings. Further longitudinal research is required to evaluate the impact of DCM-NR on PCC practices over time.

Person-centred care can improve the well-being of patients and is therefore a key driver in healthcare developments in the UK. The current study aims to investigate the complex relationship between cognitive impairment, dependency and well-being in people with a wide range of acquired brain and spinal injuries. Sixty-five participants, with varied acquired brain and spinal injuries, were selected by convenience sampling from six inpatient clinical neuroscience settings. Participants were observed using Dementia Care Mapping - Neurorehabilitation (DCM-NR) and categorised based on severity of cognitive impairment. A significant difference in the behaviours participants engaged in, their well-being and dependency was found between the severe cognitive impairment group and the mild, moderate or no cognitive impairment groups. Dependency and cognitive impairment accounted for 23.9% of the variance in well-ill-being scores and 17.2% of the variance in potential for positive engagement. The current study highlights the impact of severe cognitive impairment and dependency on the behaviours patients engaged in and their well-being. It also affirms the utility of DCM-NR in providing insights into patient experience. Consideration is given to developing DCM-NR as a process that may improve person-centred care in neuroscience settings.

Background: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool's acceptability in this setting. Purpose: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. Method: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. Results: Factor analysis was performed separately for staff and patient Q-sorts. Each found a "consensus" factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. Conclusions: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings.Implications for RehabilitationPerson-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation.Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward.Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting. © 2013 Informa UK Ltd.

Person-centred care (PCC) is recommended when working with patients with neurological difficulties. Despite this, to date there has been no appropriate methodology for assessing or developing PCC in neurorehabilitation settings. Dementia Care Mapping (DCM) is a well-established tool for assessing and developing PCC in dementia settings and the current study investigated the feasibility of applying DCM on an acute neurorehabilitation ward. DCM procedure and coding required minor adaptations for use in this setting and further recommended adaptations were subsequently identified. It was found that the DCM coding system was generally suitable and could identify strengths, weaknesses and areas for development in ward care. Q-methodology identified that staff views endorsed the feasibility of using DCM in neurorehabilitation, with staff reporting that they found DCM useful and relevant to their work. DCM could be further developed for this setting by amendments to the behaviour coding system, concept and coding of person-centred care, and a population-specific manual. DCM is a promising methodology to develop and promote PCC in neurorehabilitation. © 2012 Copyright Psychology Press.

Objectives: Survey results from 161 respondents trained in dementia care mapping (DCM) in the United States and United Kingdom (82 and 79 respondents, respectively) addressed the following: (a) To what extent are mappers using DCM? (b) How satisfied are mappers with DCM? (c) What affect does DCM have on mappers’ attitudes toward their dementia practice? and (d) What challenges are encountered by mappers in the use of DCM? Method: Analyses using odds ratios were used to make international and training-level (basic vs. advanced) comparisons. Results: Differences across countries were found in use of DCM and lack of satisfaction using DCM codes. Similarities were found with positive affects of DCM on attitudes and lack of time for DCM. Discussion: Differences in mappers’ experiences and perceptions exist across the two countries, warranting increased attention to the cultural contexts within which mappers are situated and how these affect the implementation of DCM within a country.

There is now widespread concern about the inadequate care and support provided to people with dementia from diagnosis to death. It is acknowledged that while there is a range of effective ways to care for and support people with dementia and their families from diagnosis to death, these have yet to become integral to practice. In England, for example, the National Dementia Strategy seeks to transform the quality of dementia care. One of the key components to transforming the quality of care is to ensure we have an informed and effective workforce. We argue here that in order to transform the quality of care we need to distinguish between the aims of training and education. Whilst there is a place for skills-based workplace training, Higher Education in dementia studies has a key role to play in the provision of specialist knowledge and skills in dementia care emphasizing as it does the development of critical thinking, reflection and action. In this paper we describe dementia studies at Bradford University available at both undergraduate and postgraduate levels. We outline their aims and learning outcomes, curricula, approach to teaching, learning and assessment. We describe the nature of students who study with us, noting their fit with the Higher Education Funding Council in England's agenda for widening participation in higher education. Higher Education in dementia studies has a unique role to play in equipping practitioners and professionals with the information, skills and attitudes to realize the potential for quality of life for people with dementia and their families. © 2009 Copyright International Psychogeriatric Association.

Purpose: The subjective psychological experience of people with moderate to severe dementia living in residential care is insufficiently understood. In the present study we aimed to explore the subjective experience of life with dementia in residential care from the perspective of the person with dementia, and to understand the psychological impact of being in this situation. Design and Methods: This was an exploratory qualitative study. Eighty individuals with dementia who were living in residential care homes engaged in unstructured conversations with a researcher. We subjected the transcripts of the resultant 304 conversations to interpretative phenomenological analysis in order to develop a thematic account. Results: The experience of living with dementia in residential care was fundamentally one of experiencing difficult and distressing emotions relating to loss, isolation, uncertainty, fear, and a sense of worthlessness. Participants generally tried to cope by accepting and making the best of things and affirming their past sense of self and identity, but some also expressed frustration and anger. Implications: Participants were able to describe aspects of their situation and their emotional response to it, grounded in a strong retained sense of self and identity. The participants' experience emphasizes the importance of improving the living situation of elders with dementia in residential care settings. Copyright 2008 by The Gerontological Society of America.

While awareness among people with mild to moderate dementia residing in the community has been extensively studied, little evidence has been presented regarding the extent to which people with moderate to severe dementia living in residential care show awareness of their own situation and functioning. The present study aimed to explore how differing degrees of awareness are manifested in the conversations and interactions of people with dementia living in residential care settings, and to identify theoretical and practical implications. Transcripts of 304 conversations with 80 individuals with dementia living in residential care homes in England and Wales were analysed using a grounded theory approach. All 80 participants demonstrated a degree of retained awareness, and there was considerable evidence of retained awareness throughout the conversations, expressed in relation to the three domains of self, relationship, and the environmental context. Two-thirds of participants also demonstrated at least one instance of unawareness, although demonstrations of retained awareness outweighed indications of unawareness. Unawareness was evident in relation to appraisal of functioning and the meaning ascribed to the situation. A grounded theory model of awareness in people with moderate to severe dementia who still communicate verbally proposes that demonstration of awareness involves a set of analytic and behavioural processes, a scope or timescale, and a focus. Awareness is demonstrated in relation to a given focus and scope through the involvement of cognitive processes of varying degrees of complexity, ranging from registering through appraising and interpreting to reflection. Unawareness may be demonstrated in relation to some elements of process, focus or scope, while other aspects remain unaffected. Understanding more about the capacity for retained awareness and the specific ways in which awareness can be compromised may assist care staff in responding effectively to residents' needs. © 2008 Elsevier Ltd. All rights reserved.

Abstract

Over the years there have been advances in the quality of care provision for people with dementia. How to measure the impact of care on the person with dementia has challenged researchers as, until recently, no evaluation tool offered a comprehensive overview of the behaviour patterns and well-being of persons with dementia. Dementia Care Mapping (DCM) is a tool used by care practitioners and researchers to capture both the process (behaviours) and outcome (well-being) of care and is therefore of use as a tool to evaluate quality of care. This study aims to assess, through DCM, the experience of dementia care provision in residential and nursing homes in two voluntary organizations in England. The data illustrates similarities in the well-being and behaviour patterns of 76 persons with dementia living in six care settings throughout England. Examples of instances when people with dementia were "put down" and when well-being was enhanced, are outlined. The homes in the study were meeting the physical care but not the broader psychosocial care needs of the observed residents. The action taken by the organizations as a result of the DCM evaluations is summarized.

In health care systems the contribution of Information Technology (IT) has proven to have a dynamic role in supporting the quality of care provided to the general population. Dementia Care Mapping (DCM), an observational tool to assess the quality of care for people with dementia, still depends on spreadsheet based tools for data storage and analysis. This system does not comply with the emerging needs of DCM data to store, share, track, and compare overtime in order to monitor progress and trends in care quality. In this paper we provide an overview of the DCM system, identify the need for data management and we propose a DCM data management framework based on a data warehousing approach to facilitate the data collection, storage, sharing and analysis in an organised and consistent manner. We show the sequence of steps (designing relational and dimensional databases) required to transform DCM data into required information. © 2010 Springer-Verlag.

To assess the effects of elder-clowning on moderate to severe behavioral and psychological symptoms of dementia (BPSD) in nursing home residents with dementia, primarily of the Alzheimer's type.Before-and-after study.Nursing home.Nursing home residents with moderate to severe BPSD, as defined according to a Neuropsychiatric Inventory-Nursing Home version (NPI-NH) score of 10 or greater (N = 23), and their care aides.A pair of elder-clowns visited all residents twice weekly (~10 minutes per visit) for 12 weeks. They used improvisation, humor, empathy, and expressive modalities such as song, musical instruments, and dance to individualize resident engagement.Primary outcomes were BPSD measured using the the NPI-NH, quality of life measured using Dementia Care Mapping (DCM), and nursing burden of care measured using the Modified Nursing Care Assessment Scale (M-NCAS). Secondary outcomes were occupational disruptiveness measured using the NPI-NH, agitation measured using the Cohen Mansfield Agitation Inventory (CMAI), and psychiatric medication use.Over 12 weeks, NPI-NH scores declined significantly (t22  = -2.68, P = .01), and DCM quality-of-life scores improved significantly (F1,50  = 23.09, P < .001). CMAI agitation scores decreased nominally, but the difference was not statistically significant (t22  = -1.86, P = .07). Occupational disruptiveness score significantly improved (t22  = -2.58, P = .02), but there was no appreciable change in M-NCAS scores of staff burden of care.Results suggest that elder-clowning reduced moderate to severe BPSD of nursing home residents with dementia, primarily of the Alzheimer's type. Elder-clowning is a promising intervention that may improve Alzheimer's disease care for nursing home residents.

Dementia Care Mapping (DCM) is a person-centred care quality monitoring and improvement tool used for nearly 20 years in formal dementia care settings and there are thousands of people trained in its use internationally. However, little is known about if and how DCM is used in practice or regarding application of inter-rater reliability checks to ensure data quality. This study aimed to explore the application of DCM in practice in the UK. A mixed methods design including an on-line survey and in-depth, semi-structured interviews was employed. There were 98 survey respondents, representing 71 health and social care, University/research and training/consultancy organisations. Twenty-one people participated in the semi-structured interviews. Fifty-nine percent of survey respondents had used DCM since completing training. Those working in clinical roles and in health and social care provider organisations were least likely to have used DCM. A range of barriers and supports to use of DCM in practice after training were reported, including lack of management support and time. The majority of those who had used DCM also conducted inter-rater reliability checks at least once per year or more frequently. Of the 20% who did not the main barriers to this were absence of someone to conduct the checks with and lack of time and resources. The study has shown that it is possible to apply an evidence-based quality monitoring and improvement tool such as DCM to support implementation of person-centred care in practice, despite widespread limitations on time and resources as well as identifying a range of setting conditions that can help or hinder implementation.

BACKGROUND: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. OBJECTIVES: To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). DATA SOURCES: We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016; and (3) hand-searches of reference lists of relevant systematic reviews from database searches. REVIEW METHODS: The project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We divided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. RESULTS: We included 149 papers from the 22,918 papers screened, referring to 125 individual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer's Disease Assessment Scale - Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. LIMITATIONS: Most of the trials included participants with Alzheimer's disease, so recommendations may not apply to other types of dementia. We did not conduct economic analyses. The PPI consultation was limited to members of the Alzheimer's Society Research Network. CONCLUSIONS: Cognitive outcomes and biological markers form the core outcome set for future disease modification trials, measured by the MMSE or ADAS-Cog, and structural MRI in a subset of participants. FUTURE WORK: We envisage that the core set may be superseded in the future, particularly for other types of dementia. There is a need to develop an algorithm to compare scores on the MMSE and ADAS-Cog. STUDY REGISTRATION: The project was registered with Core Outcome Measures in Effectiveness Trials [ www.comet-initiative.org/studies/details/819?result=true (accessed 7 April 2016)]. The systematic review protocol is registered as PROSPERO CRD42015027346. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

The reuse of existing datasets to identify mechanisms for improving healthcare quality has been widely encouraged. There has been limited application within dementia care. Dementia Care Mapping is an observational tool in widespread use, predominantly to assess and improve quality of care in single organisations. Dementia Care Mapping data have the potential to be used for secondary purposes to improve quality of care. However, its suitability for such use requires careful evaluation. This study conducted in-depth interviews with 29 Dementia Care Mapping users to identify issues, concerns and challenges regarding the secondary use of Dementia Care Mapping data. Data were analysed using modified Grounded Theory. Major themes identified included the need to collect complimentary contextual data in addition to Dementia Care Mapping data, to reassure users regarding ethical issues associated with storage and reuse of care related data and the need to assess and specify data quality for any data that might be available for secondary analysis.

Objectives Globally, increasing numbers of people are living with multiple long-term conditions. When dementia is a co-occurring condition, contact with services is complicated due to the person’s cognitive difficulties and is often achieved as a dyad (person and carer). This realist review aimed to explain how dyads living with dementia alongside other long-term conditions are enabled (or not) to access and navigate health and care systems. Method An iterative, three stage approach synthesised evidence from empirical studies and stakeholders with lived and professional experience (ethics reference 23/LO/0829). Results Evidence from 61 studies and stakeholders (30 participants, 68 consulted) built and refined five programme theories for how health and care systems can achieve continuity of support, anticipate adverse events and maintain quality of life. Belief that concerns would be listened to and acted upon led dyads to seek assistance. Time and permission to discuss priorities, prognosis and acceptable levels of burden enabled uncertainties to be managed as a shared endeavour. The collective capacity of the dyad was enhanced by peer support, expertise they accrued over time and professionals who helped anticipate points of change. Conclusion Despite years of system changes, structural factors still create excessive burdens for dyads accessing services and constrain professionals’ ability to respond to complex needs.

Background: Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time. An ‘open-cohort’ design allows individual follow-up with recruitment before and after cluster-randomisation, but little literature exists on acceptability to inform their use in CRTs. Aim: To document the views and experiences of expert trialists to identify: a) Design and conduct challenges with established parallel-group CRT designs, b) Perceptions of potential benefits and barriers to implementation of open-cohort CRTs, c) Methods for minimising, and investigating the impact of, bias in open-cohort CRTs. Methods: Qualitative consultation via two expert workshops including triallists (n = 24) who had worked on CRTs over a range of settings. Workshop transcripts were analysed using Descriptive Thematic Analysis utilising inductive and deductive coding. Results: Two central organising concepts were developed. Design and conduct challenges with established CRT designs confirmed that current CRT designs are unable to deal with many of the complex research and intervention circumstances found in some trial settings (e.g. care homes). Perceptions of potential benefits and barriers of open cohort designs included themes on: approaches to recruitment; data collection; analysis; minimising/investigating the impact of bias; and how open-cohort designs might address or present CRT design challenges. Open-cohort designs were felt to provide a solution for some of the challenges current CRT designs present in some settings. Conclusions: Open-cohort CRT designs hold promise for addressing the challenges associated with standard CRT designs. Research is needed to provide clarity around definition and guidance on application.

Introduction Randomised controlled trials (RCTs) conducted in care home settings address a range of health conditions impacting older people, but often include a common core of data about residents and the care home environment. These data can be used to inform service provision, but accessing these data can be challenging. Methods The Virtual International Care Home Trials Archive (VICHTA) collates care home RCTs conducted since 2010, with >100 participants, across multiple conditions, with documented eligibility criteria, initially identified from a scoping review. A Steering Committee comprising contributing trialists oversees proposed uses of fully anonymised data. We characterised available demography and outcomes to inform potential analyses. Data are accessible via application to the Virtual Trials Archives, through a secure online analysis platform. Trial recruitment is ongoing and future expansion will include international studies. Results The first phase of VICHTA includes data from six UK RCTs, with individual participant data (IPD) on 5,674 residents across 308 care homes. IPD include age, sex, dementia status, length of stay, quality of life, clinical outcome measures, medications, resource use, and care home characteristics, such as funding, case mix, and occupancy. Follow-up ranges between four and sixteen months. Conclusions VICHTA collates and makes accessible data on a complex and under-represented research population for novel analyses, and to inform design of future studies. Planned expansion to international care home RCTs will facilitate a wider range of research questions. Interested collaborators can submit trial data or request data at www.virtualtrialsarchives.org.

Background Observational tools can support understanding of the complex needs of older people with dementia and aid delivery of person-centred care. However, existing tools are complex and resource intensive to use. Aim To develop and evaluate the acceptability and feasibility of a low-resource, observational tool to support staff reflection and practice development. Method Intervention development of the Person-Centred Observation and Reflection Tool (PORT) and acceptability and feasibility study, using surveys and focus groups in the UK, Norway and Spain. Findings PORT was reported as easy, accessible and acceptable to use. Observation was identified as powerful for individual staff development and provided an evidence-based source for underpinning individualised care planning. Potential time challenges associated with implementation were identified. Conclusion Initial evaluation indicates PORT is an acceptable and feasible tool for use in health and social care settings for older people. Further research is needed on implementation models and impacts of use.

BACKGROUND: Cognitive problems associated with dementia affect a large proportion of older adults living in residential care. Knowledge of cognitive impairments is important for providing person-centred care (PCC). The impact of specific cognitive impairments on residents' needs is often overlooked in dementia training and information about residents' individual cognitive profiles are frequently underspecified in care-plans, potentially undermining the delivery of PCC. This can lead to reduced resident quality of life and increased distressed behaviours-a major cause of staff stress and burnout. The COG-D package was developed to fill this gap. Daisies provide a visual representation of a resident's individual cognitive strengths and weaknesses in a colourful flower (Daisy) representing five cognitive domains. By viewing a resident's Daisy, care-staff can flexibly adjust in-the-moment care-decisions and can consult Daisies in care-plans for longer-term planning. The primary aim of this study is to assess the feasibility of implementing the COG-D package in residential care homes for older adults. METHODS/DESIGN: This 24-month feasibility cluster randomized controlled trial involves a 6-month intervention of the use of Cognitive Daisies in 8-10 residential care homes for older adults after training of care staff on the use of Cognitive Daisies in daily care (basic training) and on conducting the COG-D assessments with residents (advanced training). The key feasibility outcomes include % residents recruited, % COG-D assessments completed, and % staff completing the training. Candidate outcome measures for residents and staff will be obtained at baseline, and at 6 and 9 months post-randomization. COG-D assessments of residents will be repeated 6 months after the first assessment. A process evaluation will assess intervention implementation and barriers and facilitators to this through care-plan audits, interviews and focus groups with staff, residents, and relatives. Feasibility outcomes will be analysed against progression criteria to a full trial. DISCUSSION: The results of this study will provide important information about the feasibility of using COG-D in care homes and will inform the design of a future large-scale cluster RCT to assess the effectiveness and cost-effectiveness of the COG-D intervention in care homes. TRIAL REGISTRATION: This trial was registered on 28/09/2022 (ISRCTN15208844) and is currently open to recruitment.

© International Psychogeriatric Association 2019. The above article (Griffiths et al.2019) published with an incorrect abstract.The correct abstract is as follows:Objectives:Behaviours associated with agitation are common in people living with dementia. The Cohen-Mansfield Agitation Inventory (CMAI) is a 29-item scale widely used to assess agitation completed by a proxy (family carer or staff member). However, proxy informants introduce possible reporting bias when blinding to the treatment arm is not possible, and potential accuracy issues due to irregular contact between the proxy and the person with dementia over the reporting period. An observational measure completed by a blinded researcher may address these issues, but no agitation measures with comparable items exist.Design:Development and validation of an observational version of the CMAI (CMAI-O), to assess its validity as an alternative or complementary measure of agitation.Setting:Fifty care homes in England.Participants:Residents (N = 726) with dementia.Measurements:Two observational measures (CMAI-O and PAS) were completed by an independent researcher. Measures of agitation, functional status, and neuropsychiatric symptoms were completed with staff proxies.Results:The CMAI-O showed adequate internal consistency (α =.61), criterion validity with the PAS (r =.79, p = <.001), incremental validity in predicting quality of life beyond the Functional Assessment Staging of Alzheimer's disease (β = 1.83, p <.001 at baseline) and discriminant validity from the Neuropsychiatric Inventory Apathy subscale (r =.004, p =.902).Conclusions:The CMAI-O is a promising research tool for independently measuring agitation in people with dementia in care homes. Its use alongside the CMAI could provide a more robust understanding of agitation amongst residents with dementia. The original article has been corrected online to rectify this error.

Introduction: The prisoner population is ageing and consideration is needed for how to best support those with age-related health conditions in the system. Existing work practices and organisational structures often fail to meet the needs of prisoners with dementia, and prison staff experience high levels of burden due to these prisoners’ increased needs. Little is known about the best method of responding to the needs of this growing sub-population of prisoners. Method: A scoping review was conducted to answer the question: What are the perceived best care options for prisoners with dementia? To be included, publications had to be publicly available, reported on research findings, or viewed opinions and commentaries on care practices relevant to older prisoners with dementia. Searches were conducted in eleven databases to identify relevant publications. Data from the included publications were extracted and summarised into themes. Results: Eight themes were identified that could support better care practices for prisoners with dementia: (1) early and ongoing screening for older prisoners; (2) specialised services; (3) specialised units; (4) programs/activities; (5) adaptations to current contexts; (6) early release or parole for older prisoners with dementia deemed at low risk of re-offending; and (7) training younger prisoners (8) as well as staff to assist older prisoners with dementia. Besides practical strategies improving care practice, costs, prison-specific resources and staff skills were highlighted as care barriers across all themes. A lack of empirical evidence supported these findings. Conclusion: One of the implications of the international ageing prison population is higher numbers of people incarcerated with dementia. Suggestions for best care approaches for prisoners with dementia now need to move from opinion to empirical approaches to guide practice.

Dementia is a global challenge and educating and upskilling the workforce is a policy imperative. A World Health Organisation priority area is the development of dementia knowledge and skills amongst health and social care professionals. The European Parliament has called for European countries to develop action plans and create common guidelines to provide education and training to professionals caring for people with dementia and their family caregivers. The inconsistencies and gaps in dementia education have been repeatedly highlighted internationally as well as in the United Kingdom (UK); this is despite the four home nations having voluntary frameworks and guidelines for dementia education. This perspectives article on dementia education is written by representatives of the Higher Education Dementia Network (HEDN), a well-established group of academics involved in dementia education and research in over 65 Higher Education Institutions across the UK. HEDN works collaboratively with Dementia UK to promote consistent, high quality dementia education and share best practice. At HEDN we believe that reference to the knowledge and skills frameworks of the four nations within Professional Regulatory Body (PRB) requirements would ensure a more rigorous and consistent approach to dementia education across the UK. Reference to the Frameworks would support their adoption as a required and monitored sector minimum standard across professional boundaries. HEDN therefore recommends that application of the knowledge and skills within these frameworks becomes a requirement for (re)validation/approval of relevant health, social and housing professional programmes. In this article we explain the rationale behind the recommendations made by HEDN and the implications for PRBs and Higher Education Institutions.

Copyright © 2019, IGI Global. Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited. There is growing emphasis on sharing and reusing dementia care-related datasets to improve the quality of dementia care. Consequently, there is a need to develop data management solutions for collecting, integrating and storing these data in formats that enhance opportunities for reuse. Dementia Care Mapping (DCM) is an observational tool that is in widespread use internationally. It produces rich, evidence-based data on dementia care quality. Currently, that data is primarily used locally, within dementia care services, to assess and improve quality of care. Information-rich DCM data provides opportunities for secondary use including research into improving the quality of dementia care. But an effective data management solution is required to facilitate this. A rationale for the warehousing of DCM data as a technical data management solution is suggested. The authors also propose a data model for a DCM data warehouse and present user-identified challenges for reusing DCM data within a warehouse.

Background

Improving the care of people with dementia on acute hospital wards is a policy priority. Person-centred care is a marker of care quality; delivering such care is a goal of service improvement.

Background Urinary incontinence is prevalent in nursing and residential care homes, and has a profound impact on residents’ dignity and quality of life. Treatment options are limited in these care contexts and care homes predominantly use absorbent pads to contain incontinence, rather than actively treat it. Transcutaneous posterior tibial nerve stimulation is a non-invasive, safe, low-cost intervention that is effective in reducing urinary incontinence in adults. Objective To determine the clinical effectiveness of transcutaneous posterior tibial nerve stimulation to treat urinary incontinence in care home residents and to determine the associated costs of the treatment. Design A multicentre, pragmatic, participant and outcome assessor-blind, randomised placebo-controlled trial. Setting A total of 37 UK residential and nursing care homes. Participants Care home residents with at least weekly urinary incontinence that is contained using absorbent pads and who are able to use a toilet/toilet aid with or without assistance. Interventions Residents were randomised (1 : 1) to receive 12 30-minute sessions of transcutaneous posterior tibial nerve stimulation or sham stimulation over a 6-week period. Main outcome measures Primary outcome – change in volume of urine leaked over a 24-hour period at 6 weeks. Secondary outcomes – number of pads used, Perception of Bladder Condition, toileting skills, quality of life and resource use. Results A total of 408 residents were randomised (transcutaneous posterior tibial nerve stimulation, n = 197; sham stimulation, n = 209); two exclusions occurred post randomisation. Primary outcome data were available for 345 (85%) residents (transcutaneous posterior tibial nerve stimulation, n = 167; sham stimulation, n = 178). Adherence to the intervention protocol was as follows: 78% of the transcutaneous posterior tibial nerve stimulation group and 71% of the sham group received the correct stimulation. Primary intention-to-treat adjusted analysis indicated a mean change of –5 ml (standard deviation 362 ml) urine leakage from baseline in the transcutaneous posterior tibial nerve stimulation group and –66 ml (standard deviation 394 ml) urine leakage in the sham group, which was a statistically significant, but not clinically important, between-group difference of 68-ml urine leakage (95% confidence interval 0 to 136 ml; p = 0.05) in favour of the sham group. Sensitivity analysis supported the primary analysis. No meaningful differences were detected in any of the secondary outcomes. No serious adverse events related to transcutaneous posterior tibial nerve stimulation were reported. Economic evaluation assessed the resources used. The training and support costs for the staff to deliver the intervention were estimated at £121.03 per staff member. Estimated costs for delivery of transcutaneous posterior tibial nerve stimulation during the trial were £81.20 per participant. No significant difference was found between participants’ scores over time, or between transcutaneous posterior tibial nerve stimulation and sham groups at any time point, for resident or proxy quality-of-life measures. Conclusions The ELECTRIC (ELECtric Tibial nerve stimulation to Reduce Incontinence in Care homes) trial showed, in the care home context (with a high proportion of residents with poor cognitive capacity and limited independent mobility), that transcutaneous posterior tibial nerve stimulation was not effective in reducing urinary incontinence. No economic case for transcutaneous posterior tibial nerve stimulation was made by the cost–consequences analysis; however, the positive reception of learning about urinary incontinence for care home staff supports a case for routine education in this care context. Limitations Completing 24-hour pad collections was challenging for care home staff, resulting in some missing primary outcome data. Future work Research should investigate transcutaneous posterior tibial nerve stimulation in residents with urgency urinary incontinence to determine whether or not targeted stimulation is effective. Research should evaluate the effects of continence training for staff on continence care in care homes. Trial registration Current Controlled Trials ISRCTN98415244 and ClinicalTrials.gov NCT03248362. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 41. See the NIHR Journals Library website for further project information.

Background Urinary incontinence (UI) is highly prevalent in nursing and residential care homes (CH) and profoundly impacts on residents’ dignity and quality of life. Care homes predominantly use absorbent pads to contain UI rather than actively treat the condition. Transcutaneous posterior tibial nerve stimulation (TPTNS) is a non-invasive, safe, low-cost intervention with demonstrated effectiveness for reducing UI in adults. However, the effectiveness of TPTNS to treat UI in older adults living in care homes is not known. The ELECTRIC Trial aims to establish if a programme of TPTNS is a clinically effective treatment for UI in care home residents and investigate the associated costs and consequences. Methods This is a pragmatic, multicentre, placebo controlled randomised parallel group trial comparing effectiveness of TPTNS (target n=250) with sham stimulation (target n=250) in reducing volume of UI in CH residents. CH residents (men and women) with self- or staff- reported UI of more than once per week are eligible to take part, including those with cognitive impairment. Outcomes will be measured at 6, 12 and 18 weeks post randomisation using the following measures: 24-hour pad weight tests (PWT), post void residual urine (bladder scans), Patient Perception of Bladder Condition (PPBC), Minnesota Toileting Skills Questionnaire (MTSQ) and Dementia Quality of Life (DEMQOL). Economic evaluation based on a bespoke Resource Use Questionnaire will assess the costs of providing a programme of TPTNS. A concurrent process evaluation will investigate fidelity to the intervention and influencing factors and qualitative interviews will explore the experiences of TPTNS from the perspective of CH residents, family members, CH staff and managers. Discussion TPTNS is a non-invasive intervention that has demonstrated effectiveness in reducing UI in adults. The ELECTRIC Trial will involve CH staff delivering TPTNS to residents and establish whether TPTNS is more effective than sham stimulation for reducing the volume of UI in CH residents. Should TPTNS be shown to be an effective and acceptable treatment for UI in older adults in CHs, it will provide a safe, low-cost and dignified alternative to the current standard approach of containment and medication. Trial registration Clinical Trials.gov. NCT03248362. Registered on 14/08/2017. https://clinicaltrials.gov/ ISRCTN, ISRCTN 98415244. Registered on 25/04/2018. https://www.isrctn.com/

Purpose People with dementia occupy c.25% of acute hospital beds. Being in hospital can lead to distress in people with dementia, exacerbated by the difficult acute hospital environment and lack of staff preparedness to meet their often-complex needs. Acute hospital staff identify supporting distressed patients with dementia as a practice challenge. Communication skills training can improve interaction quality and staff confidence, however little communication research to date has been conducted in acute hospitals. This study aimed to implement a communication skills training programme for preventing and responding to distress in patients with dementia in acute hospitals, and to assess its impact. Methods A longitudinal, mixed-methods, multiple case study design was employed in six wards across three English acute hospitals. The Kirkpatrick training evaluation framework (reaction to training, impact on knowledge and confidence, behaviours and outcomes for patients and staff) underpinned the study, with qualitative observational and interview, and quantitative survey and outcomes data collected immediately pre, post and 1-3 months post training. The [redacted] communication skills training programme included three communication trainables identified in an earlier conversation analysis study phase. It was delivered over two half-days, by local clinical educators, upskilled via a train-the-trainer programme. Findings A total of 145 staff attended at least one half-day of training. Delivery was feasible, however practical challenges with training organisation and freeing up staff to attend occurred. Staff who found it engaging and relevant to their role, valued its interactive content and the opportunity for reflection and implementation of skills between sessions. A statistically significant increase was found pre- to immediate post-training on staff communication knowledge (CI 0.01-1.2) and confidence in caring for people with dementia (CI 4.9-7.3). Staff reported a range of areas of learning aligned to the trainables. Over 90% of staff said they planned to implement the training in practice and many provided concrete examples of application. Challenges in applying the specific communication principals taught to wider practice situations were identified by some staff. Impact on observed patient agitation levels and staff communication practices were challenging to evidence objectively in the context of the acute hospital environment. Conclusion/original contribution It is feasible, although challenging, to deliver empirically based communication skills training to support acute hospital staff to better care for patients with dementia who may become distressed. It can lead to perceived increases in knowledge and confidence to support distress in this population.

Abstract

Introduction Constant observation is widely used with people living with dementia admitted to hospital when identified at risk of harm to themselves or others. Staff allocated to closely monitor individual or small groups of patients intervene when there are safety concerns and may engage with patients’ psychosocial needs. However, care is inconsistent and dependent upon individual and organisational factors. This study aimed to understand the work of implementing a co-designed intervention for facilitating person-centred approaches during constant observation practices. Methods A convergent parallel mixed-methods multi-site case study was adopted to explore implementation over 12 weeks in three English hospitals. The study recruited participants from six wards and one hospital-wide team. Qualitative and quantitative data involved: i) observations of staff-patient interactions (four time points), ii) in-depth interviews with hospital staff (one time point) iii) staff surveys (two time points). Qualitative data analysis was organised using Normalisation Process Theory to map and understand the implementation process. NOrmalisation MeAsure Development (NoMAD) survey data were analysed using descriptive statistics. Findings We recruited 163 participants – staff (n = 88), people living with dementia (n = 71), family supporters (n = 4). The intervention was well received and considered useful by staff. Incremental changes, such as staff initiating non-task related conversations with patients and using tools to inform actions for reducing distress, were observed. However, establishing the importance of psychosocial, alongside physical and medical, needs was not achieved. Staff found it difficult to challenge the dominance of medical management and organisations’ priorities to minimise risk. Fears that discussions about constant observation with family supporters might upset them or result in accusations of inadequate care inhibited work to collect and share potentially useful information. Conclusion The intervention endorsed and supported staff to focus on the quality of their care work; this was not usual practice. Routine use was impacted by prior knowledge of dementia, how the intervention aligned with ward practice and competing priorities. Additional work is required to support the shift from work organised as a reaction to urgent, risky situations to work that supports prevention and enhances care.

Background Four main types of cluster-randomised trial (CRT) are well known: parallel-group (PG), factorial, stepped-wedge and crossover designs. This established typology relates to how clusters are exposed to intervention(s) or control(s) during the trial. Published guidance is lacking on how to link design features to how individuals within clusters may be exposed and measured. Thus, the aim of this paper was to develop a classification system for different types of cluster membership in CRTs, focussing on PG designs and building on our experiences of delivering a care home trial. Methods The classification system was developed in seven stages: (i) a scoping review was conducted to explore the use of open-cohort PG-CRTs in a range of settings; (ii) a version of the classification system was developed, using the stepped-wedge CRT typology; (iii) this was tested using a sample of published trials from the scoping review; (iv) a second version was developed, reviewed and further amendments made to aid clarity; (v) 15 trialists with experience of CRTs in a range of settings provided feedback in a 1-day, face-to-face user engagement workshop; (vi) a wider group of 39 trialists completed an online survey, providing examples and additional feedback; and (vii) all authors reviewed and approved the final version. Results Six types of cluster membership in PG-CRTs are proposed: the closed-cohort and cross-sectional designs already established, a new-admission-continuous-recruitment, open-cohort with discrete-recruitment, open-cohort with continuous-recruitment, and a non-standard closed-cohort design. The final classification system is made up of six core design features and five additional design considerations. Diagrams of each type of cluster membership are introduced and used to illustrate examples. Conclusions Implications of distinctions between the six types of cluster membership for the statistical analysis require further research. CONSORT guidance needs updating to include specific guidance on reporting the type of cluster membership alongside the description of how design features apply to clusters. Further methodological research is required into both the statistical and the practical implications of adopting previously unlabelled but frequently used types of cluster membership.

Background: This trial investigated the (cost) effectiveness of Dementia Care Mapping (DCM™) for reducing agitation in care home residents with dementia compared to usual care (DCM™ EPIC trial). Methods: Pragmatic, cluster randomised controlled trial, with follow-up at 6- and 16-months. Stratified randomisation of 50 care homes to intervention (n=31) or control (n=19). Care home eligibility included recruitment of ≥10 residents, not subject to improvement notices or using DCM™ in the previous 18-months. At baseline and 16-months, 726 and 261 residents were recruited, respectively. Resident eligibility included: permanent residence; diagnosis of dementia/score of ≥4 on the Functional Assessment Staging of Alzheimer's Disease; not at end-of-life/permanently cared for in bed. Clusters were not blinded to allocation. Three DCM™ cycles, delivered by two trained care home staff were scheduled, mirroring standard procedures; supported during cycle one by a DCM™ expert. The primary outcome was agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16-months. Secondary outcomes included neuropsychiatric symptoms and quality of life. Findings: DCMTM was not superior to control on any primary or secondary outcomes (n=675 residents: 287 control, 388 intervention). The adjusted mean difference in CMAI score was -2.11 points in the intervention versus control (95% CI -4.66 to 0.44, p = .104, adjusted ICC control=0, intervention 0.001). Sensitivity analyses supported the primary analysis. Intervention adherence was problematic; only 26% of homes completed >1 DCM™ cycle. Incremental cost per unit improvement in CMAI for baseline recruited residents (n=726, 418 intervention, 308 control) was £289 for intervention versus control. Interpretation: There was no evidence of benefit of DCM™; an important finding given its wide, international use. Further research should urgently consider modifications to existing DCM™ implementation models, or other approaches to reducing agitation in care home residents. Trial Number: Current Controlled Trials ISRCTN82288852 Funding Statement: National Institute for Health Research Health Technology Assessment programme (project number 11/15/13). Declaration of Interests: Claire A Surr was previously employed by the University of Bradford, who own the IP to the DCMTM intervention tested in this trial. In this role she held responsibility for DCM training and method 21 development. She was a technical author on the British Standards Institute PAS 800 guide on implementing DCMTM in health and social care provider organizations. She declares personal fees from Hawker publications outside the submitted work. David Meads reports being a member of the NIHR HTA Elective and Emergency Specialist Care Panel (EESC) being a member of the NIHR PGfAR funding panel. Clive Ballard reports grants and personal fees from Acadia pharmaceutical company, grants and personal fees from Lundbeck, personal fees from Roche, personal fees from Otusaka, personal fees from Novartis, personal fees from Eli Lilly, personal fees from Pfizer, outside the submitted work. Murna Downs works at the University of Bradford which holds the Intellectual Property for DCMTM and runs courses for practitioners and professionals who wish to learn how to use the method. Louise Robinson reports grants from NIHR Senior Investigator Award, grants from NIHR Translational Professorship Award, outside the submitted work; and NIHR board membership of the Primary Care Themed Call board. Amanda Farrin reports membership of the NIHR HTA Funding Boards Policy group, the NIHR HTA Clinical Evaluation and Trials board and, previously, the NIHR HTA Themed Call board. All other authors have no conflicts to declare. Ethics Approval Statement: The study was granted ethical approval by NRES Committee Yorkshire & The Humber - Bradford Leeds REC ref 13/YH/0016.

Background: The quality of care delivered to people with dementia in hospital settings is of international concern. People with dementia occupy up to one quarter of acute hospital beds, however, staff working in hospitals report lack of knowledge and skills in caring for this group. There is limited evidence about the most effective approaches to training hospital staff on dementia. Objective: The purpose of this literature review was to examine published evidence on the most effective approaches to dementia training and education for hospital staff. Design and review methods: The review was conducted using critical synthesis and included qualitative, quantitative and mixed/multi-methods studies. Kirkpatrick’s four level model for the evaluation of training interventions was adopted to structure the review. Data sources: The following databases were searched: MEDLINE, PsycINFO, CINAHL, AMED, British Education Index, Education Abstracts, ERIC (EbscoHost), The Cochrane Library-Cochrane reviews, Economic evaluations, CENTRAL (Wiley), HMIC (Ovid), ASSIA, IBSS (Proquest), Conference Proceedings Citation Indexes (Web of Science), using a combination of keyword for the following themes: Dementia/Alzheimer’s, training/education, staff knowledge and patient outcomes. Results: A total of 20 papers were included in the review, the majority of which were low or medium quality, impacting on generalisability. The 16 different training programmes evaluated in the studies varied in terms of duration and mode of delivery, although most employed face-to-face didactic techniques. Studies predominantly reported on reactions to training and knowledge, only one study evaluated outcomes across all of the levels of the Kirkpatrick model. Key features of training that appeared to be more acceptable and effective were identified related to training content, delivery methods, practicalities, duration and support for implementation. Conclusions: The review methodology enabled inclusion of a broad range of studies and permitted common features of successful programmes to be identified. Such features may be used in the design of future dementia training programmes, to increase their potential for effectiveness. Further research on the features of effective dementia training for hospital staff is required.

BACKGROUND: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over-reliance on family members as proxies and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. OBJECTIVE: This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. DESIGN: Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. PARTICIPANTS: Nine people living with dementia and five family members participated in this study. RESULTS: Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. CONCLUSIONS: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.

Background: With increasing numbers of people in the UK living with dementia, the provision of good quality person-centred care that meets the often complex needs of this population is required. Given the majority of people with dementia live in the community, significant care and support will be provided by primary care services. This means the primary care workforce needs appropriate education to ensure they have the right knowledge, skills and attitudes to meet these care needs. However, little is understood about the most successful approaches to dementia education in this setting. Methods: An in-depth case study was undertaken in a single primary care organisation with the aim of exploring the impact of a person-centred dementia educational programme, and identify barriers and facilitators to implementation. Data was gathered from a wide range of sources and analysed using Kirkpatrick’s evaluative framework. Results: Initially, staff learners struggled to incorporate the ‘whole-person’ approach to dementia care, but gained knowledge and confidence through self-directed learning. They reacted positively to the training and appreciated opportunities to learn from peers in other services. They identified improvements in communication and prescribing practices, despite difficulties implementing changes during busy periods. Resultant impact for service users included more timely routine appointments, and positive satisfaction ratings from patients and families. Conclusions: The findings indicate the perceived value of person-centred dementia education for primary care. Further recommendations for provision in this service setting include tailored programmes designed collaboratively with clinical service providers, and bringing together an interdisciplinary mix of learners to enhance knowledge exchange.

Qualitative research methodologies offer valuable insight into important aspects of the lived experience of dementia, and provide inclusion opportunities for those with moderate to severe cognitive impairment. Narrative methods such as Creative Non-fiction offer an evocative method to utilise direct accounts of the experience of living with dementia, to attenuate professionals and academics to best practice approaches to supporting their needs. Men face unique challenges in finding appropriate support to help them to maintain a sense of identity following a diagnosis of dementia. Yet, academic literature seldom uses the voices of those affected when highlighting this issue. This study presents ethnographic data written as a composite narrative using Creative Non-fiction, to explore how social connections are formed through a structured sports-based reminiscence intervention for men living with dementia. This article demonstrates how the Creative Non-fiction approach can be applied to ethnographic data, offering a detailed description of the writing process applied in this study. In particular, we discuss in detail the ways in which CNF writing techniques have helped to enhance the communication of key mechanisms observed during fieldwork.

This research is drawn from findings that, while Black African and Caribbean people have a higher chance of developing vascular dementia, they are often diagnosed at advanced stages of dementia because they present later to dementia care facilities. This poses significant concerns due to implications for poorer treatment outcomes and higher treatment cost. Interventions to support timely help seeking for dementia have been designed for BAME communities and implemented through diverse healthcare facilities but the challenge of late dementia help seeking persists among the Black African and Caribbean population specifically. Community pharmacies are healthcare facilities conveniently located within the community, thus the potential for timely dementia help seeking support to be provided to the Black African and Caribbean population through this health facility is explored in this research study. A four-stage multi-method investigation was conducted. Starting with a scoping review which explored the range of existing dementia help seeking interventions designed for the BAME population, the research continued with two surveys. One survey provided initial insight into the dementia help seeking behaviour of the Black African and Caribbean people and the other examined the initial disposition of community pharmacists towards providing dementia help seeking support to the target population. The last stage was a qualitative interview study which built on the survey findings to explore the potentials for community pharmacists to offer the needed support. While personal and systemic difficulties experienced on the help seeking journey of the Black African and Caribbean people contributed to their delayed help seeking for dementia, the community pharmacists were willing and believed they were suitably positioned to provide initial as well as ongoing dementia help seeking support to this population. Possible interventions were grouped into community pharmacy-based individual public health engagements, media engagement and wider community engagement, although the community pharmacists envisaged among other factors, a lack of adequate funding as a probable barrier to the implementation of these interventions.

Background: This trial investigated the (cost) effectiveness of Dementia Care Mapping (DCM™) for reducing agitation in care home residents with dementia compared to usual care (DCM™ EPIC trial). Methods: Pragmatic, cluster randomised controlled trial, with follow-up at 6- and 16-months. Stratified randomisation of 50 care homes to intervention (n=31) or control (n=19). Care home eligibility included recruitment of =10 residents, not subject to improvement notices or using DCM™ in the previous 18-months. At baseline and 16-months, 726 and 261 residents were recruited, respectively. Resident eligibility included: permanent residence; diagnosis of dementia/score of =4 on the Functional Assessment Staging of Alzheimer's Disease; not at end-of-life/permanently cared for in bed. Clusters were not blinded to allocation. Three DCM™ cycles, delivered by two trained care home staff were scheduled, mirroring standard procedures; supported during cycle one by a DCM™ expert. The primary outcome was agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16-months. Secondary outcomes included neuropsychiatric symptoms and quality of life. Findings: DCMTM was not superior to control on any primary or secondary outcomes (n=675 residents: 287 control, 388 intervention). The adjusted mean difference in CMAI score was -2.11 points in the intervention versus control (95% CI -4.66 to 0.44, p = .104, adjusted ICC control=0, intervention 0.001). Sensitivity analyses supported the primary analysis. Intervention adherence was problematic; only 26% of homes completed >1 DCM™ cycle. Incremental cost per unit improvement in CMAI for baseline recruited residents (n=726, 418 intervention, 308 control) was £289 for intervention versus control. Interpretation: There was no evidence of benefit of DCM™; an important finding given its wide, international use. Further research should urgently consider modifications to existing DCM™implementation models, or other approaches to reducing agitation in care home residents. Trial Registration Number: Registered with the International Standard Randomised Controlled Trial Register (ISRCTN) reference 82288852. Funding Statement: National Institute for Health Research Health Technology Assessment programme (project number 11/15/13). Declaration of Interests: Claire A Surr was previously employed by the University of Bradford, who own the IP to the DCM™ intervention tested in this trial. In this role she held responsibility for DCM training and method development. She was a technical author on the British Standards Institute PAS 800 guide on implementing DCM™ in health and social care provider organizations. She declares personal fees from Hawker publications outside the submitted work. David Meads reports being a member of the NIHR HTA Elective and Emergency Specialist Care Panel (EESC) being a member of the NIHR PGfAR funding panel. Clive Ballard reports grants and personal fees from Acadia pharmaceutical company, grants and personal fees from Lundbeck, personal fees from Roche, personal fees from Otusaka, personal fees from Novartis, personal fees from Eli Lilly, personal fees from Pfizer, outside the submitted work. Murna Downs works at the University of Bradford which holds the Intellectual Property for DCM™ and runs courses for practitioners and professionals who wish to learn how to use the method. Louise Robinson reports grants from NIHR Senior Investigator Award, grants from NIHR Translational Professorship Award, outside the submitted work; and NIHR board membership of the Primary Care Themed Call board. Amanda Farrin reports membership of the NIHR HTA Funding Boards Policy group, the NIHR HTA Clinical Evaluation and Trials board and, previously, the NIHR HTA Themed Call board. All other authors have no conflicts to declare Ethics Approval Statement: The study was granted ethical approval by NRES Committee Yorkshire & The Humber - Bradford Leeds REC ref 13/YH/0016. The trial will be performed in accordance with the recommendations guiding physicians in biomedical research involving human subjects adopted by the 18th World Medical Assembly, Helsinki, Finland, 1964, amended at the 52nd World Medical Association General Assembly, Edinburgh, Scotland, 1996. Informed written consent will be obtained from the care homes, staff and residents prior to entry into the trial.

Objective In the United Kingdom (UK), 1 in 13 people living with dementia also have cancer. At some point, 41.3% of this population group will require care home support. Limited research has examined the care and support needs of people with dementia and comorbid cancer (DCC) in nursing homes (NHs). This study aimed to explore the care experiences of NH residents with DCC, their families, nursing home staff (NHS) and healthcare professionals (HCPs), and to identify challenges and good practices, to develop recommendations for practice improvement. Methods A focussed ethnography using interviews, observations, informal conversations, and review of care plan documentation. Data were analysed using ethnographically informed reflexive thematic analysis. Results Eight HCPs, Six NHS, 5 family caregivers and 7 residents with DCC were recruited from five NHs in Northern England. Two themes were developed: Complexities around cancer referral and treatment decision‐making and Relative invisibility of a resident's clinical cancer diagnosis. Findings suggested residents with DCC were not included in best interest decision‐making due to the potential distress knowing about a cancer diagnosis would cause. Families, HCPs and NH staff made collective decisions on the behalf of residents. Often cancer referral was deemed not appropriate. Thus, people with dementia had a clinical‐only cancer diagnosis, resulting in limited formal information about the cancer in care documentation and staff knowledge. Potential consequences of having a clinical‐only cancer diagnosis included: misattributing cancer symptoms to dementia, reactive care responses to cancer symptoms and the possibility of inadequately managed cancer symptoms. Conclusions Implementing earlier discussions about feasible care outcomes is crucial. These conversations should include considerations around hospital referral for oncology care or care through palliation in the NH. Without appropriate recognition of a clinical‐only cancer diagnosis and support for staff it could lead to advancement of symptoms that might be challenging and less well managed. We outline several recommendations to support NHS to deliver person‐centred care to residents with DCC.

Conducting trials in care homes is complex on multiple levels. Here, we focus on recruitment issues surrounding: a) care home selection to participate in research, b) selection and involvement of participants fulfilling various roles (residents, relatives, staff), c) consent in the context of the Mental Capacity Act, and d) scheduling researcher time to undertake complex recruitment processes across multiple care homes. To ensure generalizability of results, DCM™ EPIC care homes were selected to form a stratified random sample of a known sampling frame. This was done by first defining catchment areas around each of three participating UK hubs. Randomly ordered listings of all eligible care homes within those areas were then produced, with batches of care homes sent trial information and followed up by researchers. Trial participation for a home requires agreement to take part from residents and their relatives (as personal consultees and providers of proxy data), as well as staff involvement to provide data (proxy and self) and be trained to deliver the DCMTM intervention. This requires complex, lengthy discussions with all parties, provision of tailored information sheets specific to intended role and capacity, and involvement of trial experts to explain DCMTM in more detail to staff. The trial aims to recruit 50 care homes (750 residents) by the end of 2015. Thus there is the need to balance the complexity of processes with required speed of recruitment – a task which is achieved by detailed monitoring of projected researcher workload in relation to care home commitments and availability.

Background Up to 90 % of people living with dementia in care homes experience one or more behaviours that staff may describe as challenging to support (BSC). Of these agitation is the most common and difficult to manage. The presence of agitation is associated with fewer visits from relatives, poorer quality of life and social isolation. It is recommended that agitation is treated through psychosocial interventions. Dementia Care Mapping™ (DCM™) is an established, widely used observational tool and practice development cycle, for ensuring a systematic approach to providing person-centred care. There is a body of practice-based literature and experience to suggests that DCM™ is potentially effective but limited robust evidence for its effectiveness, and no examination of its cost-effectiveness, as a UK health care intervention. Therefore, a definitive randomised controlled trial (RCT) of DCM™ in the UK is urgently needed. Methods/design A pragmatic, multi-centre, cluster-randomised controlled trial of Dementia Care Mapping (DCM™) plus Usual Care (UC) versus UC alone, where UC is the normal care delivered within the care home following a minimum level of dementia awareness training. The trial will take place in residential, nursing and dementia-specialist care homes across West Yorkshire, Oxfordshire and London, with residents with dementia. A random sample of 50 care homes will be selected within which a minimum of 750 residents will be registered. Care homes will be randomised in an allocation ratio of 3:2 to receive either intervention or control. Outcome measures will be obtained at 6 and 16 months following randomisation. The primary outcome is agitation as measured by the Cohen-Mansfield Agitation Inventory, at 16 months post randomisation. Key secondary outcomes are other BSC and quality of life. There will be an integral cost-effectiveness analysis and a process evaluation. Discussion The protocol was refined following a pilot of trial procedures. Changes include replacement of a questionnaire, whose wording caused some residents distress, to an adapted version specifically designed for use in care homes, a change to the randomisation stratification factors, adaption in how the staff measures are collected to encourage greater compliance, and additional reminders to intervention homes of when mapping cycles are due, via text message. Trial registration Current Controlled Trials ISRCTN82288852. Registered on 16 January 2014. Full protocol version and date: v7.1: 18 December 2015.

Background: People with dementia occupy up to one quarter of acute hospital beds. However, the quality of care delivered to this patient group is of national concern. Staff working in acute hospitals report lack of knowledge, skills and confidence in caring for people with dementia. There is limited evidence about the most effective approaches to supporting acute hospital staff to deliver more person-centred care. Objectives: This study aimed to evaluate the efficacy of a specialist training programme for acute hospital staff regarding improving attitudes, satisfaction and feelings of caring efficacy, in provision of care to people with dementia. Design: A repeated measures design, with measures completed immediately prior to commencing training (T1), after completion of Foundation level training (T2: 4-6 weeks post-baseline), and following Intermediate level training (T3: 3-4 months post-baseline). Setting: One NHS Trust in the North of England, UK. Participants: 40 acute hospital staff working in clinical roles, the majority of whom (90%) were nurses. Methods: All participants received the 3.5 day Person-centred Care Training for Acute Hospitals (PCTAH) programme, comprised of two levels, Foundation (1/2 day) and Intermediate (3 days), delivered over a 3-4 month period. Staff demographics and previous exposure to dementia training was collected via a questionnaire. Staff attitudes were measured using the Approaches to Dementia Questionnaire (ADQ), satisfaction in caring for people with dementia was captured using the Staff Experiences of Working with Demented Residents questionnaire (SEWDR) and perceived caring efficacy was measured using the Caring Efficacy Scale (CES). Results: The training programme was effective in producing a significant positive change on all three outcome measures following intermediate training compared to baseline. A significant positive effect was found on the ADS between baseline and after completion of Foundation level training, but not for either of the other measures. Conclusions: Training acute hospital staff in Intermediate level person-centred dementia care is effective in producing significant improvements in attitudes towards and satisfaction in caring for people with dementia and feelings of caring efficacy. Foundation level training is effective in changing attitudes but does not seem to be sufficient to bring about change in satisfaction or caring efficacy.

Background To explore the design, delivery models and identify good and innovative practices in Memory Assessment Services (MAS) in England and Wales. Methods A two-stage service evaluation comprising (1) on-line survey of MAS providers to identify features of the commissioning models, service design, delivery, and challenges alongside examples of good/innovative practice; (2) qualitative case studies using video/telephone interviews with key staff and people who had used the service. Results The 49 respondents to the survey reported a shift in delivery of MAS post COVID and identified key areas for improvement, including a need for specialist staff, support for MCI and rarer dementias, and capacity for post diagnostic support. The 15 case studies illustrated good practice and innovation focusing on post diagnostic support, equity of access, working with external services/service location, MCI and rarer dementia and involving specialist staff. Conclusions The evaluation speaks to the importance of (re)evaluation of services to identify local need and the importance of commissioning based on local need and innovative approaches that my sit outside of ‘typical’ MAS pathways.

Purpose of review This narrative review examines recent research on end of life (EOL) care for people with dementia and comorbid cancer, highlighting the complexity and challenge of providing effective EOL care for this group and areas of interest for future research. Recent findings People with cancer and dementia and their family/supporters have more complex care and support needs at EOL that are less well met than those of older adults with cancer alone, including questionable use of aggressive EOL care interventions, poorer access to specialist palliative care teams and poor pain management. Those diagnosed with dementia at the same time as, or after their cancer diagnosis, are at greater risk of aggressive EOL care and EOL cancer treatment and care plans that are not able to meet their care needs as dementia progresses. Summary There is a lack of research on EOL care for people with cancer and dementia. There is little understanding of what good care for this population looks like and if and how EOL care can best meet the needs of people with cancer and dementia or their carers/supporters. More research is needed to inform improved care for this population.

BACKGROUND: Care aides provide up to 70-90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents' quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings. The aim of this study was to gain an understanding of the perspectives, experiences, and working conditions of care aides delivering end-of-life care in LTC in a rural setting, within a high-income country. METHODS: Data were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 h) with 31 care aides; and observation (170 h). Data were analysed using Reflexive Thematic Analysis. RESULTS: Two themes were identified: (i) the emotional toll that delivering this care takes on the care aids and; (ii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are no adequate resources available for care aides' to support the mental and emotional aspects of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing. CONCLUSIONS: To facilitate the health and well-being of this essential workforce internationally, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides' mental health and emotional well-being in this role. Implications for practice highlight the need for greater care and attention played on the part of the educational settings during their selection and acceptance process to train care aides to ensure they have previous experience and societal awareness of what care in LTC settings entails, especially regarding EoL experiences.

Background: Prescribing, dispensing and administering pro re nata (PRN; as needed or necessary, as determined by an individual) medicines to people with intermittent or short-term conditions is a potential area for medication errors and inappropriate prescribing and administration. In people with dementia, regular PRN medicines use can demonstrate good practice when appropriate or poor in situations where their use is not recommended. However, the frequency of PRN prescription and administration within long-term care settings (care homes) for people with dementia is largely unknown. A limited number of studies worldwide suggest variation between countries. Objective: To describe the prescription and administration rates of PRN medicines for people with dementia in UK care homes. Setting: Fifty UK care homes. Method: Medication details were collected from review of residents’ medicines records within the care home for the previous month. Main outcome measure: Prescription and administration of PRN medicines for the treatment of behaviours associated with neuropsychiatric symptoms and pain. Results: The most commonly prescribed PRN medicines were analgesics (35.3%), although lower levels of PRN prescription were observed compared to recent studies. The percentage of residents receiving PRN administrations varied, with 20% for antipsychotics, 50% for benzodiazepines, 59% for analgesics, and 85.7% for nonbenzodiazepine hypnotics being administered. Conclusion: Further research is needed to understand the decision making in PRN prescription and administration within long-term care. The prescribing of potentially inappropriate medicines remains a problem in long-term care settings and pharmacists have a key role in reducing inappropriate polypharmacy by undertaking medication reviews that consider both regular and PRN medicines.

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits; [1] improving the delivery of person-centred care, [2] hearing the voice of people with dementia, [3] residents spending time with researchers, [4] improving researcher understanding, and [5] having an evidence base from multiple sources. We also identified five main challenges; [1] effective communication, [2] fluctuating capacity, [3] causing distress to residents, [4] time pressures, and [5] staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection.

Policy and practice guidelines recommend person-centred care (PCC) to support people to live well with dementia in long-term care (LTC). Therefore, staff working in LTC settings need to be trained in dementia awareness and PCC. However, the access to, content of and reach of training across LTC settings can be varied. Data on current and ongoing access to PCC training can form and important component of data gathered on usual care (UC) in research studies, in particular clinical trials within LTC. However, no suitable assessment tools are available to measure dementia awareness and PCC training availability, content and reach. This paper describes the development of a training audit tool to meet this need for a UC measure of dementia awareness and PCC training. The ‘Assessment of Dementia Awareness and Person-centred care Training’ (ADAPT) tool was based on a review of published PCC literature and consultation with dementia and aged care experts. The ADAPT tool was piloted in 13 LTC facilities the UK and Australia, before being used to assess the content of dementia and PCC awareness training in 50 UK settings in a randomized controlled trial (RCT) as part of a UC recording. Following pilot testing, modifications to the ADAPT tool’s wording were made to enhance item clarity. When implemented in the RCT, pre-baseline training assessment data showed that the ADAPT tool was able to differentiate between LTC and identify settings where further dementia awareness training was required. ADAPT was then used as a method of recording data on dementia awareness and PCC training as part of UC data collection. The ADAPT tool is suitable for use by researchers to establish the availability, content and reach of dementia and PCC awareness training to staff within research studies.

This report presents the findings of a scoping evaluation of the dementia training needs of care homes within the Leeds City region. Commissioned by Leeds City Council and undertaken by researchers from the Centre for Dementia Research at Leeds Beckett University, the evaluation comprised a short on-line survey of care home managers and training leads in care homes across Leeds. The survey was then followed up with two consultation events, one with care home managers and those responsible for education and training in care homes, and one event with people either supporting families affected by dementia or who were family carers with experience of care home care for people with dementia. As a result of the evaluation this report makes recommendations for future dementia training priorities for care homes across Leeds.

Background There has been increasing interest in dementia, the arts and creativity across different disciplines in recent years, with previous literature illustrating the benefits of visual arts for people with dementia. Method A mixed-methods, quasi-experimental, pre/post design to assess the feasibility, acceptability and preliminary efficacy of a newly developed therapeutic, person-centred visual art intervention for people with dementia attending a day care centre or residing in an assisted living facility. Results Five themes were identified from the interviews. Two themes reflected the feasibility/acceptability and the perceived impacts of the intervention, and three themes represented perceived successful elements: participant choice, socialisation and mentally stimulating activities. The quantitative data tentatively indicated enhanced social functioning and quality of life scores post-intervention. Conclusion These findings indicate that engagement with visual art is effective for people with dementia, and taking into account the factors that impact on feasibility and acceptability will promote future robust evaluation.

Although there has been growing interest in visual art interventions for people with dementia, there is a restricted evidence base regarding their theoretical basis. To address this gap, this systematic literature review explored how and why visual art interventions work in dementia care. Common features of successful visual art interventions were identified, including: intervention ‘dose,’ session content, participant choice, artistic ability, the role of the facilitator/therapist, group work, and setting. Understanding the mechanisms and/or processes of visual art interventions is important for future development, evaluation, and implementation.

Objective Investigate the construct validity, criterion validity and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L. Methods The analysis used a three-wave, individual-level dataset of 1,004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal- and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, as well as other non-utility cognitive (FAST, CDR, CMAI) and HRQOL measures (QOL-AD-NH, QUALID). Construct validity, criterion validity and responsiveness was assessed using correlation, Bland-Altman plots and panel data regression models. Results Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR and CMAI, but did capture the resident’s own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than self-completed EQ-5D-5L. These formal- and informal-carer proxy-measures also better reflected changes in FAST, CDR and CMAI but didn’t capture the resident’s own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxies own view of the resident’s HRQOL (QUALID). This indicates discrepancies between a proxies-view and residents-view of the impact tangible declines in health, cognition or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, EQ5D-5L-proxy was typically more responsive than DEMQOL-Proxy-U to changes in CDR, FAST and CMAI, indicating that use of DEMQOL-Proxy-U is not always justified. Conclusion Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care.

Abstract

Background: Care aides provide upwards of 90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents’ quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings.Methods: Data were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 hours) with 31 care aides; and naturalistic observation (170 hours). Data were analysed using Reflexive Thematic Analysis.Results: Three themes were identified: (i) the lack of training and preparedness for the role of EoL care; (ii) the emotional toll that delivering this care takes on the care aids and; (iii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are not adequate resources available for care aides’ to support the mental and emotional aspect of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing. Conclusions: The care aides’ role in LTC is of increasing importance, especially in relation to the ageing population and the delivery of EoL care. To facilitate the health and wellbeing of this essential workforce, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides' mental health and emotional wellbeing in this role.

Abstract Objectives The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. Design Cross-sectional survey study. Data collection occurred in 2017. Settings Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. Participants All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). Outcomes Knowledge, attitude and confidence of health and social care staff. Results Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). Conclusion The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

Ensuring an informed and effective dementia workforce is of international concern, however there remains limited understanding of how this can be achieved. This systematic review aimed to identify factors associated with effective dementia educational programmes. Critical Interpretive Synthesis underpinned by Kirkpatrick’s return on investment model for evaluation of education was applied. One hundred and fifty-two papers of variable quality were included in the review. Common features of more efficacious educational programmes included the need for educational programmes to: be relevant to participants’ role and experience; involve active face-to-face participation; underpin practice-based learning with theory; be delivered by an experienced facilitator; have a total duration of at least eight hours with individual sessions of 90 minutes or more; support application of learning in practice; and provide a structured tool or practice guideline to underpin care practice. Further robust research is required to develop the evidence base; however, the findings of this review have relevance for all working in workforce education.

Background: Up to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. Little is still known about the most effective approaches to the design, delivery and implementation of dementia training. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia. Methods: An embedded, collective case study was undertaken in three care home provider organisations who had responded to a national training audit. Data collected included individual or small group interviews with training leads, facilitators, staff attending training, managers, residents and their relatives. Observations of care practice were undertaken using Dementia Care Mapping. Training delivery was observed and training materials audited. A within case analysis of each site, followed by cross case analysis using convergence coding was undertaken. Results: All sites provided bespoke, tailored training, delivered largely using face-to-face, interactive methods, which staff and managers indicated were valuable and effective. Self-study booklets and on-line learning where were used, were poorly completed and disliked by staff. Training was said to improve empathy, knowledge about the lived experience of dementia and the importance of considering and meeting individual needs. Opportunities to continually reflect on learning and support to implement training in practice were valued and felt to be an essential component of good training. Practice developments as a result of training included improved communication, increased activity, less task-focussed care and increased resident well-being. However, observations indicated positive well-being and engagement was not a consistent experience across all residents in all sites. Barriers to training attendance and implementation were staff time, lack of dedicated training space and challenges in gaining feedback on training and its impact. Facilitators included a supportive organisational ethos and skilled training facilitation. Conclusions: Effective training is tailored to learners’, delivered face-to-face by an experienced facilitator, is interactive and is embedded within a supportive organisational culture/ethos. Further research is needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

BACKGROUND: Despite people living with dementia representing a significant proportion of health and social care users, until recently in the United Kingdom (UK) there were no prescribed standards for dementia education and training. This audit sought to review the extent and nature of dementia education and training offered to health and social care staff in the UK against the standards described in the 2015 Dementia Training Standards Framework, which describes the knowledge and skills required of the UK dementia workforce. METHODS: This audit presents national data concerning the design, delivery, target audience, length, level, content, format of training, number of staff trained and frequency of delivery within existing dementia training programmes offered to health and social care staff. The Dementia Training Standards Framework was used as a reference for respondents to describe the subjects and learning outcomes associated with their training. RESULTS: The findings are presented from 614 respondents offering 386 training packages, which indicated variations in the extent and quality of training. Many training packages addressed the subjects of 'person-centred care', 'communication', 'interaction and behaviour in dementia care', and 'dementia awareness'. Few training packages addressed subjects concerning 'pharmacological interventions in dementia care', 'leadership' and 'end of life care'. Fewer than 40% of The Dementia Training Standards Framework learning outcomes targeted to staff with regular contact with people with dementia or in leadership roles were covered by the reported packages. However, for training targeted at increasing dementia awareness more than 70% of the learning outcomes identified in The Dementia Training Standards Framework were addressed. Many training packages are not of sufficient duration to derive impact; although the majority employed delivery methods likely to be effective. CONCLUSIONS: The development of new and existing training and education should take account of subjects that are currently underrepresented and ensure that training reflects the Training Standard Framework and evidence regarding best practice for delivery. Lessons regarding the limitations of training in the UK serve as a useful illustration of the challenge of implementing national dementia training standards; particularly for countries who are developing or have recently implemented national dementia strategies.

Background Despite increasing numbers of men living in isolation with dementia in the community, uptake of supportive interventions remains low. This may be because of limited availability of activities suited to men’s interests. One organisation reporting higher attendance from men is Sporting Memories, offering inclusive sports-based reminiscence and physical activities for men living with dementia. This study aimed to explore the impact of Sporting Memories intervention on men living with dementia. Method This study was an ethnography employing techniques of participant observation, informal conversations and semi-structured interviews with group participants. Data were woven into a series of narratives using creative non-fiction, to bring life to the first-hand accounts of participants and experiences within a typical group setting. Findings The groups provided an environment for men with dementia to explore, reflect upon and reinforce their masculine identities through the subject of sport. Physical activities further facilitated this embodied demonstration for some, although this was not a feature of all sessions. Conclusions The content of Sporting Memories group sessions provides a vehicle for men to retain an important aspect of personhood. They also hold the potential to present opportunities for men to feel a sense of value by contributing to sessions in varied ways. Facilitators and volunteers require support and training to ensure this benefit is maintained.

Background: This paper aims to advance understanding of ‘what works’ in visual art interventions from the perspective of key stakeholders’, including people with dementia, their family members and visual art professionals. Method: Semi-structured interviews were conducted with 22 participants, exploring their perceptions on barriers, facilitators, perceived benefits, experiences of delivering/attending a visual art intervention, and any recommendations for implementation. Results: Five factors were identified within the interviews that indicated important considerations for intervention structure and implementation, including: benefits of group work, a skilled facilitator, participant choice, artistic ability, and activity content. Whilst art therapists expressed a clear protection of professional boundaries, the success of all of the visual art interventions was largely attributed to the supportive facilitator who possessed certain core values such as empathy and compassion and had knowledge in both artistic practice and the impact of living with dementia. It was clear the group dynamic was valued, and it was important to provide enjoyable, failure-free activity content with a strong focus on the creative process. Conclusion: These findings offer a direction for evidence-based practice when implementing visual art interventions.

Background Discussing pharmaceutical treatment for dementia is challenging because of variation in disease progression, lack of curative treatments, and communication difficulties. Research in the context of dementia suggests shared decision making is limited, this study examined how dementia medications are discussed in practice. Methods Focused video/audio ethnography of clinical appointments (n = 14), semi-structured interviews with patients/supporters (n = 23) and clinicians (n = 5) were employed to examine communication practices. Results Two themes developed; Framing and understanding of information in the context of uncertainty explores how uncertainties around risks and benefits are understood. ‘Not worth the risk’ or ‘nothing to lose’ presents how patients/supporters and clinicians balance individuals’ contexts/perceived risks/benefits. In the absence of certainty around potential benefits, risk often informed decision-making, particularly for frailer or more vulnerable patients. Conclusions Clinicians should be aware of their influence on decision-making and be cognisant of the way that they frame opinions, which are largely based on clinical experience. Prescribers would benefit from a standardised information source which enables them to describe the likelihood and magnitude of benefits and side effects in a universal way. Accessible information for patients and relatives about the same is also recommended. Patients and relatives make their decisions to take medications in the context of relative uncertainty about the likelihood of benefits, with risk playing a pivotal role in decision making for some.

Objective Constant observation is used in hospitals with people with dementia to manage their safety. However, opportunities for proactive care are not consistently recognised or utilised. A systematic review of constant observation was conducted to understand measures of effectiveness and facilitators for person-centred approaches. Method Electronic databases were searched between 2010 – 2022. Four reviewers completed screening, quality assessments and data extraction with 20% checked for consistency. Findings were presented through narrative synthesis (PROSPERO registration CRD42020221078). Findings Twenty-four studies were included. Non-registered staff without specific training were the main providers of constant observation. Assessments and processes clarifying the level of observation encouraged reviews that linked initiation and discontinuation to a patient’s changing needs. Examples of person-centred care, derived from studies of volunteers or staff employed to provide activities, demonstrated meaningful engagement could reassure a person and improve their mood. Proactive approaches that anticipated distress were thought to reduce behaviours that carried a risk of harm but supporting evidence was lacking. Conclusion Non-registered staff are limited by organisational efforts to reduce risk, leading to a focus on containment. Trained staff who are supported during constant observation can connect with patients, provide comfort and potentially reduce behaviours that carry a risk of harm.

Background: Cancer and dementia are common in older people and management of the conditions as comorbidities can be challenging, yet little is known about the size or characteristics of this group. We aimed to estimate the prevalence, characteristics and general practice resource usage of people living with both conditions in England. Methods: Anonymised electronic healthcare records from 391 National Health Service general practices across England using the TPP SystmOne general practice system were obtained from ResearchOne. Data included demographic and clinical characteristics, and general practice healthcare useage (appointments, prescriptions, referrals and secondary care contacts) for people aged 50 and over with a cancer and/or dementia diagnosis consistent with the Quality and Outcomes Framework between 2005 and 2016. Multi-level negative binomial regression was used to analyse the number of general practice appointments. Results: Data from 162,371 people with cancer and/or dementia were analysed; 3,616 (2.2%) people were identified as having comorbid cancer and dementia. Of people with cancer, 3.1% also had dementia, rising to 7.5% (1 in 13 people) in those aged 75 and over. Fewer people with both conditions were female (50.7%) compared to those with dementia alone (65.6%) and those with comorbid cancer and dementia were older than those with cancer alone [mean ages 83 (sd=7), 69 (sd=12) respectively]. Those with both conditions were less likely to have lung cancer than those with cancer alone (7.5% vs. 10.3%) but more likely to have prostate cancer (20.9% vs. 15.8%). Additional comorbidities were more prevalent for those with both conditions than those with cancer or dementia alone (68.4% 54 vs. 50.2% vs. 54.0%). In the year following the first record of either condition, people with cancer and dementia had 9% more general practice appointments (IRR:1.09, 95% 56 CI:1.01-1.17) than those with cancer alone and 37% more appointments than those with dementia alone (IRR: 1.37, 95% CI: 1.28-1.47). Conclusions: A significant number of people are living with comorbid cancer and dementia in England. This group have additional comorbidity and higher general practice usage than those with cancer/dementia alone. The needs of this group should be considered in future general practice care planning and research.

This study explored intervention implementation within a pragmatic, cluster randomised controlled trial of Dementia Care MappingTM (DCM) in UK care homes. DCM is a practice development tool comprised of a five component cycle (staff briefing, mapping observations, data analysis and reporting, staff feedback, action planning) that supports delivery of person-centred care. Two staff from the 31 intervention care homes were trained in DCM and asked to deliver three cycles over a 15-month period, supported by a DCM expert during cycle 1. Implementation data were collected after each mapping cycle. There was considerable variability in DCM implementation fidelity, dose and reach. Not all homes trained two mappers on schedule and some found it difficult to retain mappers. Only 26% of homes completed more than one cycle. Future DCM trials in care home settings should consider additional methods to support intervention completion including intervention delivery being conducted with ongoing external support.

Objectives: Behaviours associated with agitation are common in people living with dementia. The Cohen-Mansfield Agitation Inventory (CMAI) is a 29-item scale widely used to assess agitation completed by a proxy (family carer or staff member). However, proxy informants introduce possible reporting bias when blinding to the treatment arm is not possible, and potential accuracy issues due to irregular contact between the proxy and the person with dementia over the reporting period. An observational measure completed by a blinded researcher may address these issues, but no agitation measures with comparable items exist. Design: Development and validation of an observational version of the CMAI (CMAI-O), to assess its validity as an alternative or complementary measure of agitation. Setting: Fifty care homes in England. Participants: Residents (N = 726) with dementia. Measurements: Two observational measures (CMAI-O and PAS) were completed by an independent researcher. Measures of agitation, functional status, and neuropsychiatric symptoms were completed with staff proxies. Results: The CMAI-O showed adequate internal consistency (α = .61), criterion validity with the PAS (r = .79, p = < .001), incremental validity in predicting quality of life beyond the Functional Assessment Staging of Alzheimer’s disease (β = 1.83, p < .001 at baseline) and discriminant validity from the Neuropsychiatric Inventory Apathy subscale (r = .004, p = .902). Conclusions: The CMAI-O is a promising research tool for independently measuring agitation in people with dementia in care homes. Its use alongside the CMAI could provide a more robust understanding of agitation amongst residents with dementia.

Dementia Care Mapping (DCM) is an observational tool set within a practice development process. Following training in the method, DCM is implemented via a cyclic process of briefing staff, conducting mapping observations, data analysis and report preparation, feedback to staff and action planning. Recent controlled studies of DCM’s efficacy have found heterogeneous results and variability in DCM implementation has been indicated as a potential contributing factor. This review aimed to examine the primary research evidence on the processes, barriers and facilitators to implementing DCM as a practice development method within formal dementia care settings. PUBMED, PsycINFO, CINAHL, The Cochrane Library-Cochrane reviews, HMIC (Ovid), Web of Science and Social Care Online were searched using the term “Dementia Care Mapping”. Inclusion criteria was primary research studies, in any formal dementia care settings where DCM was used as a practice development tool and which included discussion/critique of implementation processes. Assessment of study quality was conducted using the Mixed Methods Appraisal Tool (MMAT). Twelve papers were included in the review, representing nine research studies. The papers included discussion of various components of the DCM process including mapper selection and preparation; mapping observations; data analysis, report writing and feedback; and action planning. However, robust evidence on requirements for successful implementation of these components was limited. Barriers and facilitators to mapping were also discussed. The review found some consensus that DCM is more likely to be successfully implemented if the right people are selected to be trained as mappers, with appropriate mapper preparation and ongoing support, with effective leadership for DCM within the implementing organisation/unit and in organizations that already have a person-centred culture or ethos. Future development of the DCM tool should consider ways to save on time taken to conduct DCM cycles. More research to understand the ingredients for effective DCM implementation is needed.

Background: Behaviours such as agitation impact on the quality of life of care home residents with dementia and increase health care use. Interventions to prevent these behaviours have little evidence supporting their effectiveness or cost-effectiveness. We conducted an economic evaluation alongside a trial assessing Dementia Care Mapping™ (DCM) versus usual care for reducing agitation and highlight methodological challenges of conducting evaluations in this population and setting. Methods: RCT data over 16 months from English care home residents with dementia (intervention n = 418; control n = 308) were analysed. We conducted a cost-utility analysis from the healthcare provider perspective. We gathered resource use and utility (EQ-5D-5L and DEMQoL-Proxy-U) from people living with dementia and proxy informants (staff and relatives). Data were analysed using seemingly unrelated regression, accounting for care home clustering and bootstrapping used to capture sampling uncertainty. Results: Costs were higher in the intervention arm than control arm (incremental = £1,479) due in part to high cost outliers. There were small QALY gains (incremental = 0.024) in favour of DCM. The base case ICER (£64,380 per QALY) suggests DCM is not cost-effective versus usual care. With the exception of analyses excluding high cost outliers, which suggested a potential for DCM to be cost-effective, sensitivity analyses corroborated the base case findings. Bootstrapped estimates suggested DCM had a low probability (p<0.20 where λ=£20,000) of being cost-effective versus control. Conclusion: DCM does not appear to be a cost-effective intervention versus usual care in this group and setting. The evaluation highlighted several methodological challenges relating to validity of utility assessments, loss to follow-up and compliance. Further research is needed on handling high cost individuals and capturing utility in this group.

The positive role of PA for health and well being has been identified in the literature. At the present time there is no specific evidence based public health guidance which supports engagement in PA and reduction in sedentary behaviour to improve physical and psychological health for people who are currently living with dementia. This is problematic as activities and interventions may be ineffective in meeting the needs of people with dementia consequently there is a need to develop this guidance. A systematic literature review is currently being undertaken to investigate the current evidence regarding the benefits of being physically active and avoiding sedentary behaviour and the levels of PA required for greatest benefits. A formative assessment is planned which will include discussions with stakeholders to better understand the existing knowledge base and factors likely to influence engagement along with the key features required in the guidance to best meet the needs of people with dementia. Findings from these two pieces of work will inform development of the PA public health guidance. People living with dementia will be involved at all stages of this process and are integral to the development and subsequent implementation. This study is currently in its very early stages hence only the results from the systematic literature review will be available. Early indications of the range of potential health benefits of being physically active and avoiding sedentary behaviour for people currently living with dementia will be presented with an indication on what the evidence suggests as the potential recommendations about frequency, intensity, time and type of PA that is the most beneficial. The next stages of the study will also be presented and how people with dementia, carers and family members along with health and social care professionals can be involved in the development of the guidance.

Background: The health and social care workforce requires access to appropriate education and training to provide quality care for people with dementia. Success of a training programme depends on staff ability to put their learning into practice through behaviour change. This study aimed to investigate the barriers and facilitators to implementation of dementia education and training in health and social care services using the Theoretical Domains Framework (TDF) and COM-B model of behaviour change. Methods: A mixed-methods design. Participants were dementia training leads, training facilitators, managers and staff who had attended training who worked in UK care homes, acute hospitals, mental health services and primary care settings. Methods were an online audit of care and training providers, online survey of trained staff and individual/group interviews with organisational training leads, training facilitators, staff who had attended dementia training and managers. Data were analysed using descriptive statistics and thematic template analysis. Results: Barriers and facilitators were analysed according the COM-B domains. “Capability” factors were not perceived as a significant barrier to training implementation. Factors which supported staff capability included the use of interactive face-to-face training, and training that was relevant to their role. Factors that increased staff “motivation” included skilled facilitation of training, trainees’ desire to learn and the provision of incentives (e.g. attendance during paid working hours, badges/certifications). “Opportunity” factors were most prevalent with lack of resources (time, financial, staffing and environmental) being the biggest perceived barrier to training implementation. The presence or not of external support from families and internal factors such as the organisational culture and its supportiveness of good dementia care and training implementation were also influential. Conclusions: A wide range of factors may present as barriers to or facilitators of dementia training implementation and behaviour change for staff. These should be considered by health and social care providers in the context of dementia training design and delivery in order to maximise potential for implementation.

Background: The Neuropsychiatric Inventory is predicated on the assumption that psychiatric symptoms are manifestations of disease. Biopsychosocial theories suggest behavioural changes viewed as psychiatric may also arise as a result of external behavioural triggers. Knowing the causes of psychiatric is important since the treatment and management of psychiatric symptoms relies on this understanding. Aims: This study sought to understand the causes of psychiatric symptoms recorded in care home settings by investigating qualitatively described symptoms in NPI-NH interviews. Method: The current study examined the NPI-NH interviews of 725 participants across 50 care homes. The qualitatively described symptoms from each of the 12 subscales of the NPI were extracted: 347 interviews included at least one qualitatively described symptom (n=651 descriptions). A biopsychosocial algorithm developed following a process of independent researcher coding (n=3) was applied to the symptom descriptions. This determined whether the description had predominantly psychiatric features, or features that were cognitive or attributable to other causes (i.e. issues with Orientation & Memory, Expressions of Need, Poor Care and Communication or Understandable Reactions) Results: Our findings suggest that the majority (over 80%) of descriptions described symptoms with features that could be attributable to cognitive changes and external triggers (e.g. poor care and communication). Conclusions: The finding suggest that in its current form the NPI-NH may over attribute the incidence of psychiatric symptoms in care homes by overlooking triggers for behavioural changes. Measures of psychiatric symptoms should determine the causes of behavioural changes in order to guide treatments more effectively.

Background: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. Method: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). Results: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. Conclusion: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.

BACKGROUND: A growing number of people are living with comorbid dementia and cancer (CDC), and they are particularly likely to require support from family caregivers. Carers of people with CDC play a vital supportive role but have reported unmet support needs, including a lack of CDC-specific information resources and peer support. A targeted online peer support forum may provide an accessible way to help address unmet needs of carers of people with CDC. OBJECTIVE: This study aimed to explore the types and frequency of social support provided on an online peer support forum for caregivers of people with CDC, hosted by a dementia charity in the United Kingdom. METHODS: We conducted a mixed methods study using descriptive statistics and qualitative content analysis. All posts (N=893) on the forum since its launch in November 2018 to April 2024 were exported into Microsoft Excel for analysis. Descriptive statistics were used to examine forum use and user characteristics. Deductive content analysis was conducted to explore the types and frequency of social support provided on the forum. Posts were analyzed according to an adapted version of Cutrona and Suhr's Social Support Behavior Code, consisting of 5 main categories of support: informational, emotional, esteem, network, and tangible. Coding was completed independently by 2 coders, and any coding disagreements were resolved by reaching a consensus through discussion. RESULTS: A total of 258 usernames posted on the forum since its inception. There were 893 posts; 583 (65.3%) were coded as providing social support. All 5 Social Support Behavior Code categories were present in the forum posts. Informational support was the most common type of social support provided on the forum, which mostly involved providing suggestions for caregiving and coping strategies and sharing personal experiences that provide CDC-specific knowledge or insight. This was followed by emotional support, which consisted mostly of expressing shared understanding and empathy for caregivers in their unique situation of CDC and providing expressions of care for the recipient's well-being. Esteem, network, and tangible support were less common, though they included providing validation and relief of blame to other caregivers, typically in decision-making regarding cancer treatment; reminding caregivers that others were available on the forum for support; and expressing willingness to answer questions about their CDC caregiving experience. CONCLUSIONS: This study demonstrates the use and value of a CDC-specific online forum as a source of social support for carers of people with CDC, facilitating users' access to CDC-specific information and peer support. The relatively new forum shows promise as a free and accessible resource that can contribute to addressing carers' informational and peer support needs.

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.

Background: Family carers of people living with comorbid dementia and cancer (CDC) play a vital supportive role, but this may be particularly burdensome and adversely impact their own health and wellbeing. Objective: To examine the experiences and psychosocial support needs of caregivers of people with CDC. Methods: A flyer advertising the study was distributed to relevant UK voluntary sector organisations and shared across social media. 13 carers of people with CDC were recruited. In-depth semi-structured interviews were conducted and transcripts were analysed using reflexive thematic analysis, underpinned by an inductive phenomenological approach. Results: Complex interactions of dementia and cancer resulted in heightened responsibility for carers, who played a crucial role in recognition/management of symptoms, performing difficult cancer-related care, and treatment decision-making that posed difficult ethical challenges. Care-recipients had reduced insight into their cancer diagnosis and prognosis, so carers often carried the emotional burden alone. Responsibilities faced by carers were compounded by a lack of targeted, accessible information/support for CDC. Carers expressed a desire to talk to and learn from others who understand the unique challenges of navigating cancer-related decision-making, treatment and care for people who are also living with dementia. Conclusions: Cancer alongside dementia presents complex challenges for carers, who desire more cancer-related information and support which is tailored to people living with dementia and their family caregivers.

BACKGROUND: A growing number of people are living with comorbid dementia and cancer (CDC), and they are particularly likely to require support from family caregivers. Carers of people with CDC play a vital supportive role but have reported unmet support needs, including a lack of CDC-specific information resources and peer support. A targeted online peer support forum may provide an accessible way to help address unmet needs of carers of people with CDC. OBJECTIVE: This study aimed to explore the types and frequency of social support provided on an online peer support forum for caregivers of people with CDC, hosted by a dementia charity in the United Kingdom. METHODS: We conducted a mixed methods study using descriptive statistics and qualitative content analysis. All posts (N=893) on the forum since its launch in November 2018 to April 2024 were exported into Microsoft Excel for analysis. Descriptive statistics were used to examine forum use and user characteristics. Deductive content analysis was conducted to explore the types and frequency of social support provided on the forum. Posts were analyzed according to an adapted version of Cutrona and Suhr's Social Support Behavior Code, consisting of 5 main categories of support: informational, emotional, esteem, network, and tangible. Coding was completed independently by 2 coders, and any coding disagreements were resolved by reaching a consensus through discussion. RESULTS: A total of 258 usernames posted on the forum since its inception. There were 893 posts; 583 (65.3%) were coded as providing social support. All 5 Social Support Behavior Code categories were present in the forum posts. Informational support was the most common type of social support provided on the forum, which mostly involved providing suggestions for caregiving and coping strategies and sharing personal experiences that provide CDC-specific knowledge or insight. This was followed by emotional support, which consisted mostly of expressing shared understanding and empathy for caregivers in their unique situation of CDC and providing expressions of care for the recipient's well-being. Esteem, network, and tangible support were less common, though they included providing validation and relief of blame to other caregivers, typically in decision-making regarding cancer treatment; reminding caregivers that others were available on the forum for support; and expressing willingness to answer questions about their CDC caregiving experience. CONCLUSIONS: This study demonstrates the use and value of a CDC-specific online forum as a source of social support for carers of people with CDC, facilitating users' access to CDC-specific information and peer support. The relatively new forum shows promise as a free and accessible resource that can contribute to addressing carers' informational and peer support needs.

Background: Quality of care for people with dementia in care homes is of concern. Interventions that can improve care outcomes are required. Objective: To investigate the clinical and cost-effectiveness of Dementia Care MappingTM (DCM™) for reducing agitation, and improving care outcomes for people living with dementia in care homes, versus usual care. Design: A pragmatic, cluster randomised controlled trial with open-cohort design, follow-up at 6- and 16-months, integrated cost-effectiveness analysis and process evaluation. Clusters were not blinded to allocation. Primary endpoint was completed by staff-proxy and independent assessors. Setting: Stratified randomisation of 50 care homes to intervention/control on a 3:2 ratio by type, size, staff exposure to dementia training and recruiting hub. Participants: Fifty care homes were randomised (31 intervention, 19 control), with 726 residents recruited at baseline and a further 261 at 16-months. Care homes were eligible if they recruited a minimum of 10 residents, were not subject to improvement notices, had not used DCM™ in the previous 18-months and were not participating in conflicting research. Residents were eligible if they lived there permanently, had a formal diagnosis of dementia/score of 4+ on the Functional Assessment Staging of Alzheimer’s Disease, were proficient in English, not at end-of-life/permanently cared for in bed. All homes were audited on delivery of dementia and person-centred care awareness training. Those not reaching a minimum standard were provided training ahead of randomisation. Eighteen homes took part in the process evaluation. Intervention: Two staff from each intervention home were trained to use DCM™ and requested to carry out three DCM™ cycles; the first supported by an external expert. Main outcome measures: The primary outcome was agitation (Cohen-Mansfield Agitation Inventory) at 16-months. Secondary outcomes included resident behaviours and quality of life. Results: There were 675 residents in the final analysis (287 control, 388 intervention). There was no evidence of difference in agitation levels between arms. The adjusted mean difference in CMAI score was -2.11 points, lower in the intervention group than control (95% CI -4.66 to 0.44, p=0.104, adjusted ICC control=0, intervention 0.001). The sensitivity analyses results supported the primary analysis. No differences were detected in any of the secondary outcomes. The health economic analyses indicated DCM™ was not cost-effective. Intervention adherence was problematic; only 26% of homes completed more than their first DCM™ cycle. Impacts of and barriers and facilitators to DCM™ implementation were identified. Limitations: Primary completion of resident outcomes was by staff proxy due to self-report difficulties for residents with advanced dementia. Clusters were not blinded to allocation although supportive analyses suggested any reporting bias was not clinically important. Conclusions: There was no benefit of DCM™ over control on any outcomes. Implementation of DCM™ by care home staff was sub-optimal compared to protocol in the majority of homes. Future work: Alternative models of DCM™ implementation should be considered, which do not rely solely on leadership by care home staff. Trial registration: Current Controlled Trials ISRCTN82288852 Funding: This project was funded by the National Institute for Health Research Health Technology Assessment programme (project number 11/15/13).

Objective: Describe and synthesise existing published research on the experiences and support needs of informal caregivers of people with multimorbidity. Design: Scoping literature review. Primary database and secondary searches for qualitative and/or quantitative English-language research with an explicit focus on informal carers of people with multimorbidity (no date restrictions). Quality appraisal of included papers. Thematic analysis to identify key themes in the findings of included papers. Results: Thirty-four papers (reporting on 27 studies) were eligible for inclusion, the majority of which were rated good quality, and almost half of which were published from 2015 onwards. The review highlights common difficulties for informal carers of people with multiple chronic illnesses, including practical challenges related to managing multiple health care teams, appointments, medications and side effects, and psychosocial challenges including high levels of psychological symptomatology and reduced social connectedness. Current gaps in the literature include very few studies of interventions which may help support this caregiver group. Conclusion: Interest in this research area is burgeoning. Future work might fruitfully examine the potential benefits of audio-recorded health care consultations, and digitally-delivered psychosocial interventions such as online peer support forums, for supporting and enhancing the caring activities and wellbeing of this caregiver group.

Objectives: Despite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care. Materials and methods: An ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 hrs) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n=37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis. Results: Patients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient’s willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment. Conclusions: People with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.

Background: Prevalence of cancer and dementia are strongly related to age. In the UK, 70% of care home residents have dementia. By 2040, older people (aged 65+) will account for 77% of all people living with cancer. Residents with only one of these conditions may have complex care needs. Having comorbid cancer and dementia (CCD) is likely to bring further challenges. This is the first research project to examine the care and support needs of people with CCD living in residential care homes and areas for improvement. Aims: To explore: (1) The care and support needs of people with CCD living in residential care homes. (2) What constitutes good care for people with CCD, their family/supporters, and residential care home staff. (3) Potential barriers and facilitators to providing good care for people with CCD. Methods: (1) Literature review to examine implications for cancerrelated care for people with dementia living in residential care homes. (2) Interviews with 5‐10 men and women with CCD, their family members/ supporters, and residential care home staff. (3) Ethnographic observations of 5‐10 people with CCD to further explore barriers and facilitators to good care. Results: Emergent findings from the literature review will be presented, and their implications for supporting people with CCD living in residential care homes discussed. Conclusions: Findings from this study will help improve the care and support of people with CCD and will contribute to a wider programme of research exploring the cancer care needs of people with dementia across a variety of care settings.

A growing number of people live with cancer and dementia. Dementia creates a particular set of challenges in all aspects of cancer treatment and care, including diagnosis, decision-making, access to appointments, monitoring of signs and symptoms of cancer and side effects of cancer treatment, and management of self-care tasks. People with cancer and dementia often require extensive support from family carers, and those without family support face additional challenges. This article uses the emerging UK evidence base on cancer and dementia to discuss the challenges that arise when providing cancer treatment and care to people with dementia and their families, and to make research-based recommendations on how to improve service provision for that population.

Background: Many people with dementia live in care homes, where staff can struggle to meet their complex needs. Successful practice improvement interventions in these settings require strong managerial support, but little is known about how managers can support implementation in practice, or what factors support or hinder care home managers in providing this support. Using Dementia Care Mapping™ (DCM) as an example, this study explored how care home managers can support the implementation of complex interventions, and identified factors affecting their ability to provide this support. Methods: We undertook interviews with 48 staff members (managers and intervention leads) from care homes participating in the intervention arm of the DCM EPIC trial of DCM implementation. Results: Managerial support played a key role in facilitating the implementation of a complex intervention in care home settings. Managers could provide practical and financial support in many forms. However, managerial support and leadership approaches towards implementation were highly variable in practice, and implementation was easily de-stabilised by management changes or competing managerial priorities. How well managers understood, valued and engaged with the intervention, alongside the leadership style they adopted to support implementation, were key influences on implementation success. Conclusions: For care home managers to effectively support interventions they must fully understand the proposed intervention and its potential value. This is especially important during times of managerial or practice changes, when managers lack the skills required to effectively support implementation, or when the intervention is complex. It may be unfeasible to successfully implement new interventions during times of managerial or practice instability.

Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. Methods: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Results: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. Conclusions: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.

Background: Psychosocial interventions offer opportunities to improve care for people with dementia in care homes. However, implementation is often led by staff who are not well prepared for the role. Some interventions use external experts to support staff. However little is known about external expert, care home staff and manager perceptions of such support. This paper addresses this gap. Methods: Multi-methods study within a process evaluation of a cluster randomised controlled trial of Dementia Care MappingTM (DCM). Interviews were conducted with six external experts who also completed questionnaires, 17 care home managers and 25 care home staff responsible for DCM implementation. Data were analysed using descriptive statistics and template analysis. Results: Three themes were identified: the need for expert support, practicalities of support and broader impacts of providing support. Expert support was vital for successful DCM implementation, although the five-days provided was felt to be insufficient. Some homes felt the support was inflexible and did not consider their individual needs. Practical challenges of experts being located at a geographical distance from the care homes, limited when and how support was available. Experts gained knowledge they were able to then apply in delivering DCM training. Experts were not able to accurately predict which homes would be able to implement DCM independently in future cycles. Conclusions: An external expert may form a key component of successful implementation of psychosocial interventions in care home settings. Future research should explore optimal use of the expert role.

Abstract

Background: Managing multiple conditions is difficult for patients and their families, increasing complexity in care. Two of the most common long-term conditions, cancer and dementia, both disproportionately affect older adults. However, little is known about the needs and experiences of those living with both conditions, which could inform practice in the area. Objectives: This focused ethnographic study sought to understand how oncology services balance the unique and complex needs of these patients with those of the service more widely. Design: Focused ethnography. Setting: Two NHS trusts. Participants: Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Methods: Participant observation, informal conversations, semi-structured interviews, and medical notes review. Results: Improved satisfaction and outcomes of care were reported when staff were delivering person-centred care. Staff tried to balance the need for personalised and flexible support for individuals with dementia with managing targets and processes of cancer care and treatment. The importance of continuity of people, places, and processes was consistently highlighted. Conclusion: Navigating and managing the delicate balance between the needs of the individual and the needs of services more widely was difficult for both staff and patients. Improved awareness, identification and documentation of dementia would help to ensure that staff are aware of any specific patient needs. Consistency in staffing and appointment locations should develop familiarity and routine for people with dementia.

Background: Dementia Care Mapping™ (DCM) is a widely used, staff-led, psychosocial intervention to support the implementation of person-centred care. Efficacy evaluations in care homes have produced mixed outcomes, with implementation problems identified. Understanding the experiences of staff trained to lead DCM implementation is crucial to understanding implementation challenges, yet this has rarely been formally explored. This study aimed to examine the experiences of care home staff trained to lead DCM implementation, within a large cluster randomised controlled trial. Methods: Process evaluation including, semi-structured interviews with 27 trained mappers from 16 intervention allocated care homes. Data were analysed using template variant of thematic analysis. Results: Three main themes were identified 1) Preparedness to lead - While mappers overwhelmingly enjoyed DCM training, many did not have the personal attributes required to lead practice change and felt DCM training did not adequately equip them to implement it in practice. For many their expectations of the mapper role at recruitment contrasted with the reality once they began to attempt implementation; 2) Transferring knowledge into practice – Due to the complex nature of DCM, developing mastery required regular practice of DCM skills, which was difficult to achieve within available time and resources. Gaining engagement of and transferring learning to the wider staff team was challenging, with benefits of DCM largely limited to the mappers themselves, rather than realised at a care home level; and 3) Sustaining DCM - This required a perception of DCM as beneficial, allocation of adequate resources and support for the process which was often not able to be provided, for the mapper role to fit with the staff member’s usual duties and for DCM to fit with the home’s ethos and future plans for care. Conclusions: Many care homes may not have staff with the requisite skills to lead practice change using DCM, or the requisite staffing, resources or leadership support required for sustainable implementation. Adaptations to the DCM tool, process and training may be required to reduce its complexity and burden and increase chances of implementation success. Alternatively, models of implementation not reliant on care home staff may be required.

Background: Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods: Two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical-record review. Participants (N=58) were people with dementia and comorbid cancer (n=17), informal caregivers (n=22) and hospital staff (n=19). Ethnographically informed thematic analysis was conducted. Results: There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical-records; dementia training was limited; and time and resource pressures impeded the highly-individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care Conclusions: Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

Objectives: The risks of developing cancer and dementia increase as we age, however this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. Materials and methods: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 hrs) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n=37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. Results: People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia friendly hospital outpatient environments alongside the cognitive problems associated with dementia. Conclusions: Dementia impacts patients’ abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from hospital, alongside extending the ongoing efforts to develop ‘dementia friendly’ hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.

Background and objectives: People with dementia occupy around one quarter of general hospital beds, with concerns consistently raised about care quality. Improving workforce knowledge, skills and attitudes is a mechanism for addressing this. However little is known about effective ways of training healthcare staff about dementia. This study aimed to understand models of dementia training most likely to lead to improved practice and better care experiences for people with dementia, and to understand barriers and facilitators to implementation. Method: A collective case study was conducted in three National Health Service Acute Hospital Trusts in England. Multiple data sources were used including interviews with training leads/facilitators, ward managers and staff who had attended training; satisfaction surveys with patients with dementia and/or carers; and observations of care using Dementia Care Mapping. Results: Interactive face-to-face training designed for general hospital staff was valued. Simulation and experiential learning methods were felt to be beneficial by some staff and stressful and distressing by others. Skilled delivery by an experienced and enthusiastic facilitator was identified as important. Staff identified learning and practice changes made following their training. However, observations revealed not all staff had the knowledge, attitudes and skills needed to deliver good care. Patient and carer satisfaction with care was mixed. A major barrier to training implementation was lack of resources. Supportive managers, organisational culture and strong leadership were key facilitators. Conclusion: Dementia training can lead to improved care practices. There are a range of key barriers and facilitators to implementation that must be considered.

Background: Psychosocial person-centred interventions are considered best practice for addressing complex behaviours and care needs such as agitation and anxiety, and for improving the quality of life of people with dementia in care homes. Dementia Care Mapping (DCM™) is an established practice development tool and process aimed to help care home staff deliver more person-centred care. To date, few studies have evaluated the efficacy of DCM™ and have found mixed results. These results are suggested to be the outcome of intervention implementation, which may be impacted by a range of factors. This study reports the barriers and facilitators to DCM™ implementation in care homes found during the process evaluation conducted as part of a randomized controlled trial. Methods: Eighteen of the 31 DCM™ intervention care homes were recruited to participate in the embedded process evaluation. Semi-structured interviews were conducted with 83 participants, comprising care home managers, trained DCM™ users (mappers), expert external mappers, staff members, relatives, and residents. Results: Barriers and facilitators to DCM™ implementation were found at the mapper level (e.g. motivation and confidence), the DCM™ intervention level (e.g. understanding of DCM™) and the care home level (e.g. staffing issues, manager support). Further barriers caused by the burden of trial participation were also identified (e.g. additional paperwork). Conclusions: Implementing DCM™ is complex and a greater consideration of potential barriers and facilitators in planning future studies and in practice could help improve implementation. Trial Registation: Current Controlled Trials ISRCTN82288852, registered 16/01/2014

Background The quality of care for people with dementia in care homes is of concern. Interventions that can improve care outcomes are required. Objective To investigate the clinical effectiveness and cost-effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation and improving care outcomes for people living with dementia in care homes, versus usual care. Design A pragmatic, cluster randomised controlled trial with an open-cohort design, follow-up at 6 and 16 months, integrated cost-effectiveness analysis and process evaluation. Clusters were not blinded to allocation. The primary end point was completed by staff proxy and independent assessors. Setting Stratified randomisation of 50 care homes to the intervention and control groups on a 3 : 2 ratio by type, size, staff exposure to dementia training and recruiting hub. Participants Fifty care homes were randomised (intervention, n = 31; control, n = 19), with 726 residents recruited at baseline and a further 261 recruited after 16 months. Care homes were eligible if they recruited a minimum of 10 residents, were not subject to improvement notices, had not used DCM in the previous 18 months and were not participating in conflicting research. Residents were eligible if they lived there permanently, had a formal diagnosis of dementia or a score of 4+ on the Functional Assessment Staging Test of Alzheimer’s Disease, were proficient in English and were not terminally ill or permanently cared for in bed. All homes were audited on the delivery of dementia and person-centred care awareness training. Those not reaching a minimum standard were provided training ahead of randomisation. Eighteen homes took part in the process evaluation. Intervention Two staff members from each intervention home were trained to use DCM and were asked to carry out three DCM cycles; the first was supported by an external expert. Main outcome measures The primary outcome was agitation (Cohen-Mansfield Agitation Inventory), measured at 16 months. Secondary outcomes included resident behaviours and quality of life. Results There were 675 residents in the final analysis (intervention, n = 388; control, n = 287). There was no evidence of a difference in agitation levels between the treatment arms. The adjusted mean difference in Cohen-Mansfield Agitation Inventory score was –2.11 points, being lower in the intervention group than in the control (95% confidence interval –4.66 to 0.44; p = 0.104; adjusted intracluster correlation coefficient: control = 0, intervention = 0.001). The sensitivity analyses results supported the primary analysis. No differences were detected in any of the secondary outcomes. The health economic analyses indicated that DCM was not cost-effective. Intervention adherence was problematic; only 26% of homes completed more than their first DCM cycle. Impacts, barriers to and facilitators of DCM implementation were identified. Limitations The primary completion of resident outcomes was by staff proxy, owing to self-report difficulties for residents with advanced dementia. Clusters were not blinded to allocation, although supportive analyses suggested that any reporting bias was not clinically important. Conclusions There was no benefit of DCM over control for any outcomes. The implementation of DCM by care home staff was suboptimal compared with the protocol in the majority of homes. Future work Alternative models of DCM implementation should be considered that do not rely solely on leadership by care home staff. Trial registration Current Controlled Trials ISRCTN82288852. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 16. See the NIHR Journals Library website for further project information.

Objectives: Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population. Method: Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6- and 16-months and stratified randomisation to intervention (n=31) and control (n=19). Residents with dementia were recruited at baseline (n=726) and 16-months (n=261). Clusters were not blinded to allocation. Three DCM cycles were scheduled, delivered by two trained staff per home. Cycle one was supported by an external DCM expert. Agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16-months was the primary outcome. Results: DCM was not superior to control on any outcomes (cross-sectional sample n=675: 287 control, 388 intervention). The adjusted mean CMAI score difference was -2.11 points (95% CI -4.66 to 0.44, p = .104, adjusted ICC control=0, intervention 0.001). Sensitivity analyses supported the primary analysis. Incremental cost per unit improvement in CMAI and QALYs (intervention versus control) on closed-cohort baseline recruited sample (n=726, 418 intervention, 308 control) was £289 and £60,627 respectively. Loss to follow-up at 16-months in the original cohort was 312/726 (43·0%) mainly (87·2%) due to deaths. Intervention dose was low with only a quarter of homes completing more than one DCM cycle. Conclusion: No benefits of DCM were evidenced. Low intervention dose indicates standard care homes may be insufficiently resourced to implement DCM. Alternative models of implementation, or other approaches to reducing agitation should be considered. Trial registration: Current Controlled Trials ISRCTN82288852.

Within the UK adoption has become a highly politicised and racialised practice as successive governments have promoted adoption above other forms of permanence. The Children and Families Act, 2014, controversially removed the requirement that adoption agencies should ‘give due consideration to the child’s religious persuasion, racial origin and cultural and linguistic background’. Using Critical Race Theory and contemporary sociological discourses, this is the first study to examine how social workers have responded to this legislative reform, to examine if and how race matters within adoption. This qualitative study took place in a local authority and its associated adoption agency. Through the use of semi-structured interviews with nine children’s social workers, six adoption social workers, an agency decision-maker and a focus group with eight members of an adoption panel, this study examined the influence of race and ethnicity on adoption practice for children of mixed racial backgrounds. In providing a theoretical discussion of the construction of race and mixed race, this study examines how mixed race identities are conceptualised within social work assessments and how this informs decision-making and matching with prospective adopters. Through the application of critical race methodologies and thematic analysis, the findings suggested that three interrelated themes: Racial Literacy and Social Work; Race, Adoption and Ethical Literacy and Racially Literate Adoption Practice highlight the salience of race within adoption practice. The study found that despite the removal of the ethnicity clause, race continues to matter for mixed race children within English adoption practice, as many social workers demonstrated an ethical commitment to the significance of race for children’s adoptive identities. The study highlighted increased heterogeneity in categories of mixedness as participants sought to understand the complexity of children’s lived experiences. However, the study identified a lack of racial literacy within adoption practice, which was reflected by an inconsistency in how mixed race identities were represented in assessments and reports, and it was difficult to determine how race and ethnicity were considered in placement decisions. The study concluded that race does not need to be an explicit feature of discourse to remain an invisible presence and highlighted the potential of Critical Race Theory to understand racialisation within adoption policy and practice. The study offers recommendations regarding future research; adoption policy and practice, and social work education and training with the intention of improving the experiences of mixed race children who are seeking adoption. 

Background  Due to an ageing population, and the increasing prevalence of older adults living with comorbidities, a growing proportion of people are living with dementia and comorbid cancer (DCC) in nursing homes (NH). People with DCC are diagnosed at a later stage, receive less treatment, and have poorer survival. Very few studies, and none in the United Kingdom, have examined the care and support needs of people with DCC living in nursing homes (NH).  Aims  The aims of this thesis are: (1) what are the care and support needs of people with DCC living in NHs; (2) what are the barriers and facilitators to high-quality, person-centred care (PCC) for this resident group?; and (3) what are the target areas and outcomes for a future intervention to support and improve PCC for this group. Methods  Across five NHs I conducted: (1) interviews with 14 staff members and healthcare professionals, and 5 family caregivers; and (2) ethnographic observations (a) following the care experiences of 7 residents with DCC (approx. 90-hours over 10-months), and (b) broader NH observations (approx. 170-hours over 10-months). This research draws on aspects of the Cumulative Complexity Model (CCM) with an in-depth exploration of the Burden of Treatment (BOT) and Illness (BOI) placed on family caregivers, NH staff and residents with DCC.  Results  Four main themes were identified: (1) Complexity of decision-making– a collaboration of views from a resident’s care triad was crucial to determine the most appropriate care outcome for a resident; (2) Obstacles to accessing oncology services– generally, gaining an early cancer diagnosis is deemed both desirable and best practice in terms of its management. For most residents with severe dementia, physical and well-being factors showed receiving a diagnosis or treatment was not the most appropriate care route for this population; (3) Balancing delivery of dementia and cancer care – due to staffs’ incomplete knowledge about a resident’s cancer and how to manage this, their condition was often overlooked in care documentation and practice. Thus, a resident’s cancer was overshadowed by their dementia; (4) Consequences of dementia-orientated care for residents with cancer – if dementia-related care needs were prioritised, there was a higher risk of cancer symptoms being overlooked, inefficiently managed, or misattributed to a resident’s dementia.  Conclusion  Care and support inequalities are an identified risk for people with DCC in NHs for whom attending hospital to gain a formal cancer diagnosis is not feasible or in their best interests. This includes the risk of diagnostic overshadowing and heightened cancer-related symptoms that could lead to an emergency presentation. Recommendations for practice have included establishing ceilings of care with a resident’s care triad, outlining the logistics of accessing oncology services at the point of referral for residents that require hospital support, implementing areas in care plans to include a suspected diagnosis of cancer and related needs, utilise pain assessment tools to support cancer pain management, establish communication pathways with specialist palliative care teams and identify gaps in knowledge for nursing home staff to provide appropriate symptom management.