A Core Outcome Set for Nonpharmacological Community-Based Interventions for People Living With Dementia at Home: A Systematic Review of Outcome Measurement Instruments.

BACKGROUND AND OBJECTIVES: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from more than 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review, we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. RESEARCH DESIGN AND METHODS: We extracted self-reported OMIs from trials, reviews, and reports of instrument development. Searches were undertaken in the ALOIS database, MEDLINE, PsycINFO, CINAHL, SocINDEX, and COSMIN databases. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency, and responsiveness. We held a coresearch workshop involving people living with dementia and care partners in order to ratify the findings. RESULTS: In total 347 OMIs were located from 354 sources. Of these, 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the core outcome set (COS) items, and no OMIs proceeded to further assessment. The "best" available OMI is the Engagement and Independence in Dementia Questionnaire. DISCUSSION AND IMPLICATIONS: This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.

Developing the evidence base for evaluating dementia training in NHS hospitals (DEMTRAIN): a mixed-methods study protocol.

INTRODUCTION: Around 70% of acute hospital beds in the UK are occupied by older people, approximately 40% of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. Limited research has been conducted to evaluate dementia training packages for staff, and evaluation of training often focuses on immediate, on-the-day training feedback and effects. OBJECTIVES: Our study aims to answer two research questions: (1) How do variations in content, implementation and intensity of staff dementia training in acute hospitals in England relate to health service outcome/process measures and staff outcomes? and (2) What components of staff dementia training are most strongly related to improved patient and staff outcomes? METHODS AND ANALYSIS: Using the principles of programme theory, a mixed-method study will be used to identify mechanisms and the interactions between them, as well as facilitators and barriers to dementia training in hospitals. We will use existing data, such as Hospital Episode Statistics, alongside two surveys (at hospital and staff level).We will recruit up to 193 acute hospitals in England to participate in the hospital level survey. We aim to recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. In addition, we will explore the cost-effectiveness of dementia training packages and carry out an in-depth case study of up to six hospitals. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee (FHMREC 17056) and Health Research Authority (Integrated Research Approval System (IRAS) ID 242166: REC reference 18/HRA/1198). We plan to develop both standard (eg, academic publications, presentations at conferences) and innovative (eg, citizen scientist web portals, online fora, links with hospitals and third sector organisations) means of ensuring the study findings are accessible and disseminated regionally, nationally and internationally.

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.

BACKGROUND: Recent recommendations promote the inclusion of people living with dementia beyond the role of 'participant' to involvement in all areas of the research process. This reflects shifts in dementia studies from 'research on' to 'research with' people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. METHODS: This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). RESULTS: A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into 'accessible statements' for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. CONCLUSIONS: Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. TRIAL REGISTRATION: The study is registered on the COMET Initiative .

'Getting to Know Me': The second phase roll-out of a staff training programme for supporting people with dementia in general hospitals.

Objectives The aims were to evaluate a second phase roll-out of a dementia care training programme for general hospital staff and to further develop two outcome scales: the Confidence in Dementia scale for measuring confidence in working with people with dementia and the Knowledge in Dementia scale for measuring knowledge in dementia. Method Following a 'training the trainers' phase, the study involved the delivery of the 'Getting to Know Me' training programme to a large number of staff (n = 517) across three National Health Service (NHS) Trusts situated in North-West England. The impact of the programme was evaluated using a pre-post design which explored: (i) changes in confidence in dementia, (ii) changes in knowledge in dementia, and (iii) changes in beliefs about behaviours that challenge. Results Statistically significant change was identified between pre-post training on all outcome measures (Confidence in Dementia: eight point increase, p < 0.001; Knowledge in Dementia: two point increase p < 0.001; controllability beliefs scale: four point decrease, p < 0.001). Medium to large effect sizes were demonstrated on all outcome measures. The psychometric properties of the Confidence in Dementia and Knowledge in Dementia scales are reported. Conclusion Staff knowledge in dementia and confidence in working with people with dementia significantly increased following attendance at the training sessions. The findings are consistent with preliminary findings and strengthen current knowledge about the impact of dementia care training in general hospitals. The Confidence in Dementia and Knowledge in Dementia scales continue to demonstrate psychometrically sound properties and demonstrate utility in the field of dementia research.

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

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

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

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

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

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

Lying in dementia care: an example of a culture that deceives in people's best interests.

OBJECTIVES: Deceiving, bending the truth and being dishonest are all terms used for the act of lying. The use of deception in health settings has a rich cross-cultural history. In relation to dementia care, first, Deceptive practices in managing a family member with Alzheimer's disease. Symbolic Interaction, 17(1), 21-36) distinguished between four kinds of lies used by staff: 'going along with a misperception', 'with-holding the truth', 'little white lies' and 'use of tricks'. This article examined the issue of deception, developing a questionnaire to investigate attitudes towards lying to people with dementia. Secondly, information on the use of lies was presented within a workshop to determine whether it would lead to attitude change. METHOD: This study used a two-phased design. The first phase involved developing a 16-item questionnaire. The second phase validated the use of the questionnaire through a workshop; therapists' responses to a teaching programme were assessed. RESULTS: The psychometric properties of the questionnaire are reported. Following the workshop, participants were found to have a more positive attitude towards the use of lies. The reasons underpinning changes in attitude are discussed. CONCLUSION: This study contributes to a more informed understanding regarding both the definition and use of lies. On the whole, participants developed a less generic perspective about lying, becoming more supportive of lies when used in specific situations in the best interests of the recipients.

Quetiapine and rivastigmine and cognitive decline in Alzheimer's disease: randomised double blind placebo controlled trial.

OBJECTIVES: To determine the respective efficacy of quetiapine and rivastigmine for agitation in people with dementia in institutional care and to evaluate these treatments with respect to change in cognitive performance. DESIGN: Randomised double blind (clinician, patient, outcomes assessor) placebo controlled trial. SETTING: Care facilities in the north east of England. PARTICIPANTS: 93 patients with Alzheimer's disease, dementia, and clinically significant agitation. INTERVENTION: Atypical antipsychotic (quetiapine), cholinesterase inhibitor (rivastigmine), or placebo (double dummy). MAIN OUTCOME MEASURES: Agitation (Cohen-Mansfield agitation inventory) and cognition (severe impairment battery) at baseline and at six weeks and 26 weeks. The primary outcome was agitation inventory at six weeks. RESULTS: 31 patients were randomised to each group, and 80 (86%) started treatment (25 rivastigmine, 26 quetiapine, 29 placebo), of whom 71 (89%) tolerated the maximum protocol dose (22 rivastigmine, 23 quetiapine, 26 placebo). Compared with placebo, neither group showed significant differences in improvement on the agitation inventory either at six weeks or 26 weeks. Fifty six patients scored > 10 on the severe impairment battery at baseline, 46 (82%) of whom were included in the analysis at six week follow up (14 rivastigmine, 14 quetiapine, 18 placebo). For quetiapine the change in severe impairment battery score from baseline was estimated as an average of -14.6 points (95% confidence interval -25.3 to -4.0) lower (that is, worse) than in the placebo group at six weeks (P = 0.009) and -15.4 points (-27.0 to -3.8) lower at 26 weeks (P = 0.01). The corresponding changes with rivastigmine were -3.5 points (-13.1 to 6.2) lower at six weeks (P = 0.5) and -7.5 points (-21.0 to 6.0) lower at 26 weeks (P = 0.3). CONCLUSIONS: Neither quetiapine nor rivastigmine are effective in the treatment of agitation in people with dementia in institutional care. Compared with placebo, quetiapine is associated with significantly greater cognitive decline.