Conceptualising dementia crisis and preferences for resolution: A public perspective

Background: Crisis intervention services for people with dementia in the United Kingdom are poorly defined with no standardized model of working. This may be due to the lack of a clear conceptualization of dementia crisis, resulting in variation in national service delivery. Methods: This study employed a novel public engagement questionnaire data collection technique with 57 participants to gain an updated perspective on the concept of health-related crisis from the point of view of the public. Results: Analysis revealed crisis as a transformational moment that may arrive unexpectedly but could also be the culmination of a sequence of events. Crisis resolution requires external and expert help, and associated feelings of panic and despair can engender the task of resolution by oneself insurmountable. Conclusions: Participants had clear expectations of crisis intervention services, with initial practical and emotional support to reduce risks, and a person-centered approach with family involvement

A scoping review of crisis teams managing dementia in older people

Background: Research on crisis teams for older adults with dementia is limited. This scoping review aimed to 1) conduct a systematic literature review reporting on the effectiveness of crisis interventions for older people with dementia and 2) conduct a scoping survey with dementia crisis teams mapping services across England to understand operational procedures and identify what is currently occurring in practice. Methods: For the systematic literature review, included studies were graded using the Critical Appraisal Skills Programme checklist. For the scoping survey, Trusts across England were contacted and relevant services were identified that work with people with dementia experiencing a mental health crisis. Results: The systematic literature review demonstrated limited evidence in support of crisis teams reducing the rate of hospital admissions, and despite the increase in number of studies, methodological limitations remain. For the scoping review, only half (51.8%) of the teams had a care pathway to manage crises and the primary need for referral was behavioral or psychological factors. Conclusion: Evidence in the literature for the effectiveness of crisis teams for older adults with dementia remains limited. Being mainly cohort designs can make it difficult to evaluate the effectiveness of the intervention. In practice, it appears that the pathway for care managing crisis for people with dementia varies widely across services in England. There was a wide range of names given to the provision of teams managing crisis for people with dementia, which may reflect the differences in the setup and procedures of the service. To provide evidence on crisis intervention teams, a comprehensive protocol is required to deliver a standardized care pathway and measurable intervention as part of a large-scale evaluation of effectiveness

Dementia care model: promoting personhood through co-production

Background Despite robust evidence on its effectiveness, current approaches that aspire to person-centred care (PCC) frequently locate people with dementia as passive recipients rather than as active agents in the care process. We define active involvement in care as ‘co- production’. In order to investigate co-production, we set out to review the evidence concerning personhood and dignity in dementia care. Method We adopted a meta-ethnographic approach to synthesise the predominantly-qualitative literature on personhood and dignity in dementia care using EMBASE, PsycINFO, and ASSIA databases. We also included relevant policy documents. Members of Patient and 60 Public Involvement (PPI) group were consulted throughout. Results A total of 14 empirical studies were subjected to content analysis. Three themes were identified: dignity and personhood, coping with dementia, and barriers to dignity in care. The findings suggest that positive strategies and coping mechanisms are associated with superior outcomes in relation to: sense of self, dignity and quality of care. The 22 policy documents yielded six themes pertaining to co-production: the part played by the person with dementia, family, environment, behaviour, governance and law, and health care partnership. Conclusion Personhood in dementia care is enhanced through co-production, by actively participating in social, civic and political life. This is promoted through behavioural changes at the micro and macro levels of society, including providers of care being trained in co- producing care and policy makers creating opportunities with, rather than for people with dementia

AQUEDUCT intervention for crisis team quality and effectiveness in dementia: protocol for a feasibility study

Background: Specialist community teams often support people with dementia who experience crisis. These teams may vary in composition and models of practice, which presents challenges when evaluating their effectiveness. A best practice model for dementia crisis services could be used by teams to improve the quality and effectiveness of the care they deliver. Objective: The aim of this study is to examine the feasibility of conducting a large-scale randomized controlled trial comparing the AQUEDUCT (Achieving Quality and Effectiveness in Dementia Using Crisis Teams) Resource Kit intervention to treatment as usual. Methods: This is a multisite feasibility study in preparation for a future randomized controlled trial. Up to 54 people with dementia (and their carers) and 40 practitioners will be recruited from 4 geographically widespread teams managing crisis in dementia. Quantitative outcomes will be recorded at baseline and at discharge. This study will also involve a nested health economic substudy and qualitative research to examine participant experiences of the intervention and acceptability of research procedures. Results: Ethical approval for this study was granted in July 2019. Participant recruitment began in September 2019, and as of September 2020, all data collection has been completed. Results of this study will establish the acceptability of the intervention, recruitment rates, and will assess the feasibility and appropriateness of the outcome measures in preparation for a large-scale randomized controlled trial. Conclusions: There is a need to evaluate the effectiveness of crisis intervention teams for older people with dementia. This is the first study to test the feasibility of an evidence-based best practice model for teams managing crisis in dementia. The results of this study will assist in the planning and delivery of a large-scale randomized controlled trial. International Registered Report Identifier (IRRID): DERR1-10.2196/1897

Designing with and for people with dementia: developing a mindful interdisciplinary co-design methodology

This paper reports on the development of a mindful interdisciplinary design methodology in the context of the MinD project research into designing for and with people with dementia, which takes the particular focus on supporting the subjective well-being and self-empowerment of people with early to mid stage dementia in social context. Existing research is for the most part focussed on functional support and safe-keeping from the perspective of the carer. References to decision-making and empowerment are predominantly related to action planning for dementia care or advance care planning. References to care and social interaction show that caregivers tend to take a deficit-oriented perspective, and occupation of people with dementia is often associated with doing 'something' with little focus on the meaningfulness of the activity. Furthermore, caregivers and people with dementia tend to differ in their perspectives, e.g. on assistive devices, which might offer support. The MinD project, has therefore developed an interdisciplinary co-design methodology in which the voices to people with dementia contribute to better understanding and developing mindful design solutions that support people with dementia with regard to their the subjective well-being and self-empowerment a well as meaningful and equitable social engagement. This paper discussed the design methodological framework and methods developed for the data collection and design development phases of the project, and their rationale. It thus makes a contribution to interdisciplinary methodologies in the area of design for health

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit.

BACKGROUND: Improving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia. METHODS/DESIGN: It is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams' catchment area recorded 6 months after randomisation. Other outcomes include quality of life measures for people with dementia and their carers, practitioner impact measures, acute hospital admissions and costs. To enhance understanding of the Resource Kit intervention, qualitative work will explore staff, patient and carers' experience. DISCUSSION: The Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost-effective in this study, this will enhance the probability of its incorporation into mainstream practice. TRIAL REGISTRATION: ISRCTN 42855694 ; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 289982

Developing a model of best practice for teams managing crisis in people with dementia: A consensus approach

Background: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. Methods: The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). Results: 165 candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48-92/100. The median score for the crisis teams was 74.5 (range 67-92), and the median score for non-crisis teams was 60 (range 48-72).Conclusions: With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): A Study Protocol for a Randomised Controlled Trial of a Resource Kit.

BACKGROUNDImproving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia.METHODS/DESIGNIt is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams’ catchment area recorded six months after randomisation. Other outcomes include: quality of life measures for people with dementia and their carers; practitioner impact measures; acute hospital admissions; and costs. To enhance understanding of the resource kit intervention, qualitative work will explore staff, patient and carers’ experience.DISCUSSIONThe Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost effective in this study, this will enhance the probability of its incorporation into mainstream practice.TRIAL REGISTRATION: ISRCTN 42855694; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 28998

Narrative inquiry on case studies of crisis in dementia

PurposeThis study aims to explore the coping styles that can be inferred from the discourse of dyads with dementia, and how these appear to impact on care management.Design/methodology/approachThis was a case study approach. Participants were recruited from two teams managing crisis in dementia in the UK. The authors conducted multiple qualitative interviews with people with dementia and their family carers over the course of one month. The analysis was first performed through thematic analysis. Data were further analysed through narrative inquiry to create a story line, or play in our case, for our findings.FindingsFive dyads were interviewed and a total of 16 interviews were conducted. Three dyads were husband–wife and two were daughter–mother relationships. The mean age was 67.4 years for carers and 79.8 years for people with dementia. In these cases, the carer assumed responsibility for managing the episode and was more likely to seek formal help if a pre-existing plan was in place. Otherwise, when a crisis arose, dyads preferred to avoid involving professionals.Practical implicationsPsychosocial interventions should aim to identify and replace unhelpful strategies used by dyads to manage crisis episodes.Originality/valueTo the best of the authors’ knowledge, this is the first study using qualitative interviews of dyads to inquire into their experience of mental health crisis

Practitioners' Views on Enabling People With Dementia to Remain in Their Homes During and After Crisis.

Peer reviewed: TrueOne way of supporting people living with dementia is assisting them to live in their homes (as opposed to being admitted to hospital or other facility) and providing them with a specialist service that responds to crises. This makes it important to understand how best to organize such crisis response services. This study examines practitioners' actions to reduce inpatient admissions among this population. Through interviews with healthcare practitioners, we find that practitioners negotiate a complex intersection between (1) what constitutes a crisis in relation to the patient and/or the carer, (2) the demands of building a working relationship with both the patient and their family carers, and (3) ensuring effective communications with social services responsible for long-term community support. Findings suggest that policies aimed at reducing admissions should be based on a model of care that more closely maps practitioners' relational and bio-medical work in these services