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

One 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.

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.

Development of an Evidence-Based Best Practice Model for Teams Managing Crisis in Dementia: Protocol for a Qualitative Study.

BACKGROUND: Teams working in the community to manage crisis in dementia currently exist, but with widely varying models of practice, it is difficult to determine the effectiveness of such teams. OBJECTIVE: The aim of this study is to develop a "best practice model" for dementia services managing crisis, as well as a set of resources to help teams implement this model to measure and improve practice delivery. These will be the best practice tool and toolkit to be utilized by teams to improve the effectiveness of crisis teams working with older people with dementia and their caregivers. This paper describes the protocol for a prospective study using qualitative methods to establish an understanding of the current practice to develop a "best practice model." METHODS: Participants (people with dementia, caregivers, staff members, and stakeholders) from a variety of geographical areas, with a broad experience of crisis and noncrisis work, will be purposively selected to participate in qualitative approaches including interviews, focus groups, a consensus workshop, and development and field testing of both the best practice tool and toolkit. RESULTS: Data were collected between October 2016 and August 2018. Thematic analysis will be utilized to establish the current working of teams managing crisis in dementia in order to draw together elements of the best practice. CONCLUSIONS: This is the first study to systematically explore the requirements needed to fulfill effective and appropriate home management for people with dementia and their caregivers at the time of mental health crisis, as delivered by teams managing crisis in dementia. This systematic approach to development will support greater acceptability and validity of the best practice tool and toolkit and lay the foundation for a large scale trial with teams managing crisis in dementia across England to investigate the effects on practice and impact on service provision, as well as the associated experiences of people with dementia and their caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/14781.

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): DERR1-10.2196/18971.

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: One hundred sixty-five 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 to 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.

Involving the Person with Dementia in Crisis Planning: Focus Groups with Crisis Intervention Teams.

Dementia leads to progressive critical situations that can escalate to a crisis episode if not adequately managed. A crisis may also resolve spontaneously, or not resolve after receiving professional support. Because of the intensity of the crisis, the extent to which the person engages in decision making for their own care is often decreased. In UK mental health services, 'crisis teams' work to avert the breakdown of support arrangements and to avoid admissions to hospital or long-term care where possible. This study aimed to explore the views of crisis teams about promoting the involvement of the person with dementia in decision-making at all points in the care pathway, here defined as co-production. The staff of crisis teams from three NHS Trusts in the UK were interviewed through focus groups. Data were analysed using framework analysis. Three focus groups were run with 22 staff members. Data clustered around strategies used to promote the active involvement of the person with dementia, and the challenges experienced when delivering the care. Staff members reported that achieving a therapeutic relationship was fundamental to successful co-production. Miscommunication and/or lack of proper contact between the team and the individuals and carers receiving support adversely affected the quality of care. Making service users aware of the support provided by crisis teams before they need this may help promote a positive therapeutic relationship and effective care management.

Conceptualizing 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.

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 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.

The social construction of dementia: Systematic review and metacognitive model of enculturation.

BACKGROUND: The stigma associated with dementia may be influenced by how the condition has been socially constructed throughout history. OBJECTIVES: To conduct a systematic review tracing the historical representations of dementia, from the perspectives of cultural transmission theory and social constructivism. METHODS: A systematic search was run on five electronic databases: Wellcome Library, PsycINFO, CINAHL, IBSS, and EMBASE. Articles were screened and analysed through deductive content analysis. We further applied a communication system theory to graphically describe how dementia has been experienced through time. RESULTS: Ten primary sources and 33 secondary sources were consulted. Seven themes emerged from the analysis: a problem of aging; use it or lose it; divine punishment; loss of agency; psychosis and insanity; brain degeneration and objectification; and dementia as a social condition. Each theme corresponds to a particular way of conceptualising dementia and has influenced modern representations of the condition. CONCLUSION: Past characterisations of dementia have influenced modern views of the condition. It is through enculturation that these views are interpreted, assimilated, or rejected by individuals and transmitted within and across cultures. A better understanding of the social construction of dementia can improve public health approaches to rehabilitation and care.

Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis.

OBJECTIVES: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring. METHOD: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants. Two independent researchers conducted the quality appraisal of studies. We synthesise data through meta-ethnography and developed a behavioural model to explain dyadic interaction. RESULTS: Seventeen studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When people with dementia and their carers have dyadic-oriented goals, their behavioural responses may promote positive interaction. When only one partner has dyadic goals, context-related stress may affect the interaction, because of no perceived shared understanding of the situation. CONCLUSION: Our findings suggest that unequal power distribution within dyads, can cause significant stress, when coping strategies are impaired. We discussed implications for family carers, people with dementia, and health professionals deriving from greater understanding of dyadic dynamics to care.

Agency in dementia care: systematic review and meta-ethnography.

ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia. DESIGN: A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices. RESULTS: The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. CONCLUSIONS: Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.

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.