Chatting: Family Carers' Perspectives on Receiving Support from Dementia Crisis Teams.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them.

Impact of involvement in mental health professional education on patient educators: a qualitative systematic review.

OBJECTIVES: Patient involvement in mental health professional education is required by policy but lacks a robust evidence base. The impact of involvement in education on patients with mental health conditions may differ from that of patients with other conditions. This study aims to review the impact of involvement in mental health professional education on the patients with mental health conditions involved. SETTING: Electronic databases MEDLINE, PubMed, AMED, EMBASE, PsycINFO, Emcare, BNI, HMIC and CINAHL were systematically searched to find articles reporting on health professional teaching interventions involving patients with mental health conditions and the psychological, social or physical impact of involvement. The search took place in August 2023. RESULTS: Findings from 20 articles were amalgamated into four synthesised findings: (1) Impact of general involvement (2) impact of making a difference through teaching, (3) impact of new relationships and (4) impact of talking about experiences. CONCLUSIONS: Patient involvement in mental health professional education can be beneficial for patients with mental health conditions when their experiences are respected and valued as expertise by students and academic staff. The experiences of patient educators in the mental health field are unique in that teaching activities interact with their mental health. Future research should evaluate patient involvement in the mental health field separately and report research findings according to reporting guidelines. PROSPERO REGISTRATION NUMBER: CRD42020224907.

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.

Power, recovery and doing something worthwhile: A thematic analysis of expert patient perspectives in psychiatry education.

BACKGROUND: Patient involvement in psychiatry education is required by policy and has many benefits for students. Little research has focused on the impact on expert patients (EPs). OBJECTIVE: This study aimed to explore the impact of involvement in psychiatry education on mental health patients. DESIGN: A qualitative descriptive study using semistructured interviews was conducted in a psychiatry teaching unit in the East Midlands, UK. A purposive sample of 20 EPs involved in teaching was interviewed about the social and psychological impacts of involvement. Transcripts were analysed thematically and a coding scheme was developed. RESULTS: Five themes were identified: shaping the doctors of the future-something worthwhile, challenging assumptions about mental health, recovery and transformation, vulnerability and support and expertise and power. CONCLUSION: These EPs benefitted from their experience of teaching. Involvement in psychiatry teaching may require putting oneself in a vulnerable position, but a supportive and open faculty team may mitigate this challenge. The Expert Patient Programme was seen as a way of helping to reduce the power difference between patients and doctors in the future. There is a need to examine the language that we use to talk about patient involvement as this may have implications for this power dynamic. The context and mechanisms that lead to the benefits described by participants should be studied so that these benefits may be generalized to other contexts. PATIENT CONTRIBUTION: An EP was involved in the planning and ethical approval application process of the project and the drafting and approval of this manuscript.

Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals.

BACKGROUND: Disclosing a diagnosis of dementia is a key process involving people with dementia, carers, and healthcare professionals (HCPs) that can facilitate access to treatment and support. Receiving a diagnosis of dementia may represent a change in identity and loss of a planned-for future, resulting in an emotional impact for both people with dementia and carers. Delivering the diagnosis of dementia can be difficult and draining for HCPs. METHODS: We conducted a systematic review that included studies which explored the experience of giving or receiving a diagnosis of dementia from the perspectives of people with dementia, carers, or HCPs. All study designs were eligible except for previous literature reviews. Findings were analyzed thematically and grouped into categories and then synthesized into a narrative review. The quality of all included studies was assessed. RESULTS: Fifty-two studies were included in this review. Findings indicated that receiving a diagnosis is generally a negative process for people with dementia, carers, and HCPs and leaves carers in particular feeling uncertain over the prognosis and future of the person they care for. Disclosing a diagnosis of dementia is a difficult and complex process, for which formal training and guidance is lacking. Carers in particular would welcome more opportunity for realistic and hopeful discussions of the implications of receiving a diagnosis of dementia. CONCLUSIONS: Changes in some aspects of disclosure, such as providing a truthful diagnosis to the person with dementia, have occurred over the last decade. A process approach involving pre-diagnostic counseling and follow-up appointments could enable discussions regarding prognosis and the future, create opportunities to clarify the diagnosis, and reduce emotional burden on HCPs. There is a need for more objective evidence that considers the perspectives of all individuals involved.

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.

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.

Effects of care assistant communication style on communicative behaviours of residents with dementia: a systematic multiple case study.

OBJECTIVES: To determine whether varying the communication style of care assistants, encouraging them to use direct instructions and allowing more time for residents' responses influenced the communicative behaviour of care home residents living with dementia. DESIGN: This study used a multiple systematic case study design. Participants were video-recorded during morning care routines in three communication conditions: usual communication, direct instructions and pacing (allowing more time for resident responses). Each dyad acted as its own control. SETTING: The study took place in a residential care home in the East Midlands, UK. PARTICIPANTS: Three dyads (person with dementia/care worker) MEASURES: The level of compliance with instructions was measured. Validated measures were used to rate positive communicative behaviour (engagement with care tasks, eye contact and initiation of interaction) and negative communicative behaviour (e.g. shouting and kicking). RESULTS: Care assistants were able to employ direct instructions after brief training. The use of direct instructions was positively correlated with positive communicative behaviour from residents (p < 0.05). The pacing condition was not employed adequately to evaluate effectiveness. Negative communicative behaviour (resistiveness to care) was rare. CONCLUSION: The use of direct instructions by care assistants holds promise for effective communication with people with dementia and warrants further investigation in larger samples and in varied contexts.

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.

The competencies of Registered Nurses working in care homes: a modified Delphi study.

Background: registered Nurses (RNs) working in UK care homes receive most of their training in acute hospitals. At present the role of care home nursing is underdeveloped and it is seen as a low status career. We describe here research to define core competencies for RNs working in UK care homes. Methods: a two-stage process was adopted. A systematic literature review and focus groups with stakeholders provided an initial list of competencies. The competency list was modified over three rounds of a Delphi process with a multi-disciplinary expert panel of 28 members. Results: twenty-two competencies entered the consensus process, all competencies were amended and six split. Thirty-one competencies were scored in round two, eight were agreed as essential, one competency was split into two. Twenty-four competencies were submitted for scoring in round three. In total, 22 competencies were agreed as essential for RNs working in care homes. A further 10 competencies did not reach consensus. Conclusion: the output of this study is an expert-consensus list of competencies for RNs working in care homes. This would be a firm basis on which to build a curriculum for this staff group.

The facilitators of communication with people with dementia in a care setting: an interview study with healthcare workers.

OBJECTIVES: to describe the views of healthcare workers on the facilitators of communication with people with dementia in a care setting. DESIGN: thematic analysis of semi-structured interviews. SETTING: all participants were interviewed in their place of work. PARTICIPANTS: sixteen healthcare workers whose daily work involves interacting with people with dementia. RESULTS: four overarching categories of themes were identified from the interviews that impact on communication: the attributes of a care worker, communication strategies used, organisational factors and the physical characteristics of the care environment. CONCLUSION: many strategies used by healthcare workers to facilitate communication have not yet been studied in the research literature. Participants' views on training should be incorporated into future dementia training programmes.