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

Importance of personal and professional experience for hospital staff in person-centred dementia care: a cross-sectional interview study using freelisting in a UK hospital ward

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. Objective To detail how hospital staff with differing personal and professional caregiving experiences approach the care of patients with dementia, in order to make practical recommendations for practice. Design Cross-sectional qualitative interviews. Setting A UK hospital ward providing dementia care. Participants A complete hospital ward staff team, constituting 47 hospital staff from 10 professions. Methods Hospital staff were asked to list their approaches to emotion-focused care in individual, ethnographic freelisting interviews. Cultural consensus analysis was used to detail variations in approaches to dementia care between staff subgroups. Main outcome measures The most salient listed descriptions of care emphasised by staff members with personal experience of dementia caregiving when compared with staff members without such experience, and descriptions from staff newer to the profession compared with staff with more years of professional dementia caregiving experience. Results Subgroups of hospital staff showed different patterns of responses both in how they noticed the emotional distress of patients with dementia, and in prioritised responses that they deemed to work. Hospital staff with professional experience of dementia caregiving and staff with fewer years of professional experience prioritised mutual communication and getting to know each patient. Conclusions Subgroups of hospital staff with personal caregiving experiences and fewer years of professional care experience were more likely to describe person-centred care as their routine ways of working with patients with dementia. It is recommended that personal experience and the novice curiosity of hospital staff be considered as valuable resources that exist within multidisciplinary staff teams that could enhance staff training to improve the hospital care for patients with dementia

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

Improving emotional well-being for hospital-based patients with dementia

Purpose: Improving hospital care for people with dementia is a well-established priority. There is limited research evidence to guide nursing staff in delivering person-centred care, particularly under conditions where patients are emotionally distressed. Misunderstood distress has negative implications for patient wellbeing and hospital resources. The purpose of this study is to use the expertise of nurses to recommend ways to care for the emotional wellbeing of patients with dementia that are achievable within the current hospital setting. Approach: A qualitative study was conducted in two long-stay wards providing dementia care in a UK hospital. Nursing staff (n=12) were asked about facilitators and barriers to providing emotion-focused care. Data were analysed using thematic analysis. Findings: Nursing staff said that resources existed within the ward team, including ways to gather and present personal information about patients, share multidisciplinary and personal approaches, work around routine hospital tasks and agree an ethos of being connected with patients in their experience. Staff said these did not incur financial cost and did not depend upon staffing numbers but did take an emotional toll. Examples are given within each of these broader themes. Implications: The outcome is a short-list of recommended staff actions that hospital staff say could improve the emotional wellbeing of people with dementia when in hospital. These support and develop previous research.Originality: In this paper, frontline nurses describe ways to improve person-centred hospital care for people with dementia

Meeting the emotional needs of hospital patients with dementia: a freelisting study with ward staff

Background and Objectives: People with dementia are vulnerable when in hospital, with serious risks to their physical and emotional wellbeing. Hospital staff are expected to understand and respond to the emotions of the patient; however, it is not known how this can be achieved. We provide a concise description of achievable emotion-focused care for patients with dementia. Design and Methods: Exploratory qualitative interviews were conducted with a whole UK hospital ward providing dementia care, constituting 47 staff members. Staff responded to four questions using ethnographic freelisting. They listed: (1) all the ways they notice the emotional distress of patients with dementia, (2) the causes of emotional distress, (3) all the ways they respond and (4) the responses that seem to work. Cultural consensus analysis was applied. Results: A single-factor solution for each question indicated a consensus approach to emotional distress. Emotional distress was noticed from agitation (Smith’s saliency score, 0.418), crying (0.350) and increased mobilising (0.238). The main causes of distress were the unfamiliar hospital environment (0.355) and not knowing what is happening (0.313). The most effective ways to respond to emotional distress required knowing the person (0.299), talking (0.283) and being with the person (0.269). Discussion and Implications: The findings expand what is understood of behavioural and psychological symptoms of dementia; these communicated emotional distress with well-understood causes. Prioritised ways of responding to emotional distress described person-centred care. The results offer a menu of options for providing emotionally-responsive care for patients with dementia in hospital. Future research should evaluate the care described

Where is the happiness in dementia?

Our current research aims to explore how the emotional experiences of individuals with dementia are understood, and to improve the design and delivery of care interventions. A preliminary, incidental, finding from our initial systematic literature search is reported here. Increasingly, the experience of dementia is understood from the viewpoint of the individual. However, this is not reflected in the body of research literature, which is predominantly orientated towards detailing the neuropsychiatric symptoms of mood, cognition, behaviour or physiology and ‘managing’ the condition

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