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.

The Barts Explanatory Model Inventory for Dementia: An item reduction approach based on responses from South Asian communities.

BACKGROUND: Cultural differences in how the symptoms, causes, consequences, and treatments of dementia are understood and interpreted by South Asian people are a commonly expressed reason for late- or nonuse of mental health and care services. However, systematic collection of information on South Asian perceptions of dementia is hindered by a lack of appropriate instrumentation. OBJECTIVES: To produce a shortened version of the Barts Explanatory Model Inventory for Dementia (BEMI-D) schedule. METHODS: A two stage item reduction approach was employed first using multidimensional scaling categorizing items as core, intermediate, or outlier. Then, item review was undertaken using three criteria: literature importance, clinical face validity, and sub-group prevalence. The analysis followed a nonmetric multidimensional scaling method based on a two-way proximity matrix. RESULTS: The original BEMI-D had 197 items allocated to four checklists: symptoms, causes, consequences, and treatments. The two stage item reduction approach resulted in the removal of 75 items. These reductions were achieved across all four checklists in relatively equal proportions. There was no evidence of substantive content loss in the revised schedule. The reduced version of the schedule comprises 122 items. CONCLUSIONS: A condensed version of the BEMI-D is more efficient as an assessment schedule that captures the culturally diverse perceptions of memory problems for South Asians offering a balanced trade-off between feasibility of use and content validity.

Age, memory loss and perceptions of dementia in South Asian ethnic minorities.

BACKGROUND: South Asian older adults are represented less frequently in mainstream mental health services or those for people with dementia. This study aimed to explore in detail the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems, as these influence help-seeking behaviour. METHODS: Participants were allocated to three groups: younger adults; older adults; and older adults with subjective memory problems. They completed the semi-structured Barts Explanatory Model Inventory for Dementia schedule, whilst older adults also completed measures of cognition (MMSE), and depression (GDS). Interviews were conducted in English, Gujarati or Urdu. RESULTS: Groups were similar in identifying unusual forgetting and confusion as the most frequent symptoms; stress and age as the most frequent causes; and talking to your GP/nurse, taking medication, and talking to family and friends as the most frequent treatments. Younger adults more often knew about risk factors and reported practical consequences more than older adults. Older adults with subjective memory problems were more likely to describe sleep related problems or symptoms commonly associated with depression. They more often cited as causes of dementia lack of sleep, side effects of medication and medical reasons, and mentioned religion as a means to cope. CONCLUSIONS: Findings highlight variability in perceptions of dementia across the South Asian Community and identify specific areas where dementia awareness could be raised in South Asian sub-groups to improve timely diagnosis, treatment outcomes and service access.

Measuring the patient experience in community mental health services for older people: A study of the Net Promoter Score using the Friends and Family Test in England.

OBJECTIVES: The research aimed to explore the value of the Net Promoter Score as a service improvement tool and an outcome measure. The study objectives were to (1) explore associations between the Net Promoter Score with patient and service-receipt characteristics; (2) evaluate the strength of association between the Net Promoter Score and a satisfaction score; and (3) evaluate its test-retest reliability. METHODS: A postal survey was sent to service users on caseloads of community mental health teams for older people in four localities of England. The survey collected the Net Promoter Score, a single satisfaction question, and data on socio-demographics, clinical profile, and service receipt. Analysis used non-parametric tests of association and exploratory least squares regression. A second survey was administered for test-retest reliability analysis. Fieldwork concluded in April 2016. RESULTS: For 352 respondents, the Net Promoter Score was negatively related to age and was lowest for those still within 6 months of their initial referral. Receiving support from a psychiatrist and/or support worker was linked to higher scores. A strong but imperfect correlation coefficient with the satisfaction score indicates they evaluate related but distinct constructs. It had a reasonable test-retest reliability, with a weighted kappa of 0.706. CONCLUSIONS: Despite doubts over its validity in community mental health services, the Net Promoter Score may produce results of value to researchers, clinicians, service commissioners, and managers, if part of wider data collection. However, multi-item measures would provide greater breadth and improved reliability.

Community mental health teams for older people in England: Variations in ways of working.

OBJECTIVE: Integrated community mental health teams (CMHTs) are a key component of specialist old age psychiatry services internationally. However, in England, significant shifts in policy, including a focus on dementia and age inclusive services, have influenced provision. This study portrays teams in 2009 against which subsequent service provision may be compared. METHODS: A bespoke national postal survey of CMHT managers collected data on teams' structure, composition, organisation, working practices, case management, and liaison activities. RESULTS: A total of 376 CMHTs (88%) responded. Teams comprised a widespread of disciplines. However, just 28% contained the full complement of professionals recommended by government policy. Over 93% of teams had a single point of access, but some GPs bypassed this, and 40% of teams did not accept direct referrals from care homes. Initial assessments were undertaken by multiple disciplines, and 71% of teams used common assessment documentation. Nevertheless, many social workers maintained both NHS and local authority records. In 92% of teams, nominated care coordinators oversaw the support provided by other team members. However, inter-agency care coordination was less prevalent. Few teams offered the range of outreach/liaison activities anticipated in the national dementia strategy. CONCLUSIONS: Compared with previous studies, teams had grown and changed, with a clear increase in non-medical practitioners, particularly support workers. Measures to facilitate integrated care within CMHTs (eg, common access and documentation) were widespread, but integration across health and social care/primary and secondary services was less developed. Consideration of barriers to further integration, and the impact of current reforms is potentially fruitful.

Adaptation of the Barts Explanatory Model Inventory to dementia understanding in South Asian ethnic minorities.

OBJECTIVE: Studies indicate a limited understanding of dementia and its associated symptoms, causes and consequences among South Asian older adults. As a consequence, fewer people from this ethnic group receive a diagnosis of dementia. The aim of this study was to adapt the previously designed Barts Explanatory Model Inventory Checklist (BEMI-C), a tool designed to elicit perceptions of mental illness from people with different cultural backgrounds, for use with people with dementia in the South Asian population. METHOD: Both a literature review and 25 qualitative interviews were conducted to find themes and perceptions that are relevant to the South Asian culture in recognising and dealing with symptoms of dementia. The emergent themes and perceptions were then added to the BEMI-C through synthesis of findings. RESULTS: The initial four checklists of symptoms, causes, consequences and treatments from the BEMI-C were retained in the new BEMI-Dementia (BEMI-D) and expanded with six additional themes, including 123 new perceptions relevant to the understanding of dementia. All new themes emerged from the qualitative interviews, some of which were also found in the literature. CONCLUSION: Given the national priority of improving dementia awareness and timely diagnosis, the BEMI-D can serve as a useful tool, in research and perhaps practice, to assess the barriers to dementia service uptake in this population and their understandings of dementia. Based on the detailed methodological description of the adaptation of the BEMI-C, this paper further suggests how this tool can be adapted to suit other ethnic minority groups.

Perceptions of self-defined memory problems vary in south Asian minority older people who consult a GP and those who do not: a mixed-method pilot study.

OBJECTIVE: South Asian older adults access services for mental health problems and dementia less than other older people in the UK, unlike for physical health problems. This pilot study investigated how South Asians with self-defined memory problems, with and without GP consultation, construe the symptoms, causes, consequences and treatment of the condition. METHODS: Participants were recruited through community centres, their networks and memory clinics in Greater Manchester. The newly developed Barts Explanatory Model Inventory for Dementia (BEMI-D) was administered to 33 (18 M, 15 F) older South Asians aged 65 or above with memory problems in English, Gujarati or Urdu. Furthermore, cognition, executive function and depression were assessed. RESULTS: Perceptions of dementia varied by GP consultation for memory problems. A greater proportion of older adults without a consultation considered memory problems to be given by God, saw acceptance of fate as an alternative treatment and did not identify medical support as appropriate. Forgetfulness and loss of social meaning were identified as symptoms of dementia more by those with a consultation. Higher levels of diabetes, heart disease and depression were found in those without a consultation. CONCLUSIONS: Differences in perceptions may influence the decision about consulting a GP. Similarly, consultation for memory problems appears linked to extent physical health problems and mental health consultation (depression). These variations reported on a small scale in this pilot study suggest the need to explore the impact of perceptions on rates of GP consultation, so as to improve timely diagnosis and access to appropriate services.

South Asian older adults with memory impairment: improving assessment and access to dementia care.

OBJECTIVE: With increasing international migration, mental health care of migrants and ethnic minorities is a public health priority. South Asian older adults experience difficulties in accessing services for memory impairment, dementia and mental illness. This review examines barriers and facilitators in the pathway to culturally appropriate mental health care. METHODS: Web of Knowledge, Pubmed and Ovid databases were searched for literature on South Asian older adults or their family carers, their understandings of mental illness and dementia and their pattern of service use. Dates were from 1984 to 2012. Abstracts were assessed for relevance, followed by detailed reading of salient papers. Three researchers rated the quality of each included study. A narrative synthesis was undertaken of extracted and charted data. RESULTS: Eighteen studies met the eligibility criteria for the review. South Asians and health professionals highlighted several difficulties which deterred help seeking and access to care: a lack of knowledge of dementia and mental illness, and of local services; stigma; culturally preferred coping strategies; and linguistic and cultural barriers in communication and decision making. CONCLUSIONS: To improve access for these groups, service users and providers need to be better informed; services need to be more culturally tailored, sometimes employing staff with similar cultural backgrounds; and health professionals can benefit from dementia education and knowledge of local services. These factors are key to the delivery of the National Dementia Strategy in England.