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Title: Developing a complex intervention to coordinate care for people with dementia
Author: Backhouse, Amy
ISNI:       0000 0004 7232 0513
Awarding Body: University of Exeter
Current Institution: University of Exeter
Date of Award: 2017
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The degenerative nature of dementia and its complexity of needs is becoming an increasing challenge to UK health and social care. Current care services have been reported as fragmented, providing poor quality of care and poor value for money. Coordinating interventions have shown a potential to improve outcomes for individuals living with dementia through the use of case managers who take responsibility for the provision of care through planning, facilitating and coordinating care. However, there is substantial variation across models including components, implementation methods and settings. The aim of this thesis was to explore these variations and develop a complex intervention to coordinate care for individuals living with dementia through a series of studies following the Medical Research Councils (MRC) framework. Two exploratory sequential systematic reviews were conducted to evaluate the evidence base for coordinating interventions in dementia. Firstly, thematic synthesis was conducted on data from seven papers from five independent studies evaluating qualitative evidence on the experience and perspectives of stakeholders and their views on key components of coordinating interventions. Synthesis identified five descriptive themes grouped from 32 codes: (1) Case Manager, (2) Communication, (3) Intervention, (4) Resources and (5) Support. The findings demonstrated stakeholders valued coordinating interventions in dementia care, and had clear preferences on the components, implementation methods and settings of interventions. The following systematic review synthesised evidence from 14 identified randomised controlled trials (RCTs) to evaluate the effectiveness of coordinating interventions and investigate associations between identified key components and intervention effects. Meta-analyses found individuals in coordinating interventions showed a significant improvement in caregiver burden and patient behaviour compared to individuals in usual care. Subgroup analyses found coordinating interventions using a case manager with a nursing background showed a greater positive effect on caregiver quality of life than those using case managers from other professions. Interventions that did not provide case managers with supervision showed a greater effectiveness of reducing rates of institutionalisation than interventions providing supervision. Evidence from the two systematic reviews were used to inform the development of a conceptual model of a coordinating intervention for dementia care. The conceptual model outlines the resources required for the intervention, intervention components including the activities and outputs required for each component, and the primary, intermediate and long-term outcomes of the interventions at a service user level and a system level. Following the modelling stage, a qualitative study was conducted using semi-structured interviews with 22 stakeholders including individuals with dementia, informal caregivers and a range of professionals from health care, social care and third sector organisation. Interviews were used to explore the perspectives and experiences of a range of stakeholders on the coordination of current services, and their views on the likely acceptability, utility and success of the conceptual model of care. Thematic analysis identified four overarching themes relating to stakeholder perspectives and experience of current care: (1) Societal Attitudes, (2) Care Conflict, (3) Disconnected Systems, and (4) Living Well with Dementia. A further three overarching themes were identified relating to stakeholders views on the conceptual model: (1) Barriers and Facilitators to Model Implementation, (2) Focus of the Intervention and Case Manager Role, and (3) Attributes of Case Manager. Both service users and professionals described a fractured system of care that they felt reflected existing discriminatory attitudes around dementia and the care of older adults. Participants felt a sense of hopelessness when it came to the treatment of dementia and a lack of accountability when it came to continued support. Many participants saw the value of having a case manager and felt the conceptual model for coordinating care could be effective for individuals living with dementia. However, stakeholders also identified potential barriers to implementation, namely funding, potential overlap with current services and roles, and workload of the case manager. The work in this thesis has identified a range of intervention components, implementation methods and settings of which stakeholders prefer, some of which have been proven to have associations with intervention effects. Incorporating these preferences into a conceptual model of a coordinating intervention in dementia care had a positive response with both service users and professionals who saw the model as a valuable tool in coordinating services, and a process that could fill a current gap in a fragmented care system.
Supervisor: Dickens, Chris ; Richards, David ; McCabe, Rose Sponsor: National Institute for Health Research (NIHR)
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available