Browsing by Author "Robinson, Louise"

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    Effectiveness of different post-diagnostic dementia care models delivered by primary care: a systematic review
    (Royal College of General Practitioners, 2020-05-28) Frost, Rachael; Walters, Kate; Aw, Su; Brunskill, Greta; Wilcock, Jane; Robinson, Louise; Knapp, Martin; Harrison Dening, Karen; Allan, Louise; Manthorpe, Jill; Rait, Greta
    Background Global policy recommendations suggest a task-shifted model of post-diagnostic dementia care, moving towards primary and community-based care. It is unclear how this may best be delivered. Aim To assess the effectiveness and cost-effectiveness of primary care-based models of post-diagnostic dementia care. Design and setting A systematic review of trials and economic evaluations of post-diagnostic dementia care interventions where primary care was substantially involved in care plan decision making. Method Searches were undertaken of MEDLINE, PsychINFO, EMBASE, Web of Science, and CINAHL (from inception to March 2019). Two authors independently critically appraised studies and inductively classified interventions into types of care models. Random effects meta-analysis or narrative synthesis was conducted for each model where appropriate. Results From 4506 unique references and 357 full texts, 23 papers were included from 10 trials of nine interventions, delivered in four countries. Four types of care models were identified. Primary care provider (PCP)-led care (n = 1) led to better caregiver mental health and reduced hospital and memory clinic costs compared with memory clinics. PCP-led care with specialist consulting support (n = 2) did not have additional effects on clinical outcomes or costs over usual primary care. PCP–case management partnership models (n = 6) offered the most promise, with impact on neuropsychiatric symptoms, caregiver burden, distress and mastery, and healthcare costs. Integrated primary care memory clinics (n = 1) had limited evidence for improved quality of life and cost-effectiveness compared with memory clinics. Conclusion Partnership models may impact on some clinical outcomes and healthcare costs. More rigorous evaluation of promising primary care-led care models is needed.
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    Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice
    (Oxford University Press, 2021-07-06) Wheatley, Alison; Bamford, Claire; Brunskill, Greta; Booi, Laura; Harrison Dening, Karen; Robinson, Louise
    Background: inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families. Objective: to explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice. Design: qualitative semi-structured interviews, focus groups and observation. Settings: Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England. Participants: Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers. Results: barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning. Conclusion: a range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended.
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    Supporting good quality, community-based end-of-life care for people living with dementia: the SEED research programme including feasibility RCT
    (NIHR Journals Library, 2020-10) Robinson, Louise; Poole, Marie; McLellan, Emma; Lee, Richard; Amador, Sarah; Nawaraj, Bhattarai; Bryant, Andrew; Coe, Dorothy; Corbett, Anne; Exley, Catherine; Goodman, Claire; Gotts, Zoe; Harrison Dening, Karen; Hill, Sarah; Howel, Denise; Hrisos, Susan; Hughes, Julian; Kernohan, Ashleigh; Macdonald, Alastair; Mason, Helen; Massey, Christopher; Neves, Sandra; Paes, Paul; Rennie, Katherine; Rice, Stephen; Robinson, Tomos; Sampson, Elizabeth; Tucker, Susan; Tzelis, Dimitrios; Vale, Luke; Bamford, Claire
    Background In the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer. Objective The overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families. Design The Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (n = 20). Setting The workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care. Results Currently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public. Limitations The biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems. Conclusions Although the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level. Future work There is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently.
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    Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences
    (BMJ, 2020-09-21) Wheatley, Alison; Bamford, Claire; Brunskill, Greta; Harrison Dening, Karen; Allan, Louise; Rait, Greta; Robinson, Louise
    Objectives To explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia. Design Qualitative semi-structured telephone interviews and a focus group. Setting Participants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary care, secondary mental healthcare, social care and the third sector. All participants were based in England or Wales. Participants 61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff. Results Participants had varied views on whether a primary care-based approach for postdiagnostic support for people with dementia and their families was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and a more holistic approach to care; familiarity for both patients and staff; and reduction of stigma. Key challenges included the capacity, ability and inclination of primary care to deliver postdiagnostic support for people with dementia and their families. We discovered a number of conceptual challenges to implementing a task-shifted and task-shared approach, including uncertainties around the nature of postdiagnostic support, the definition of primary care and identification of tasks that could be shifted to primary care. Conclusions Our data highlight the concerns of key professional staff around greater involvement of primary care in postdiagnostic support for dementia. Further research is needed to achieve a shared understanding and consensus over what postdiagnostic support means in the context of dementia. We will be undertaking such research in the next phase of our programme.