Browsing by Author "Harrison Dening, Karen"
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Item Open Access Access to specialist palliative care to manage pain in people dying at home: give them a VOICE(BMJ, 2019-07-10) Harrison Dening, KarenCommentary only. Implications for practice and research ► People who receive specialist palliative care or have a stated preference to die at home have a significantly higher chance of experiencing good pain relief as they die, irrespective of their disease aetiology. ► People dying with cancer receive better pain relief than those dying of non-cancer disease. ► Access to specialist palliative care services and advance care planning should be available to all; irrespective of diagnosis. ► Researchers and policymakers should consider how to ensure improvements in pain management for patients at home through advice and support from community specialist palliative care services.Item Open Access Admiral Nursing case management in Enhanced Healthcare in Care Homes(Lidsen Publishing, 2021-04-21) Harrison Dening, Karen; Aldridge, ZenaThe United Kingdom’s (UK) older population is higher than the global average. Over the next 20 years, England will see an increase in the number of older people who have higher levels of dependency, dementia, and comorbidity many of whom may require 24-hour care. Currently it is estimated that 70% of residents in nursing and residential care homes either have dementia on admission or develop it whilst residing in the care home. The provision of high-quality care for this population is a challenge with a lack of consistency in the provision of primary care and specialist services and a known gap in knowledge and skills. The NHS Long Term Plan aims to move care closer to home and improve out of hospital care which includes people who live in care homes by introducing Enhanced Health in Care Homes (EHCH). However, such services need to be equipped with the correct skill mix to meet the needs of the care home population. Admiral Nurses are specialists in dementia care and are well placed to support the delivery of EHCH and improve access to specialist support to care home residents, their families, care home staff and the wider health and social care system. This paper discusses current gaps in service provision and how both the EHCH framework, and the inclusion of Admiral Nurses, might redress these and improve outcomes.Item Open Access Admiral Nursing—A Model of Specialist Dementia Care in Acute Hospitals(Sage, 2020-09-02) Aldridge, Zena; Oliver, Emily; Gardener, Hannah; Harrison Dening, KarenIntroduction: The rising prevalence of dementia has led to increased numbers of people with dementia being admitted to acute hospitals. This demand is set to continue due to an increasingly older population who are likely to have higher levels of dependency, dementia, and comorbidity. If admitted to the hospital, people with dementia are at higher risk of poor outcomes during and following a hospital admission. Yet, there remains a significant lack of specialist support within acute hospitals to support people with dementia, their families and hospital staff. Methods: Admiral Nurses are specialists that work with families affected by dementia and provide consultancy and support to health and social care colleagues to improve the delivery of evidenced based dementia care. Historically, Admiral Nurses have predominantly been based in community settings. In response to the increasing fragmentation of services across the dementia trajectory, the Admiral Nurse model is evolving and adapting to meet the complex needs of families impacted upon by dementia inclusive of acute hospital care. Results: The Admiral Nurse acute hospital model provides specialist interventions which improve staff confidence and competence and enables positive change by improving skills and knowledge in the provision of person-centred dementia care. The role has the capacity to address some of the barriers to delivering person centred dementia care in the acute hospital and contribute to improvements across the hospital both as a result of direct interventions or influencing the practice of others. Conclusion: Improving services for people with dementia and their families requires a whole system approach to enable care coordination and service integration, this must include acute hospital care. The increasing numbers of people with dementia in hospitals, and the detrimental effects of admission, make providing equitable, consistent, safe, quality care and support to people with dementia and their families a national priority requiring immediate investment. The inclusion of Admiral Nursing within acute hospital services supports service and quality improvement which positively impacts upon the experience and outcomes for families affected by dementia.Item Open Access A decision aid to support family carers of people living with dementia towards the end of life: Co-production process, outcome and reflections(Wiley, 2021-07-19) Davies, Nathan; Sampson, Elizabeth; West, Emily; DeSouza, Tanisha; Manthorpe, Jill; Walters, Kate; Moore, Kirsten; Harrison Dening, Karen; Ward, Jane; Rait, GretaBackground Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.Item Open Access Dementia and comorbid cancer: challenges and implications for nursing practice.(RCNi, 2023-03-21) de Vries, Kay; Chaâbane, Fiona; Harrison Dening, KarenData regarding the prevalence of dementia and the prevalence of cancer suggest that a relatively large number of older people living with dementia may also have unsuspected comorbid cancer. Research into dementia and comorbid cancer is limited. The existing literature shows that people living with dementia have much lower cancer survival rates than people who do not have dementia, perhaps due to advanced age and cancer being diagnosed at a late stage or not at all. In people with dementia, investigating and managing cancer is complicated by cognitive impairment, atypical presentation, communication difficulties and potential behavioural issues – all of which may deter healthcare professionals from conducting patient assessments and screening tests. In this article, the authors use a case study to illustrate the challenges that can arise when a person living with dementia develops cancer, particularly in relation to diagnosis, pain assessment, decision-making and carer involvement.Item Open Access Developing and evaluating online COVIDcentric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol(Springer, 2021-08-09) Harding, Andrew; Preston, Nancy; Doherty, Julie; Cousins, Emily; Varey, Sandra; McCann, Adrienne; Harrison Dening, Karen; Finucane, Anne; Carter, Gillian; Mitchell, Gary; Brazil, KevinBackground: Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. Methods: The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 h a day) will be the unit of analysis or ‘case’. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6 and 9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. Discussion: The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be ‘COVIDItem Open Access Developing Country-specific Questions about End-of-life Care for Nursing Home Residents with Advanced Dementia using the Nominal Group Technique with Family Caregivers(Elsevier, 2021-07-23) Bavelaar, Laura; Nicula, Maria; Morris, Sophie; Kaasalainen, Sharon; Achterberg, Wilco; Loučka, Martin; Vlckova, Karolina; Thompson, Genevieve; Cornally, Nicola; Hartigan, Irene; Harding, Andrew; Preston, Nancy; Walshe, Catherine; Cousins, Emily; Harrison Dening, Karen; de Vries, Kay; Brazil, Kevin; van der Steen, JennyObjective: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care. Methods: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analysed and compared the QPLs using content analysis. Results: Four to 20 family caregivers per country were involved. QPLs ranged from 15-24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”. Conclusion: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. Practice implications: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.Item Open Access 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, GretaBackground 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.Item Open Access Ethical care during COVID-19 for care home residents with dementia(Sage, 2020-12-16) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenThe COVID-19 pandemic has had a devastating impact on care homes in the UK, particularly for those residents living with dementia. The impetus for this paper comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic were derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were: caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, wellbeing, safety and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this paper discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, wellbeing and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and PPE, unclear data and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.Item Open Access Four walls and a garden: Exploring the experiences of families affected by dementia during the COVID-19 pandemic(Sage, 2021-12-17) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenIntroduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic, and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: “busy life before lockdown”; Isolation: “four walls and a garden”; Living with restrictions: “treading on eggshells”; Discovering positives: “you are in the same boat”; Easing lockdown: “raring to go”; Heightened uncertainty: “things have changed”. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.Item Open Access 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, LouiseBackground: 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.Item Open Access LGBTQ+ people living with dementia: An under-served population(MA Healthcare, 2020-10-31) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenLesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) people living with dementia are an under-served population. They are often at greater risk of vulnerability, discrimination, loneliness, health inequalities and poorer health outcomes. This overview offers an introductory summary of some of the challenges and considerations facing LGBTQ+ people living with dementia. Particular themes include living with memory problems, remembering the past, reminiscence, personal relationships and receiving care. The overview also provides a summary of recommendations for improving the experiences and care of LGBTQ+ people living with dementia, which include comprehensive training for health and care professionals, as well as strengthened peer support networks. Areas for future research to fully understand the needs of this under-served population are also suggested.Item Embargo Minimising long-term effect of COVID-19 in dementia care(Elsevier, 2020-10-03) Harrison Dening, Karen; Lloyd-Williams, MariItem Open Access Palliative care in Creutzfeldt Jakob Disease: Looking back, thinking ahead(BMJ, 2021-01-22) de Vries, Kay; Cousins, Emily; Harrison Dening, KarenCreutzfeldt Jakob Disease is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end of life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes, and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant Creutzfeldt Jakob Disease; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services.Item Open Access The story of an emerging crisis: the impact of COVID-19 on care home residents with dementia in the UK(Bristol University Press, 2021-11-01) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenThe impact of COVID-19 in UK care homes has been significant: for staff, residents and people with dementia. Given the rapidly changing circumstances, the media, limitations notwithstanding, have reported vital insights from the frontline. A qualitative analysis of news articles across three time points reveals the story of an emerging crisis in UK care homes, beginning with a sole focus on hospital care and resulting in tragically high death rates. This public-facing narrative has potential to: advocate for increased resources in care homes; drive government accountability; highlight improvements for care practices; bear witness to the experiences of a vulnerable population.Item Open Access 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, ClaireBackground 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.Item Open Access 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, LouiseObjectives 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.Item Open Access What works in managing complex conditions in older people in primary and community care? A state-of-the-art review(Wiley, 2020-07-15) Frost, Rachael; Rait, Greta; Wheatley, Alison; Harrison Dening, Karen; Allan, Louise; Banerjee, Sube; Manthorpe, Jill; Walters, KateThe number of older people living with complex health conditions is increasing, with the majority of these managed in primary and community settings. Many models of care have been developed to support them, however, there is mixed evidence on their value and they include multiple overlapping components. We aimed to synthesise the evidence to learn what works for managing complex conditions in older people in primary and community care. We carried out a state-of-the-art review of systematic reviews. We searched three databases (January 2009 to July 2019) for models of primary and community care for long-term conditions, frailty, multimorbidity and complex neurological conditions common to older people such as dementia. We narratively synthesised review findings to summarise the evidence for each model type and identify components which influenced effectiveness. Out of 2,129 unique titles and abstracts, 178 full texts were reviewed and 54 systematic reviews were included. We found that the models of care were more likely to improve depressive symptoms and mental health outcomes than physical health or service use outcomes. Interventions including self-management, patient education, assessment with follow-up care procedures, and structured care processes or pathways had greater evidence of effectiveness. The level of healthcare service integration appeared to be more important than inclusion of specific professional types within a team. However, more experienced and qualified nurses were associated with better outcomes. These conclusions are limited by the overlap between reviews, reliance on vote counting within some included reviews and the quality of study reports. In conclusion, primary and community care interventions for complex conditions in older people should include: (a) clear intervention targets; (b) explicit theoretical underpinnings; and (c) elements of self-management and patient education, structured collaboration between healthcare professionals and professional support. Further work needs to determine the optimal intensity, length, team composition and role of technology in interventions.