Marie Poole

The effectiveness of collaborative care for people with memory problems in primary care: results of the CAREDEM case management modelling and feasibility study.

BACKGROUNDnPeople with dementia and their families need support in different forms, but currently services are often fragmented with variable quality of care. Case management offers a way of co-ordinating services along the care pathway and therefore could provide individualised support; however, evidence of the effectiveness of case management for dementia is inconclusive.nnnOBJECTIVEnTo adapt the intervention used in a promising case management project in the USA and test its feasibility and acceptability in English general practice.nnnDESIGNnIn work package 1, a design group of varied professionals, with a carer and staff from the voluntary sector, met six times over a year to identify the skills and personal characteristics required for case management; protocols from the US study were adapted for use in the UK. The feasibility of recruiting general practices and patient-carer dyads and of delivering case management were tested in a pilot study (work package 2). An embedded qualitative study explored stakeholder views on study procedures and case management.nnnSETTINGnFour general practices, two in the north-east of England (Newcastle) one in London and one in Norfolk, took part in a feasibility pilot study of case management.nnnPARTICIPANTSnCommunity-dwelling people with dementia and their carers who were not already being case managed by other services.nnnINTERVENTIONnA social worker shared by the two practices in the north-east and practice nurses in the other two practices were trained to deliver case management. We aimed to recruit 11 people with dementia from each practice who were not already being case managed.nnnMAIN OUTCOME MEASURESnNumbers of people with dementia and their carers recruited, numbers and content of contacts, needs identified and perceptions of case management among stakeholders.nnnRESULTSnRecruitment of practices and patients was slow and none of the practices achieved its recruitment target. It took more than 6 months to recruit a total of 28 people with dementia. Practice Quality and Outcome Framework registers for dementia contained only 60% of the expected number of people, most living in care homes. All stakeholders were positive about the potential of case management; however, only one of the four practices achieved a level of case management activity that might have influenced patient and carer outcomes. Case managers activity levels were not related solely to time available for case management. Delivery of case management was hindered by limited clarity about the role, poor integration with existing services and a lack of embeddedness within primary care. There were discrepancies between case manager and researcher judgements about need, and evidence of a high threshold for acting on unmet need. The practice nurses experienced difficulties in ring-fencing case management time.nnnCONCLUSIONSnThe model of case management developed and evaluated in this feasibility study is unlikely to be sustainable in general practice under current conditions and in our view it would not be appropriate to attempt a definitive trial of this model. This study could inform the development of a case management role with a greater likelihood of impact. Different approaches to recruiting and training case managers, and identifying people with dementia who might benefit from case management, are needed, as is exploration of the scale of need for this type of working.nnnTRIAL REGISTRATIONnCurrent Controlled Trials ISRCTN74015152.nnnFUNDINGnThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 52. See the NIHR Journals Library website for further project information.

The impact of organisational culture on the delivery of person‐centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: comparing practice with legal standards

BACKGROUNDnThis article stems from a larger project which considers ways of improving assessments of capacity and judgements about best interests in connection with people with dementia admitted to acute hospitals with respect to decisions about place of residence.nnnAIMSnOur aim is to comment on how assessments of residence capacity are actually performed on general hospital wards compared with legal standards for the assessment of capacity set out in the Mental Capacity Act, 2005 (MCA).nnnMETHODnOur findings are grounded in ethnographic ward-based observations and in-depth interviews conducted in three hospital wards, in two hospitals (acute and rehabilitation), within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009. Twenty-nine patient cases were recruited to the study. We also draw from broader conceptions of capacity found in domestic and international legal, medical, ethical and social science literature.nnnRESULTSnOur findings suggest that whilst professionals profess to be familiar with broad legal standards governing the assessment of capacity under the MCA, these standards are not routinely applied in practice in general hospital settings when assessing capacity to decide place of residence on discharge from hospital. We discuss whether the criteria set out in the MCA and the guidance in its Code of Practice are sufficient when assessing residence capacity, given the particular ambiguities and complexities of this capacity.nnnCONCLUSIONSnWe conclude by suggesting that more specific legal standards are required when assessing capacity in this particular context.

Understanding the challenges to implementing case management for people with dementia in primary care in England: a qualitative study using Normalization Process Theory

BackgroundCase management has been suggested as a way of improving the quality and cost-effectiveness of support for people with dementia. In this study we adapted and implemented a successful United States’ model of case management in primary care in England. The results are reported elsewhere, but a key finding was that little case management took place. This paper reports the findings of the process evaluation which used Normalization Process Theory to understand the barriers to implementation.MethodsEthnographic methods were used to explore the views and experiences of case management. Interviews with 49 stakeholders (patients, carers, case managers, health and social care professionals) were supplemented with observation of case managers during meetings and initial assessments with patients. Transcripts and field notes were analysed initially using the constant comparative approach and emerging themes were then mapped onto the framework of Normalization Process Theory.ResultsThe primary focus during implementation was on the case managers as isolated individuals, with little attention being paid to the social or organizational context within which they worked. Barriers relating to each of the four main constructs of Normalization Process Theory were identified, with a lack of clarity over the scope and boundaries of the intervention (coherence); variable investment in the intervention (cognitive participation); a lack of resources, skills and training to deliver case management (collective action); and limited reflection and feedback on the case manager role (reflexive monitoring).ConclusionsDespite the intuitive appeal of case management to all stakeholders, there were multiple barriers to implementation in primary care in England including: difficulties in embedding case managers within existing well-established community networks; the challenges of protecting time for case management; and case managers’ inability to identify, and act on, emerging patient and carer needs (an essential, but previously unrecognised, training need). In the light of these barriers it is unclear whether primary care is the most appropriate setting for case management in England. The process evaluation highlights key aspects of implementation and training to be addressed in future studies of case management for dementia.

Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital

BackgroundA significant proportion of patients in an acute hospital is made up of older people, many of whom have cognitive impairment or dementia. Rightly or wrongly, if a degree of confusion is apparent, it is often questioned whether the person is able to return to the previous place of residence. We wished to understand how, on medical wards, judgements about capacity and best interests with respect to going home are made for people with dementia and how decision-making around hospital discharge for people with dementia and their families might be improved. Our research reflects the jurisdiction in which we work, but the importance of residence capacity rests on its implications for basic human rights.MethodsThe research employed a ward-based ethnography. Observational data were captured through detailed fieldnotes, in-depth interviews, medical-record review and focus groups. Themes and key issues were identified using constant comparative analysis of 29 cases. Theoretical sampling of key stakeholders was undertaken, including patients with dementia (with and without residence capacity), their relatives and a range of practitioners. The research was carried out in three hospital wards (acute and rehabilitation) in two hospitals within two National Health Service (NHS) healthcare trusts in the North of England over a period of nine months between 2008 and 2009.ResultsOur analysis highlights the complexity of judgements about capacity and best interests in relation to decisions about place of residence for people with dementia facing discharge from hospital. Five key themes emerged from data: the complexity of borderline decisions; the requirement for better understanding of assessment approaches in relation to residence capacity; the need for better documentation; the importance of narrative; and the crucial relevance of time and timing in making these decisions.ConclusionsWe need: more support and training for practitioners, as well as support for patients and families; clarity about the information to be imparted to the person with dementia; more advocacy for people with dementia; appropriate assessments embedded in routine clinical practice; the patient with dementia to be centre-stage; and properly resourced step-down or rehabilitation units to facilitate timely and good decision-making about place of residence.

Value judgements and conceptual tensions: decision-making in relation to hospital discharge for people with dementia

We reflect, using a vignette, on conceptual tensions and the value judgements that lie behind difficult decisions about whether or not the older person with dementia should return home or move into long-term care following hospital admission. The paper seeks, first, to expose some of the difficulties arising from the assessment of residence capacity, particularly around the nature of evaluative judgements and conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests around place of residence, which demonstrates significant conceptual tensions. In addition, ‘best interests’ raise issues around the perception of risk and the perceptions of the family and crucially involve the notions of autonomy and trust. Finally, we not only gesture at some practical considerations based on insights from values-based medicine, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests.

Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals

Objectives People living with dementia (PLWD) have a high prevalence of comorbidty. The aim of this study was to explore the impact of dementia on access to non-dementia services and identify ways of improving service delivery for this population. Design Qualitative study involving interviews and focus groups. Thematic content analysis was informed by theories of continuity of care and access to care. Setting Primary and secondary care in the South and North East of England. Participants PLWD who had 1 of the following comorbidities—diabetes, stroke, vision impairment, their family carers and healthcare professionals (HCPs) in the 3 conditions. Results We recruited 28 community-dwelling PLWD, 33 family carers and 56 HCPs. Analysis resulted in 3 overarching themes: (1) family carers facilitate access to care and continuity of care, (2) the impact of the severity and presentation of dementia on management of comorbid conditions, (3) communication and collaboration across specialities and services is not dementia aware. We found examples of good practice, but these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Conclusions This study suggests that, in order to improve access and continuity for PLWD and comorbidity, a significant change in the organisation of care is required which involves: coproduction of care where professionals, PLWD and family carers work in partnership; recognition of the way a patients diagnosis of dementia affects the management of other long-term conditions; flexibility in services to ensure they are sensitive to the changing needs of PLWD and their family carers over time; and improved collaboration across specialities and organisations. Research is needed to develop interventions that support partnership working and tailoring of care for PLWD and comorbidity.

End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice

Background Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Methods and findings Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. Conclusions The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.

What is important at the end of life for people with dementia? The views of people with dementia and their carers.

Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate, make assessment and shared decision‐making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person‐centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high‐quality care at this time are a neglected area.

Nudging the Older Person Into Care: An End to the Dilemma?

that makes the performance of an action or a behavior more likely, primarily by triggering the influencee’s shallow cognitive processes, while it preserves the influencee’s choice set and is substantially noncontrolling (Saghai 2013). Many types of influences can be used as part of a relationship or interaction, and some may dominate others, but a type of influence by itself does not constitute a whole model of patient–physician relationship, at least not in any useful sense of a model. Finally, nudges do not necessarily overcome the gap between paternalism and autonomy simply because they may benefit third parties (for instance, certain immunization programs that do not benefit the person getting vaccinated) or the nudger heror himself, not the nudgee. It is time for the nudge debate to move past the framework set by libertarian paternalism.