BackgroundPeople 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.ObjectiveTo adapt the intervention used in a promising case management project in the USA and test its feasibility and acceptability in English general practice.DesignIn 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.SettingFour 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.ParticipantsCommunity-dwelling people with dementia and their carers who were not already being case managed by other services.InterventionA 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.Main outcome measuresNumbers of people with dementia and their carers recruited, numbers and content of contacts, needs identified and perceptions of case management among stakeholders.ResultsRecruitment 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.ConclusionsThe 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.Trial registrationCurrent Controlled Trials ISRCTN74015152.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 18, No. 52. See the NIHR Journals Library website for further project information.
Discuss this article' [Patient] reports that she generally sleeps okay, but usually has to get up 3-4x during the night to go to the toilet. This affects [carer's] sleeping also as he has to get up to help her find the toilet and each time can take up to 30 min.[Carer] stated he does not tend to be able to go straight back to sleep and the nightly disruption does mean he is frequently quite tired during the day.' Researcher codingPWD unmet need relating to physical wellbeing PWD unmet need relating to emotional wellbeing PWD unmet need relating to daily routines PWD unmet need 'coping with dementia-related problems'Carer unmet need 'coping with dementiarelated problems'Carer unmet need relating to daily routines Action -physical wellbeing addressed by other professional Carer unmet need relating to physical wellbeing PWD = person with dementia.
Aim: To propose a research agenda on case management for people with dementia.Background: A recent review of studies of case management in dementia argues that
BackgroundCommunity-based support will become increasingly important for people with dementia, but currently services are fragmented and the quality of care is variable. Case management is a popular approach to care co-ordination, but evidence to date on its effectiveness in dementia has been equivocal. Case management interventions need to be designed to overcome obstacles to care co-ordination and maximise benefit. A successful case management methodology was adapted from the United States (US) version for use in English primary care, with a view to a definitive trial. Medical Research Council guidance on the development of complex interventions was implemented in the adaptation process, to capture the skill sets, person characteristics and learning needs of primary care based case managers.MethodsCo-design of the case manager role in a single NHS provider organisation, with external peer review by professionals and carers, in an iterative technology development process.ResultsThe generic skills and personal attributes were described for practice nurses taking up the case manager role in their workplaces, and for social workers seconded to general practice teams, together with a method of assessing their learning needs. A manual of information material for people with dementia and their family carers was also created using the US intervention as its source.ConclusionsCo-design produces rich products that have face validity and map onto the complexities of dementia and of health and care services. The feasibility of the case manager role, as described and defined by this process, needs evaluation in ‘real life’ settings.
In the last 14 years, research has identified that patients with heart failure suffer symptoms as severe as people with cancer and would greatly benefit from a palliative care approach. In spite of this fact, it is recognized within the National Service Framework for Heart Failure (Department of Health (DoH), 2000b) and the Cancer Plan (DoH, 2000a) that service provision from a palliative care perspective remains inadequate. In order to address the palliative care needs for patients with heart failure and their families a multidisciplinary team approach between primary and secondary care is needed. This article will review the literature relating to improvement of services from a palliative care perspective. It discusses the quality of life experienced by patients with heart failure and their families and the barriers to providing a palliative care approach from a multidisciplinary team perspective. Finally, it attempts to present future recommendations to develop a structured service provision.
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