Background: Dementia is said to be under-recognized and sub-optimally managed in primary care, but there is little information about actual processes of diagnosis and clinical care. Aim: To determine general practitioners’ concordance with clinical guidelines on the diagnosis and management of patients with dementia. Design: Unblinded, cluster randomized pre-test–post-test controlled trial involving 35 practices in the UK. Methods: Patients with a diagnosis of probable or confirmed dementia were identified in practices, and permission sought from the older person and/or their carer to study the medical records of these patients. Medical records were reviewed using a data extraction tool designed for the study and based on published guidelines, and unweighted scores for diagnostic concordance and management concordance were calculated. Results: We reviewed 450 records of patients aged 75 and over with a diagnosis of dementia and found that: only 4% of cases were identified first in secondary care; two-thirds of those identified in primary care were referred immediately; about one-third identified had informant history and blood tests documented at the Index consultation and one-fifth underwent cognitive function testing. Discussion: The records analysed in this study came from a period before the Quality Outcomes Framework and show that the documentation in primary care of the diagnostic process in dementia syndromes is good, although there were significant gaps, particularly around depression case-finding. Information about management processes were less evident in the records.
The emerging UK national research network in neurodegenerative diseases and dementias aims to promote large-scale community-based studies of therapeutic interventions, based in primary care. However, trials in primary care settings can be problematic, a common difficulty being the recruitment of a large enough sample. The article discusses recruitment issues in a multi-centre randomized controlled trial of differing educational approaches to improving dementia care in general practice. Sample size calculations based on community studies of prevalence may be misleading in intervention trials which may recruit practices with atypical demography. Recruitment rates for practitioners in this study were lower than expected. Professionals excluded themselves from the study mainly due to pressures of time and staff shortages, and we detected both ambivalent attitudes to primary care research and a perception that research into dementia care was not a high priority. Evaluation of the quality of care may be perceived as criticism of clinical practice, at a time when general practice is undergoing major administrative and contractual changes. Variations in Research Ethics Committee conditions for approval led to different methods of recruitment of patients and carers into the study, a factor which may have contributed to disparate levels of recruitment across study sites. Patient and carer levels of recruitment were lower than expected and were affected partly by carers' time pressures and other family commitments, but largely by problems in identifying patients and carers in the practices. The development of research potential in primary care is at an early stage and studies reliant on patient recruitment in general practice must allow for multiple obstacles to enrollment. This is particularly relevant for studies of dementia care, where the prevalence of dementia in a demographically average population is low and the incidence very low, compared with other disabilities. Professionals may give dementia low priority in allocating practice time for research projects, and strategies to address this problem are needed.
The role of families in supporting people with dementia is widely acknowledged in literature and UK government policy. The role of general practice in ensuring early and effective support for people living with mental health problems including dementia is also enshrined in UK policy. As part of a larger study, a total of 122 carers were asked to rate predefined aspects of the primary care response. For some responses they were also asked to provide a reason for their rating. The purpose of this study was to examine carers' accounts of contacts with general practitioners (GPs) and general practice teams when they were first approached with concerns about their relative. Findings suggest that, on average, carers rate the service as being at least ‘good'. However, their accounts describe a wide variety of experiences and demonstrate that expressed satisfaction does not necessarily reflect a satisfactory service. Both practitioner-related and carer-related issues were cited as reasons for their ratings. Implications for practice and research are discussed.
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Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
BACKGROUND:The arrangements for delivering social work and primary health care to older people in England and Wales are currently subject to rapid re-configuration, with the development of integrated primary care and social services trusts.OBJECTIVE:To investigate perceptions of joint working in social services and general practice.METHODS:The study setting was two London boroughs covered by one health authority, one NHS Community Health Services Trust, four Primary Care Groups and two social services departments. All social work team managers in both areas were interviewed together with a purposive sample of social workers with a high number of older clients on their caseloads. A sample of GPs was sought using a sampling frame of practice size in each borough. Structured interviews with open and closed questions were used. Tape-recorded interviews were transcribed and subject to thematic analysis. Analysis of emergent themes was aided by the use of Atlas-ti.RESULTS:Social workers and GPs agree on the need for joint working, but have different understandings of it, each profession wanting the other to change its organizational culture. Co-location of social and health care is seen as desirable, but threatening to social work. Concerns about differences in power and hierarchical authority are evident and explicit in social work perspectives. Conflict resolution strategies include risk minimization, adopting pragmatic, case-specific solutions rather than remaining consistent with policy, using nurses as mediators, and resorting to authority.CONCLUSIONS:Although this is a study from urban areas in England, its findings may have wider significance since we have found that resources and professional skills may be more important than organizational arrangements in collaborative working between disciplines. Primary Care Trusts in England and Wales should promote awareness of these different perspectives, perceived risks and conflict minimization strategies in their work on clinical governance and professional development.
There have been few economic evaluations of joint working between social and health care. This paper focuses on collaboration between professionals providing care for people aged 75 and over, and examines the economic costs of contacts made by social workers with community nurses, GPs and older people or their carers. Two areas were studied, one where social care and primary care services were co‐located, and the other with social work teams located separately from local health services. The two forms of social care location had an impact on contacts and costs but overall it was fairly small. Contact costs made up only a small amount of the overall costs of care These findings suggest that altering the organisational arrangements for care delivery may improve the process of care delivery, but result in only minor changes to the proportion of overall resources directed to older service users.
In England, the theme of promoting collaborative working between social and primary health care remains high on the policy agenda. The underlying assumption, largely untested, is that a greater degree of structural integration benefits service users. This paper reports the findings from a feasibility study comparing two models of joint working and examining the relative impact of personal characteristics, service use and co-location on the likelihood of older people remaining in the community. Baseline standardised interviews with 79 older people aged 75 + with complex needs in two social services departments were carried out following referral, covering social circumstances, physical and mental health and services received, with follow-up interviews after six months. Contacts between social workers and primary care were tracked. The findings suggest that co-location does not necessarily lead to substantially closer interprofessional working in terms of greater contact between social workers and GPs or social workers and community nurses. Factors affecting outcome were degree of cognitive impairment, intensity of home care received and whether the older person lived alone. Whatever the model of collaborative working, its effects on remaining in the community must be assessed in the wider context of the characteristics and services received by older people.
While collaborative (or joint) working between social services and primary healthcare continues to rise up the policy agenda, current policy is not based on sound evidence of benefit to either patients or the wider community. Both sets of practitioners report benefits for their own work from adopting new arrangements for collaboration. The underlying assumption behind much of this activity is that a greater degree of integration provides benefits to both users and their carers, a perspective that at times obscures the issue of resource availability, especially in the form of practical community services such as district nursing and home help. At the present time there is insufficient evidence to demonstrate that formal arrangements for collaborative working (CW) are better than those forged informally between committed individuals or teams. Furthermore, arrangements for CW have not hitherto been widely evaluated in systematic studies with a comparative design and focus on outcomes for users and carers rather than on processes. In this paper we propose a number of process measures for future evaluation of CW: (1) study populations must be comparable; (2) details of how services are actually delivered must be obtained and colocation should not be assumed to mean collaboration; (3) care packages in areas of comparable resources should be examined; (4) both destinational outcomes and user-defined evaluations of benefit should be considered; (5) possible disadvantages of integrated care also need to be actively considered; (6) evaluations should include an economic analysis. Those implementing new policies in Primary Care Trusts have, at present, little sound evidence to guide them in their innovative work. However, they should take the opportunity to rigorously test the advantages and disadvantages of collaboration.
OBJECTIVE To measure general practitioners' knowledge of, confidence with and attitudes to the diagnosis and management of dementia in primary care. SETTING 20 general practices of varying size and prior research experience in Central Scotland, and 16 similarly varied practices in north London. PARTICIPANTS 127 general practitioners who had volunteered to join a randomised controlled trial of educational interventions about dementia diagnosis and management. METHODS Self-completion questionnaires covering knowledge, confidence and attitudes were retrieved from practitioners prior to the educational interventions. RESULTS General practitioners' knowledge of dementia diagnosis and management is good, but poor awareness of its epidemiology leads to an over-estimate of caseload. Knowledge of local diagnostic and support services is less good, and one third of general practitioners expressed limited confidence in their diagnostic skills, whilst two-thirds lacked confidence in management of behaviour and other problems in dementia. The main difficulties identified by general practitioners were talking with patients about the diagnosis, responding to behaviour problems and coordinating support services. General practitioners perceived lack of time and lack of social services support as the major obstacles to good quality care more often than they identified their own unfamiliarity with current management or with local resources. Attitudes to the disclosure of the diagnosis, and to the potential for improving the quality of life of patients and carers varied, but a third of general practitioners believed that dementia care is within a specialist's domain, not that of general practice. More experienced and male general practitioners were more pessimistic about dementia care, as were general practitioners with lower knowledge about dementia. Those reporting greater difficulty with dementia diagnosis and management and those with lower knowledge scores were also less likely to express attitudes endorsing open communication with patient and carer. CONCLUSION Educational support for general practitioners should concentrate on epidemiological knowledge, disclosure of the diagnosis and management of behaviour problems in dementia. The availability and profile of support services, particularly social care, need to be enhanced, if earlier diagnosis is to be pursued as a policy objective in primary care.
The objective of this study was to determine how the entry into long term care of people assessed by their local social services department (SSD) under the National Health Service and Community Care Act 1990 is predicted by the severity of their cognitive impairment, care provided by family members, and the receipt of community care services. The design involved a cohort study of people over one and a half years following referral (min-max: 1-2 years) from three SSDs (county council, metropolitan and inner London boroughs). Consecutive recruitment of 141 people with cognitive impairment aged 65 and over took place over a 4 month period. The main outcome measure was survival analysis of time taken from referral to entering long term care at follow-up. The receipt and intensity of community care services increased the probability of remaining at home. People with mild or moderate cognitive impairment were more likely to remain at home if they had a spouse or daughter carer. Analysis of the interaction between three main effects predicting entry to long term care (severity of cognitive impairment, access to a carer, and the receipt of home care or day care) suggests that while carers are central in determining whether older people with cognitive impairment are able to remain living in the community, there are limits to the care they can provide.