Family Practice Advance Access originally published online on February 3, 2006
Family Practice 2006 23(3):353-362; doi:10.1093/fampra/cmi116
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Obstacles to Shared Care for Patients with Dementia: A qualitative study
Centre for Ageing Population Studies, Department of Primary Care & Population Sciences, Royal Free & UCL Medical School UK
Correspondence to Dr Steve Iliffe, Centre for Ageing Population Studies, Department of Primary Care & Population Sciences, RFUCLMS, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK; Email s.iliffe{at}pcps.ucl.ac.uk
Received 3 March 2005; Accepted 28 December 2005.
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Abstract |
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Background. All Primary Care Trusts in England were meant to have shared care protocols for antidementia medication use in place by 1 April 2004. Shared care of medical treatment in dementia depends upon early diagnosis, but under-recognition of and under-response to dementia appear widespread in general practice.
Aim. To investigate the perceptions of specialists and generalists about the potential for shared care of people with dementia.
Design of study. Qualitative study with semistructured interviews.
Setting. Three inner-city and two rural areas.
Methods. Semistructured interviews were arranged at the participants' convenience and were tape-recorded and transcribed. Thematic analysis of the anonymized transcripts was undertaken and a case and cross-case analysis was performed.
Results. Thirty-nine GPs and 30 specialists were interviewed. Broad themes were reduced to following four key categories which appear to be layered over each other: therapeutic nihilism; risk reduction or avoidance; concerns about competency; and resources for shared care.
Conclusion. Roles for primary and secondary care professionals are inappropriately distributed and require clearer definition. Resistance to shared care mostly comes from within general practice and reflects concerns about staffing, time constraints, lack of experience and confidence in making and disclosing a diagnosis. Developers of shared care protocols must dissect layered obstacles, addressing the issues of therapeutic nihilism, risk management and clinical competence.
Keywords. Dementia, primary care, qualitative research, shared care.
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Background |
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TopAbstractBackgroundParticipants and methodsResultsDiscussionConclusionsDeclarationReferences |
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Early recognition of dementia is rising up the global policy agenda, driven in part by the emergence of a new generation of antidementia drugs, but the implications for health and social care services have not been explored sufficiently.1 Nevertheless, the National Service Framework (NSF) for Older People (2001) detailed new national standards of care for older people, including those with mental health problems. Standard seven of this NSF states that older people who have mental health problems should have access to integrated mental health services, provided jointly by the National Health Service and local government, to ensure effective diagnosis, treatment and support for them and their carers. By April 2004, Primary Care Trusts should have ensured that shared care protocols had been agreed with local specialist services, to diagnose, treat and care for people with dementia (DOH, 2001).2
Shared care, defined as shared responsibility, enhanced information exchange, continuing medical education, and explicit clinical guidelines between a hospital outpatient clinic and primary care, appears a rationale division of labour within medical systems dealing with long-term medical problems. There is evidence of benefit in the management of diabetes,3,4 heart disease5 and urinary tract disorders.6 Although we could not find examples of rigorous evaluation of shared care in neurodegenerative disorders (like dementia syndromes), there is some evidence about the impact of shared care approaches from the management of long-term mental health disorders which may be relevant to dementia care. For example, a Canadian study developed a monitoring programme between psychiatrists and primary care practitioners which aimed to provide GPs with support for patient management by facilitating improvements in communication. Evaluation through case notes and a satisfaction and effectiveness questionnaire found improvements in satisfaction and care with improved access to specialist support.7
McCrone et al.8 examined the economic implications of differing levels of shared care for people with enduring mental health problems. A multivariate analysis of case histories found participants receiving a low level of shared care used residential care services less and had fewer contact with secondary care specialists, with associated lower costs compared with those receiving medium or high levels of shared care. The impact of the differing levels of shared care and the differing patterns of service use were not linked to health outcomes.8
An exploratory cluster randomized controlled trial of people with long-term mental illness evaluated a mental health link programme which aimed to improve communication and care between specialist teams and primary care. Intervention patients had fewer relapses but with no differences in documented patterns of care compared with control group patients. Intervention practitioners were more satisfied and improvements in service development were noted. There was an increased mean cost of £63 for patients in the intervention group (2004).9
If this evidence is applicable to dementia syndromes, shared care for people with dementia, as required in the UK by the National Service Framework for Older People, can be defended as being likely to improve the experience of care for all parties, although possibly at greater cost to the services.
Rationalization of dementia services seems realistic given both rising public awareness of possible cognitive, emotional and functional changes, and increasing vigilance among community-based professionals.10 However, there remains a problem of under-recognition and under-response to dementia in primary care.11,12 This under-recognition and under-response may be due in part to the failure to recognize signs of a complex and slowly evolving disorder, and in part to negative attitudes towards the diagnosis and assessment of dementia.13 GPs may be embarrassed or anxious about carrying out cognitive function tests,14 and do not benefit from using standard diagnostic criteria presented as clinical guidelines.15 Practitioners who have most difficulty in making the diagnosis of dementia also have more problems in disclosing the diagnosis, particularly to the person with dementia.16 Nevertheless, GPs are being encouraged to undertake activities that they find particularly difficult, but are urgently needed,17 like providing education, offering psychological support for carers and mobilizing carer social support.18
There is a danger that policy will run too far ahead of practice, and be dismissed as unrealistic. The policy imperatives promoting collaborative working across disciplines for people with dementia, and the problems of diagnosis, management and support for individuals and their families prompts a question for general practice: what are the necessary and sufficient conditions for shared care of patients with dementia? In this paper we describe a qualitative study that explores this question from the perspectives of generalists and specialists involved in dementia care. In it we make the assumption that shared care refers to clinical care divided between generalists (doctors or nurses) and specialists [doctors, nurses or psychologists working in old age psychiatry, medicine for the elderly, community mental health teams (CMHTs), memory clinics or neurology].
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Participants and methods |
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We interviewed specialists and GPs in purposively selected urban and rural settings to discuss dementia diagnosis and management, and attitudes towards shared care of patients with dementia. Sites were selected to reflect the different populations of inner city, urban, suburban and rural areas. One area in Scotland was included (even though the National Service Framework for Older People does not apply there) because there was a long tradition of collaboration between a pioneering Dementia Care Centre at Stirling University and local general practices. Specialists included old age psychiatrists, community mental health nurses and psychologists, but we did not include primary care nurses because on the basis of other work19,20 we felt that their involvement in the development and early implementation phase of shared care protocols was likely to be limited. Approval was obtained from ethics committees in Camden & Islington, Barnet, Bradford, North Cumbria and Forth Valley. Interviews took place between April and December 2003, that is after the publication of the National Service Framework for Older People but not the deadline for the establishment of shared care protocols for dementia of 1 April 2004.
Semistructured interview schedules were developed from a review of the current literature, piloted with GPs before the study started, and amended for the main study. The themes covered in the interviews are shown in Table 1 and are designed to elicit views and experiences from GPs. The same questions were asked to specialists, but the discussion about shared care was opened with the question: Would you consider requesting shared care of patients with dementia with colleagues in general practice—for example, in monitoring the effects of anti-dementia drugs?
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Two experienced female qualitative researchers with a background in ageing-related research conducted the interviews [JW, DH].
All GPs and specialists in the care of older people with dementia were invited for interview by letter. Interviews were arranged at the participants' convenience and were tape-recorded in the practitioners' workplace with an assurance of confidentiality and anonymity. The tape-recorded interviews were transcribed. Thematic analysis of the transcripts was carried out in which the text was coded and annotated to identify emergent regularities in the text and grouped into themes.21 The codes and annotations from individual interviews were pulled together and patterns and regularities across the data were then sought,22 that is, case analysis was followed by cross-case analysis23 [SI, JW, DH]. For each individual case, we compared the attitudes and experiences of each clinician towards dementia diagnosis and management and shared care. We also compared the decision making process and other themes emerging from the interviews across the two professional groups.24 Data analysis was commenced during data collection25 and as subsequent interview data were analysed, themes were added to and altered. When it appeared that themes had been validated by sufficient interview data, that is, when the data had reached theoretical saturation, recruitment efforts and interviewing were stopped. To ensure reliability, the original transcripts were read and the themes agreed by all authors.
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Results |
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TopAbstractBackgroundParticipants and methodsResultsDiscussionConclusionsDeclarationReferences |
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GPs
We approached 114 GPs and 39 (34%) were interviewed. Fourteen GPs were located in the London area, 5 in Bradford, 11 in Cumbria and 9 in Central Scotland.
Specialists
We invited 53 specialists in the same localities and 30 (57%) agreed to be interviewed. Sixteen old age psychiatrists, four Clinical Psychologists, one counselling psychologist, five Community Mental Health nurses, three Admiral Nurses and one Clinical Nurse specialist agreed to be interviewed. Twenty-five specialists were located in the London area, none in Bradford, four in Cumbria and one in Central Scotland.
The characteristics of the interview sample are shown in Table 2 below.
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The themes have emerged from the initial analysis of transcripts, and the broader categories into which we grouped them are shown in Figure 1.
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We reduced the themes to the following four categories: therapeutic nihilism; risk reduction or avoidance; concerns about competency; and resources and roles. No differences were discernible between respondents in England and in Scotland in the content and meaning of these themes. In the boxes containing quotes, S and GP refer to specialist and generalist.
Therapeutic nihilism
There are genuine difficulties in recognizing dementia in its early phases, in distinguishing it from other clinical disorders like anxiety states and depression, in monitoring changes in dementia (particularly when ACEI medication is being used) and in understanding some of the problems that emerge in the course of the disease process. Specialists do not believe that GPs lack competence to undertake these tasks, but rather lack either specific skills (which could be acquired) or, more seriously, lacked a general commitment to undertake the tasks of dementia diagnosis and management; that is, they identified a problem of therapeutic nihilism (see Box 1, quote 1).
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Therapeutic nihilism is associated with images of dementia as a severe disability and with the stigma of mental illness (a literal loss of mind) held more broadly in the population (see Box 1, quote 2).
These forms of negativity not only hold back recognition of early dementia, but can influence professional awareness of the services and resources available to people with dementia (see Box 1, quote 3). As a consequence of the negativity surrounding the diagnosis of dementia some GPs may delay referral to specialist services, feeling that the tests required are intrusive and potentially frightening to the person and families involved (see Box 1, quote 4). Specialists noted this delay in referral and also the variability in the quality of information given at referral (see Box 1, quote 5).
Risks reduction or avoidance
There are serious dilemmas for professionals in making and disclosing a diagnosis of dementia, arising from anxieties about the impact of disclosure and the coping strategies that individuals use to come to terms with a progressive disability (see Box 2, quote 1). A view expressed by some old age psychiatrists was that the risks of early diagnosis of dementia, and therefore of early disclosure, are few and were easily offset by a well-organized system of support to people with dementia and their families (see Box 2, quote 2). This view seemed to emerge in places with well coordinated multidisciplinary teams. Other views from centres with different approaches were less positive (see Box 2, quote 3).
BOX 2 Risk reduction or avoidance
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The exception to this ‘low risk’ view arises when people with early dementia have an image of its end-stage forms that does not correspond to their experience of changes in themselves. In this circumstance there is potential for a depressive response and disengagement from services (see Box 2, quote 4). The processes of diagnosis and disclosure therefore need to be tailored to the individual, which is where knowledge of the individual before the onset of changes becomes vital.
The need to be person-centred is stressed when professionals are anxious about making and conveying the diagnosis of dementia, and results in the widespread use of euphemisms (‘memory problems’) or in reframing the primary need as one for support and care rather than for the naming of the disease process producing changes (see Box 2, quote 5).
Competence
A significant proportion of GPs believe that the clinical care of dementia is a specialist task, and are reluctant to participate in shared care. They have particular anxieties about misdiagnosis and its implications for patients and the doctor–patient relationship (see Box 3, quote 1).
BOX 3 Concerns about competency
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Although specialists always advocated conveying the diagnosis to the person and families involved they also acknowledged that talking about dementia was universally difficult, particularly when the patient lacked insight (see Box 3, quote 2).
GPs are aware of the specifics of monitoring that will be required of them in shared care of dementia, but felt that this was not where their area of expertise lay, seeing their role more as an overview of the individuals situation and physical health issues. Stopping medication was viewed as difficult by GPs because this would affect the relationship with their patient. Specialists who were viewed as external to this relationship were seen as better placed to be objective and to take on this uncomfortable role. Problems arising with polypharmacy were also seen as a barrier to medication management by some GPs (see Box 3, quote 3).
GPs and specialists both acknowledged that specific problematic cases would be within the specialist domain particularly with behavioural problems (see Box 3, quote 4).
Resources
The diagnostic decision-making process in general practice is influenced by perceptions of the availability and accessibility of specialized support for the person with dementia. GPs viewed specialists as being gatekeepers to acute mental health services such as specialist wards and Community Psychiatric Nurses (see Box 4, quote 1). Specialists mirrored this view in their role coordinating support services with their close working with the community mental health teams (see Box 4, quote 2).
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The cost implications of prescribing and monitoring medications were also frequently mentioned by GPs (see Box 4, quote 3). In order to deliver shared care GPs felt that protected time and additional staff would be required. Specialists agreed with this feeling that GPs could manage well with monitoring medications but that shortage of time and resources would have an impact upon this (see Box 4, quote 4).
Roles
Specialists tended to see the usefulness of the GPs role as dealing with co-existing physical problems and in their close relationship with the patient in the community. GPs did acknowledge that treating other physical problems may be a more pressing need than providing dementia care within the normal consultation process (see Box 5, quotes 1–2).
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Shared care was viewed as possible within the restrictions of time, resources and definition of roles (see Box 5, quote 3). Most GPs considered shared care existed to an extent already, although working together and good communication appeared to be built at an individual rather than organizational level (see Box 5, quote 4).
Specialists described shared care with general practice positively; however, they did not see it as key to the highly supportive system needed at the time of diagnosis and its disclosure (see Box 5, quote 5). There was one exception (a GP whose MD thesis was on shared care, see Box 5, quote 3). Specialists also thought there was a need for clarity on definition of roles (see Box 5, quote 6).
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Discussion |
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Shared care of patients with dementia already exists, where long-standing relationships between specialists and selected GPs allow easy communication. However, we believe that the narrow focus in the discussion of risk avoidance on the hazards of diagnosis is evidence that GPs were not familiar with management of dementia in the community, even though shared care was seen as happening, even if only informally. In our view their responses reveal significant obstacles to the extension of shared care approaches for people with dementia that need to be articulated and acknowledged before they can be overcome.
Our reading of the data from our interviews is that the core issue for practitioners is resources, meaning the availability of personnel and time to respond to patients with dementia. The message that emerges is that shared care programmes are unlikely to thrive in the absence of engaged and collaborative specialists, with the necessary level of support from community mental health nurses and psychologists. We do not get the impression from the accounts that this judgement arises from experience of shared care, but is an untested presumption, contradicted by those who seem simply to be getting on with it.
Around this core lies the issue of competence, in distinguishing the early changes of dementia from other disorders of later life, or in communicating the news about the diagnosis, or in reacting to problems that emerge in the course of the disease process. As Forget me Not (2000, 2002)26,27and Renshaw et al.28 demonstrated in surveys of GPs views on dementia, those working in areas where local training and education had taken place were more positive about the benefits of an early diagnosis. Educational tools and resources would be of benefit to general practice in reinforcing the benefits of initiating an early care package with multidisciplinary support, with specialists acting as both resources themselves, and as catalysts for changes in the division of labour. Making shared care protocols available may go some way to tackling therapeutic nihilism, and the anxieties about risks and competencies expressed by professionals, by widening discussion about the tasks of dementia care and the roles that different disciplines can play.
These are complex issues, as shown by the widespread use of euphemisms, which are explicitly linked to professional anxieties and difficulties, but also to an awareness of different coping strategies in different individuals. Practitioners talk indirectly or overtly about the need to minimize risks in reaching, conveying and responding to a diagnosis of dementia, and this risk awareness is the layer surrounding concerns about competence. The respondents demonstrated how they try to develop highly tailored dialogues with people whom they know well. What may be seen as concealment of symptoms, and as professional collusion with denial on the part of the person with dementia or their family, can also be seen as a productive function of accommodation to the changes of dementia that has to be understood and respected by professionals. Shared care projects that do not address this concern with risks may have problems in becoming embedded in everyday practice.
The positive experiences reported by some respondents have to be set against the opposite problem of therapeutic nihilism, the belief that interventions will not be beneficial, seems to be the most visible obstacle to shared care arrangements. This belief can find justification in some of the literature on shared care, which suggests that receipt of high levels of shared care is not necessarily associated with significant demographic or clinical characteristics and had limited value for patients in terms of improved clinical, social or general health functioning.29 The NICE guidelines30 are helpful in increasing awareness in primary care of the available pharmacological therapies, but the practitioners we interviewed were as sceptical about the benefits of drug treatment and inhibited in making early diagnoses by perceived limitations in local resources as those studied by Olafsdottir et al.31 This negative perception is unlikely to have softened with the publication in the Lancet of the limited effectiveness of long-term donepezil treatment for patients with Alzheimer's disease.32
Nevertheless, the intellectual and humanitarian arguments for early recognition of dementia and systematic organization of care are powerful, leading to the conclusion that health services should strive to overcome the low status of dementia as a clinical condition, the limited skills and nihilism of professionals, and the collusion of families that act as barriers to earlier diagnosis.33 Promoting shared care in dementia may reduce the nihilistic tendencies within general practice, simply by offering therapeutic interventions (both pharmacological and psychosocial) that can be used in common between generalists and specialists.
Limitations of the study: All qualitative analysis is a process of reduction and it is recognized that this can compromise the totality of the qualitative data.34 We attempted to offset this bias by having the data analysed by three individuals from different disciplines, with an iterative approach to compare themes with text. We were not able to verify whether shared care protocols were ostensibly operational, or simply in development, and we are not always able to say consistently and with certainty whether respondents were speaking from experience, or in anticipation of shared care arrangements, except around the core issue of resources. However, there are some clear indications in some responses that de facto shared care arrangements were in place in some areas. Given both the extent of nihilistic thinking and the general underdevelopment of dementia care described in the background to this paper we believe it is reasonable to believe that shared care protocols were in the process of development, rather than reality, in most places. Those who participated in the study may not be representative of their professions, but the similarities between our findings and those from another study comparing GPs from different urban and rural areas35 suggests that our sample is not atypical. The limited representation obtained from professionals working in rural areas may mean that our findings do not necessarily apply to services in such areas. Our findings reflect the current realities of health policy and practice in England, and may not apply to different health care systems. However, the obstacles to recognition of and response to dementia are found across Europe, despite variation in systems, and we believe the main findings will be recognized by practitioners in other countries. The national significance is that the UK National Health Service is ahead of other services in promoting systematic multidisciplinary management of dementia syndromes, across the primary/secondary care divide.
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Conclusions |
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TopAbstractBackgroundParticipants and methodsResultsDiscussionConclusionsDeclarationReferences |
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What are the necessary and sufficient conditions for shared care of patients with dementia? Those now seeking to create working shared care protocols for dementia syndromes will need to dissect layered obstacles if they wish to change clinical practice, first by demonstrating that something can be done to ameliorate the problems of dementia, then by putting risks into perspective, before addressing the complex issues of competence. The core issue is the availability of services that respond effectively to the needs of patients and professionals.
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Declaration |
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Funding: this research was supported by an unrestricted educational grant from Eisai Ltd.
Conflicts of interest: None declared
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Acknowledgments |
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We thank the GPs and specialist doctors and nurses who participated in this study.
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Notes |
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Iliffe S, Wilcock J and Haworth D. Obstacles to Shared Care for Patients with Dementia: A qualitative study. Family Practice 2006; 23: 353–362
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