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Dementia,2002 1(1): 11-23
Dementia diagnosis and management in primary
care: developing and testing educational models
ABSTRACT
Dementia presents a challenge for primary care and the advent of new therapeutic options has
highlighted the need to improve its detection so that early decisions about medication use can
be made. Efforts at earlier diagnosis should be targeted at primary care as the gateway to
specialist health and social services. There is, however, evidence that dementia remains
under-detected and sub-optimally managed in general practice throughout the world. This
paper reviews the obstacles to early recognition of dementia and the factors causing suboptimal management in the community, and discusses educational approaches to enhancing
professional skills in the recognition of and response to dementia.
Three educational
interventions with different characteristics and methods of delivery are described.
KEY WORDS dementia, early diagnosis, adult learning, problem based learning, reflective
practice
Iliffe Steve*, Wilcock Jane*, Austin Tony**, Walters Kate*, Rait Greta*, Turner Stephen***, Bryans
Michelle*** & Downs Murna****
*Department of Primary Care & Population Sciences, RFUCLMS
** Centre for Health Informatics & Multiprofessional Education, UCL
*** Centre for Social Research on Dementia, Dept. of Applied Social Science, University of Stirling
**** Bradford Dementia Group, School of Health Studies, University of Bradford
Correspondence to: Dr Steve Iliffe, Department of Primary Care & Population Sciences, Royal Free & UCL
Medical School, Royal Free Campus, Rowland Hill St., London NW3 2PF Tel: 0207 830 2393 Fax: 0207 830
2339 email s.iliffe@pcps.ucl.ac.uk
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INTRODUCTION
Dementia presents a challenge for primary care, with its’ rising prevalence, often insidious
onset, difficulties in early diagnosis and a generally unremitting and progressive course. The
advent of new therapeutic options have highlighted the need to improve detection and
management of people with dementia, so that early decisions about medication use can be
made. Early diagnosis is imperative, allowing for individual patients and their carers to be
informed and appropriate management instigated, allows planning for the future, and for
preliminary introduction to appropriate agencies and support networks. These can relieve the
significant psychological distress that carers may experience (Levin, Sinclair &Gorbach,
1989), and knowledge of the availability of medical and psycho-social support may even
improve morale without support being called upon (Briggs, 1993).
Efforts at earlier diagnosis should be targeted at primary care, as the first point of contact for
most individuals and their carers, and as the gateway to specialist health and social services.
There is, however, evidence that dementia remains under-detected and sub-optimally
managed in general practice (O'Connor, Pollitt, Hyde, Reiss, Roth, 1988; Iliffe, Booroff,
Gallivan, Goldenberg, Morgan, Haines, 1990). The situation may be improving because of
(among other factors) the work of Alzheimer Disease Societies and similar bodies in raising
public and professional awareness, but all experience suggests that significant obstacles
remain. Although there is much enthusiasm for developing educational programmes for
primary care there has been no review of the educational theory and practice that could
underpin such programmes. This paper describes how a multi-disciplinary research team are
trying to answer the question: How can we develop and implement an evidence-based
educational process to change the practice of primary care practitioners of different
disciplines in the recognition of and response to dementia? We will review barriers to
recognising dementia, what learning theory tells us about learning about dementia, describe
the problems of current approaches, and outline different educational methods that can be
tested in experimental studies.
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BARRIERS TO RECOGNITION OF DEMENTIA
What are the difficulties with diagnosing and managing dementia in the community? A broad
range of factors are likely to be important (De Lepeleire & Heyrman, 1999; Iliffe, Walters,
Rait, 2000), which are summarised in table 1.
Table 1: Factors contributing to under diagnosis and sub-optimal management of
dementia
1.
LOW INCIDENCE AND SCIENCE BIAS The low incidence of
dementia offers limited opportunities to learn from experience. A focus in
the scientific literature (particularly in systematic reviews) upon
prescribing and preventive medicine, and only on selected chronic
diseases (like asthma and diabetes)
2.
PATIENT FACTORS delay in self-referral to primary care, due to
stigma, fatalistic attitudes, etc.
3.
PRACTITIONER FACTORS
psycho-socio-biological disorder.
the complexity of dementia as a
¾ the absence of certainty factors, like diagnostic tests or monitoring
measures equivalent to blood pressure, glycosylated haemoglobin or peak
flow rate.
¾ the limited nature of professional training in disorders of later life in
the current generations of general practitioners
¾ the limited qualitative research evidence available about barriers to
considering, diagnosing and treating dementia.
4.
AGE BIASES The relative neglect of research on health and illness in
older people, and the research bias towards physical rather than mental
health issues.
5.
SYSTEM ISSUES AND SERVICE FACTORS Lack of consensus of
an assessment protocol. The discrepancies and lack of comprehensive
services between localities
Incidence, prevalence and a Science bias A general practitioner working in an area of
average demography with a list of 2000 patients will see one or two new cases of dementia a
year, and have 10 or 12 existing cases. This low incidence and prevalence makes learning
from experience difficult, particularly given the very variable presentation of the dementias.
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Patient and Carer Factors GPs may not recognise patients with early dementia for multiple
and complex reasons. Most notably related to the variable expression of the disease process in
individuals, and the variety of ways in which carers and people with dementia compensate for
changes in cognitive function and ability (Bair, 1998). Individuals with cognitive impairment
may view symptoms such as memory loss as normal for their age (Pollitt, 1996), and close
carers may also accept some of the early characteristics of dementia, like cognitive changes,
functional loss or emotional lability, as part of ageing. Carers may compensate for an
affected individual’s loss of function with the result that early changes may be ignored until
they impact on the household economy (or household functioning) significantly, or may not
tackle the issue out of respect for their spouse or parent (Antonelli Incalzi, Marra, Gemma,
Capparella, Carbonin, 1992). Those from higher socio-economic groups are more likely to
seek medical attention earlier, and cultural background may influence early detection (Pollitt,
1996). The result of all these interactions is often an acute presentation of dementia with
‘confusion’ at moments of crisis, for example when a spouse or carer dies or becomes
disabled. Nevertheless, carers may be the first to reach the diagnosis (O'Connor, Pollitt,
Brook, Reiss, 1989), even if they do not voice it or act upon it, so informant histories are
crucial to investigating any suspicion of dementia that a general practitioner may have.
Practitioner factors A range of factors related to characteristics of primary care militate
against the early identification of dementia by primary health care professionals. Many
diagnoses of chronic illness in primary care are made on the basis of more than one
consultation, using a hypothetico-deductive diagnostic process. This dynamic approach
allows the GP to generate and test hypotheses and investigate over time. The practitioner
requires an index of suspicion to construct a diagnosis, which is frequently ‘triggered’ by a
symptom within the patient’s story. Therefore, if practice staff are unaware of the early signs
of dementia they are not likely to contemplate the diagnosis. Similarly, if primary care
nursing staff are unaware of the early signs, they are not likely to report a suspicion of
dementia to the patient’s GP. For example, general practitioners tend to consider memory loss
as the cardinal symptom of dementia, although loss of function rather than memory loss may
be the earliest change (De Lepeleire, Heyman, Buntinx, 1998; De Lepeleire, Heyman, Baro,
Buntinx, Lausy, 1994). The use of screening instruments cannot compensate for a lack in the
specific diagnostic skills that are required to confidently diagnose dementia. Even when GPs
use tests to measure cognitive function, it does not necessarily alter the management of cases
identified (Iliffe, Mitchley, Gould, Haines, 1991).
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Age Bias Dementia is a complex syndrome that occurs at an age when other morbidity may
be present. The absence of a definitive test can make general practitioners feel less confident
in the accuracy of early diagnosis. They may also be concerned about the implications to
patients and families of early diagnosis, or be especially concerned about the risk of ‘false
positive’ diagnoses in a climate which increasingly encourages early disclosure, and when a
wrong diagnosis may impact significantly on patient care. This is illustrated by a prevalence
study of dementia in which the sensitivity of general practitioners’ diagnoses rose
significantly when they used a broader label of cognitive impairment (Eefsting, Boersma, Van
den Brink, Van Tilburg, 1996). Diagnostic thinking may also be inhibited by the inexorable
course of the dementias, and there is some evidence that practitioners may respond to the
possibility of dementia as a diagnosis with disbelief, denial, apprehension, and fear,
particularly if they have known their patient for some time (De Lepeleire et al, 1994).
System Issues and Service Factors There is no consensus on the optimum methods for
assessing dementia in primary care (Toner, 1992) and it has been suggested that a primary
care specific assessment is required (De Lepeleire et al, 1998) although there is no evidence
to support whole population screening for cognitive impairment with the tools currently
available. Similarly there is a lack of knowledge about the most effective ways to manage
people with dementia in primary care, particularly how to integrate services across budgets
and specialities, and this may have a negative inhibitory effect on the willingness of
practitioners to recognise dementia.
OVERCOMING BARRIERS: AN EDUCATIONAL AGENDA
The lessons may be clear, but how can they best be learned? What needs to be learned about
complex management issues like medication use, challenging behaviour and legal
responsibilities? An educational agenda has been outlined (Downs, 1996), but its
implications for training programmes have not yet been fully investigated and tested. A
recent King’s Fund report on the future of GP education states “continuing education must be
relevant and engaging, and it must meet their needs: there must be something in it for them,
and it must take account of their maturity” (Gillam, Eversley, Snell, Wallace, 1999), which
for us summarise the need to adopt an adult education approach rather than the more common
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didactic approach that emphasises the inferiority of generalist experience and the importance
of specialist expertise. There appear to be six important components to any educational
process that will change professional practice in a domain as complex as dementia.
1. Practitioners must identify their own learning needs, and make the first step towards
seeking knowledge (Grant, Stanton, Flood, Mack, Waring, 1998). Such awareness of
learning needs and motivation to update skills and knowledge is linked to an estimation of
expected benefit, both to the practitioners and their patients (Willis & Dubin, 1990), which
itself depends on recognition of under-performance or lack of knowledge. This approach is
the opposite of the type of education in which practitioners opt for topics with which they
feel comfortable, and about which they already know much. Knowles’ principles of
andragogy state that adult learners should be involved in diagnosing their own learning
needs, formulating their own objectives, identifying resources and evaluating their learning
(Knowles, 1980).
2. Learning should be about enhancing performance, emphasising both the resolution of
clinical concerns and better outcomes for patients (Nowlem, 1988), and valuing the
application of knowledge more than its acquisition. In the case of the difficult, complex
and sometimes ill-defined problems encountered with dementia, such learning can be
viewed as the essence of professionalism (Eraut, 2000).
3. Learning needs to be integrated with practice, in terms of convenience, relevance,
individualisation, self-assessment, interest, speculation about controversial areas and
systematic coverage of the issues (Harden & Laidlaw, 1992). Kolb’s (1984) experiential
learning theory concludes that learning is best achieved by relating concrete practice to
conceptual models.
4. Learning should focus on solving problems (Brookfield, 1986), and explicitly recognise
complexities, uncertainties and conflicting values (Cervero, 1988). The more complex the
problems to solve, the more realistic can practitioners’ “illness scripts” (templates for
disease processes) (Feltovitch & Barrow, 1984) become, allowing the accurate allocation
of cases to scripts (through pattern recognition) and the enrichment of the scripts as case
memory increases with experience. Empirical evidence supports this model of learning, in
that interventions that are multifaceted and that target different barriers to change have
been shown to be more effective than single interventions (NHS, 1999). Approaches that
emphasise simple tasks, like using a brief screening instrument for recognition of cognitive
impairment, are unlikely to make much difference to practice.
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5. Peers and colleagues can be the most effective educators (Nowlem, 1988), especially if
they use a coaching rather than a didactic approach (Schon, 1987). However, there may be
limits on who is included as peer or colleague, given the lack of support for multiprofessional learning. General practitioners seem reluctant to learn with other
professionals, although willing to learn from them (Grant & Stanton, 2000).
6. Learning requires a mixture of formal (didactic) and informal (experiential) styles (Durno
& Gill, 1974; Reedy, 1979), corresponding to a mix of propositional (factual) and
experiential knowledge (Eraut, 2000).
These components of effective professional education suggest that no simple educational
package will work, and that a mixture of approaches, with a significant capacity to tailor and
individualise styles and methods, may be necessary. For curriculum planners the questions are
how much formal and informal learning is best, how far can inter-professional learning
develop given that there may be wide differences in baseline knowledge between disciplines,
how much complexity is possible in a clinical domain where knowledge may be very limited,
and where and by what means will practitioners learn most efficiently and effectively?
For dementia there is some empirical evidence available to guide curriculum development.
Improving professional awareness in primary care about dementia can be achieved through
educational interventions delivering evidence-based guidelines. An example of this is the
‘Action on Alzheimer’s’ programme, which used the existing evidence base as a core
curriculum for a nation-wide programme of one day workshops on dementia diagnosis and
management, in 1997. The programme was organised around multidisciplinary working
groups undertaking problem-solving tasks using scenarios of patients with possible or actual
dementia, and was successful in recruiting large numbers of general practitioners and other
primary care staff (Iliffe, Eden, Downs, Rae, 1999). In effect, the ‘Action on Alzheimer’s’
programme tested the acceptability and feasibility of multidisciplinary training in dementia
care, using a mixture of formal and informal learning styles and a core method of problemsolving.
However, we do not yet know if this approach actually changes clinical practice. Some
relevant studies concerning diagnosis or prescribing have demonstrated improved outcomes
following educational interventions (Pond, Mant, Kehoe, Hewitt, Brodaty, 1994; Yeo,
Deburgh, Letton, Shaw, Donnelly, Swinburn, Phillips, Bridgeswebb, Mant, 1994), but they
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can be criticised on methodological grounds and may not give an accurate picture of what is
possible in normal care settings. Barriers to and constraints on change when implementing
evidence exist at environmental and personal levels, as well as in professional education,
service organisation and wider society (Haines & Donald, 1998). Many factors may affect
evidence uptake and implementation, but the interplay between evidence, the context of
practice and facilitation of learning around case studies appears to be a potentially powerful
lever for change (Kitson, Harvey, McCormack, 1998). Case studies and case series have been
overshadowed by the emergence of evidence-based medicine and its preference for rigorous
experimentation, but may be the key to facilitating evidence-based practice (Van den
Broucke, 1999). Self-directed learning, involving the learner as an active participant, is the
educational strategy that has been suggested is most likely to promote ‘life-long learning’ and
encourage doctors to respond to the changing needs of their patients (Spencer & Jordan,
1999).
We know what to do, even if we are unsure how to do it. Guidelines summarise and outline
the evidence for the practitioner, and several guidelines for the diagnosis and management of
dementia in primary care have been published (Eccles, Clarke, Livingston, Freemantle,
Mason, 1998; Alzheimer's Disease Society, 1995; Scottish Intercollegiate guidelines network,
1998). Current evidence-based guidelines have been criticised for being out of date and
excluding recent drug information (Matthews, Wilkinson, Holmes, 1999), for excluding
qualitative research, omitting the differential diagnosis of Alzheimer’s disease and vascular
dementia (Eastley, Haworth, Wilcock, Sharp, 1999), and for not explaining the difference
between - ‘lack of effectiveness’ and ‘lack of evidence of effectiveness’. Nevertheless, we
have a body of evidence, however incomplete. How can we implement an educational process
using such knowledge, to change the practice of primary care practitioners of different
disciplines in the recognition of and response to dementia?
DEVELOPING AN EDUCATIONAL PROGRAMME
Our method has been to take three approaches from within the body of knowledge about
optimal learning styles and develop educational tools for each, all based on a common
curriculum derived from the evidence base. Whilst all three approaches stem from the same
need to resolve clinical problems in ways that are compatible with the demands of routine
clinical practice, each emphasises different aspects of learning. The options are:
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1. COMPUTER DECISION SUPPORT Learning driven by real cases, using a computer
decision support system (CDSS) to prompt and assist clinical reasoning and care planning
in real clinical time. The CDSS can be invoked by the practitioner as needed, but will also
prompt thinking about dementia when relevant clinical terms (e.g. confusion, wandering)
are entered onto the clinical record in EMIS. In the Scottish equivalent, the practitioner is
prompted into thinking about dementia by the visual presence of a tab in the GPASS
consulting screen entitled ‘Dementia DSS’ which makes the CDSS available for use for all
patients aged 75 and over. In both systems it functions as a set of illness scripts within the
patient record, and also as a source of propositional knowledge about, for example,
medication use or causes of behaviour disturbance.
2. SMALL GROUP PROBLEM BASED LEARNING Learning from case discussion in
small, multi-disciplinary groups. Learning from the discussion of problematic cases may
allow rapid modification of illness scripts, especially when different disciplines offer
different perspectives, and when novices can draw upon the experiences of expert
practitioners and each role is emphasised as important.
3. ELECTRONIC TUTORIAL Learning from case analysis, with the emphasis on reflecting
on knowledge and revisiting particularly difficult and complex clinical problems, using an
electronic tutorial on a CD-ROM. The tutorial is an electronic book, with an indexing
system that allows easy access to different themes, and hypertext links that allow the
reader to move easily from one subject to another. The tutorial contains the same cases
used in the small groups, and readers can work their way through these cases, answering
questions to check that they are learning. This technology was chosen because it allows
flexible, non-linear reading of information combined with both interactive testing of
judgements and observation of others in consultations (using video clips)
The different approaches have some characteristics in common (e.g. all are based on problemsolving as a method of learning) but also permit different combinations of educational
techniques. For example, learning from peers' experience can occur directly in small group
problem based learning, indirectly through observation of others, in a video clip in the
electronic tutorial, and distantly with the computer decision support only in that it expresses
expert opinion. In table 2 we compare and contrast some of the key educational characteristics
of these three approaches, using themes derived from the analysis on pages 6 and 7, in
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particular from the components of adult learning described by Harden and Laidlaw (Harden &
Laidlaw, 1992). These themes are: convenience; relevance; tailoring; self-assessment; level of
engagement; speculation about controversy; obsolescence; systematic coverage of issues; and
learner motivation. The development of the curriculum from the evidence base, and its
customisation for each approach is described elsewhere (Wilcock et al, 2003).
Table 2 Characteristics of the educational interventions
Educational characteristic
Small groups workshops
CD-ROM tutorial
Computer decision support
Convenience
Practice based setting
Practitioner derived
setting
Timing decided by
practitioner
Use during or after
consultations controlled by
practitioner
Case-based
Uses experiences of other
practitioners, including
specialists
Non-linear pathways
allow individual to exert
selective and variable use
of material
Self-testing available
which allows revision of
topics
Case-driven
Can be used during
consultations
Designed for visual
impact, with video clips
and positive
reinforcements for tests
of knowledge
In-depth exploration in
tutorial content, but can
be avoided by the
practitioner
Web pages readily
updateable
Tutorial pages reflect
work book content, but
practitioner does not need
to work through all pages
High: user controlled
technology
Case driven, customisable to
patient
Timing decided by
practice
Relevance
Individualisation to
practitioners' needs
Self-assessment
Level of engagement
Case-based
Uses group members'
own experience
Learning experience can
be experiential for the
group and individual
Group discussion can
focus on gaps in
knowledge
Pace of learning variable
New material arises in
group discussion
Speculation permitted
(recognition of grey areas
and controversies)
Actively encouraged in
group work
Level of obsolescence
Curriculum can be readily
updated
Groups work through a
standard curriculum, in a
work book
Systematic
Motivational level
Low: attendance at group
is minimum requirement
Individualised to patient's
circumstances rather than to
practitioners' needs
System prompts for required
information not yet
documented
Limited expression in text
advice on-screen
Protocol script updateable
All themes in work book
represented in a group of
consultation templates, these
can be bypassed
High: user must incorporate
CDSS into consultations
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These three approaches to learning are now being tested in a randomised controlled
trial funded by the Alzheimer's Society in 40 practices in the rural area around
Stirling and in London, with a control group of practices providing usual care and
receiving no educational intervention. Recognition of dementia, and concordance
with guidelines in its management, are being measured before and after the
educational interventions by document analysis of medical records. Carer satisfaction
is also being measured before and after the educational interventions.
CONCLUSION
Primary care is the focal point for early detection and co-ordination of care for people
with dementia. A range of barriers has been identified to delivering the highest quality
dementia care. An educational agenda that is practical, evidence-based and relevant
to both medical and nursing primary care practitioners is needed to address these
barriers. Case-based learning led by the practitioners themselves appears to be the
best way to deliver this agenda, but it is not yet clear which approaches to knowledge
acquisition about dementia are most effective in primary care settings. Does effective
education about dementia depend on the exchange of experiences and a collective
approach to problem-solving that can occur in a well facilitated small group, or are
more individual learning styles equally effective, whether in the form of a tutorial or
decision support for use in the consultation? The randomised trial of different
educational approaches currently underway will help to answer these questions.
ACKNOWLDEGMENTS
The project management group comprising the following members in addition to the authors: Dr J
Keady, School of Nursing and Midwifery Studies, Faculty of health Studies, University of Wales,
Bangor; Ms E Levin, National Institute for Social Work, London; Professor R O’Carroll, School of
Psychology, University of St Andrews;
Dr R Simpson, MSP
We thank Martin Campbell of Campbell Software (www.campbellsoftware.co.uk) for writing the API
module and translating the CDSS into GPASS.
Funding: The study has been funded by the Dykes Award from the Alzheimer’s Society.
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