Description of the condition
Dementia is a chronic, progressive syndrome that manifests itself as a conglomerate of deficits in multiple domains of higher cognitive functions (Boustani 2003; NICE 2006). The typical clinical presentation of dementia is impairment of memory, accompanied by at least one of the following cognitive disturbances: aphasia, apraxia, agnosia, and deficiencies in executive functioning (DSM IV; van Hout 2007). These impairments must represent a decline from a baseline level of normal functioning and be severe enough to have a negative impact on an individual's social or occupational performance (DSM IV).
There are several subtypes of dementia, which result from different underlying pathological processes and differ in their typical manifestations and prognosis (Iliffe 2009). This, in turn, will inform the treatment approach (Iliffe 2009). In clinical practice, the three more common subtypes of dementia are Alzheimer's disease (AD), which accounts for approximately 40% of dementia cases, and vascular dementia (VD) and dementia with Lewy bodies (DLB), each accounting for approximately 25% (Boustani 2003; Iliffe 2009). Both AD and VD can coexist in what is known as mixed dementia, the prevalence of which is greater than originally thought (Alzheimer's Association). Although the exact prevalence of mixed dementia is not known, some autopsy series estimate that vascular pathology coexists in approximately 24 to 28% of cases of AD (Langa 2004). Certain types of dementia can follow an atypical pattern of neuropsychological deterioration in which memory impairment is not the most salient feature (Galton 2000).
Dementia imposes a burden on patients, their families, and society. For patients, dementia leads to difficulty in conducting a range of occupational, social, and (ultimately) personal routine activities; increased care dependency; increased likelihood of institutionalisation; and reduced life expectancy (Chengxuan 2007; Robinson 2009). The next of kin of people with dementia experience anxiety and depression (Boustani 2003). From a public health perspective, dementia contributes 11.2% of all years lived with disability; higher than the contribution from any other single clinical condition (Iliffe 2009; Koch 2010). Its socioeconomic impact is also considerable; dementia-associated costs are currently estimated to be in the order of GBP 17 billion in the UK (Koch 2010), and USD 100 billion in the US (Boustani 2003).
Dementia is among the most common conditions in elderly people, with its prevalence rising exponentially from 1.5% in people aged 60 to 69 years to more than 40% in people aged 85 years or older (Kiejna 2010). Its incidence increases with age (Chengxuan 2007; Ferri 2005). In the US, the estimated incidence of AD is 53 cases per 1000 people aged 65 to 74 years, increasing to 170 cases per 1000 people aged 75 to 84 years and 231 cases per 1000 people aged 85 years and over (Alzheimer's Association 2012). Trends in population ageing have made dementia one of the major public health priorities worldwide. Ferri 2005 estimated the total number of people living with dementia worldwide at 24 million; as the world population ages, this number could double to 42 million by 2020 and reach 81 million by 2040.
The exponential increase in the number of people with dementia raises concerns regarding their accurate and timely detection and diagnosis. Non-recognition can range from 50% to more than 75% depending on the setting (Bamford 2007; Borson 2006; Boustani 2003); and it becomes particularly evident when clinicians are confronted with atypical cases or with people in the early stages of the disease (i.e. those with mild cognitive impairments) (Galton 2000; Iliffe 2009; Koch 2010; van Hout 2007). Non-recognition and delays in diagnosis can lead to patients and their next of kin not being able to access timely and optimal pharmacological treatment and psychosocial support (Downs 2006).
General practitioners are, in most countries, the first point of contact for people with dementia (Downs 1996; Downs 2006; van Hout 2007). In the primary care setting, the evidence has shown that early recognition of dementia is limited (van Hout 2007). In the UK, diagnosis takes between 18 and 30 months (Iliffe 2009). Physicians in secondary care are usually more familiar with the early signs of cognitive deterioration (Phung 2010). In this setting, countries such as Denmark, the UK, and the US have detection rates of approximately 80% or more.
A number of barriers delay prompt and accurate diagnosis and management of people with dementia. In their systematic review, Koch 2010 grouped these barriers into three broad categories: (1) system factors; (2) patient or societal factors; and (3) factors related to the doctor involved. The first two groups cover issues such as the stigma associated with a diagnosis of dementia; delayed presentation of people to healthcare services; and constraints on physicians, including insufficient consultation time and inadequate financial remuneration; and the lack of support for patients, carers and physicians once the diagnosis is made (Borson 2006; Chemali 2012; Iliffe 2009; Koch 2010). In view of the rapidly increasing number of people with dementia worldwide, we need to establish strategies to overcome these obstacles and change the way in which health services are organised and delivered.
Factors related to the treating physicians' attitudes, particularly in primary care, include the uncertainties in reaching and disclosing a diagnosis of dementia; particularly in the early stages when dementia syndromes often follow an insidious and variable course. As a result, the detection of mild cognitive impairment and early dementia can be problematic (Iliffe 2009). Even when doctors are able to reach a diagnosis of dementia, they are often concerned about the risks associated with disclosing the diagnosis at "the wrong place or the wrong time" (Koch 2010; Pimlott 2009). Additional factors related to the treating physicians include lack of sufficient knowledge or experience, particularly in primary care, and the widespread therapeutic nihilistic views (Koch 2010; Koch 2011; van Hout 2007). The latter refers to the view that diagnosis is not worthwhile due to a lack of available treatments or other benefits of diagnosis. Preliminary evidence seems to suggest that educational interventions for clinicians and the introduction of evidence-based practice protocols may result in improvements in the detection, diagnosis, and management of people with cognitive impairment and dementia (Downs 2006; Iliffe 2009).
Description of the intervention
Educational interventions in this context are designed to change physicians' behaviour and attitudes in relation to cognitive impairment and dementia (Koch 2011). These interventions utilise a wide range of methods and techniques, including: practice-based workshops, use of decision-support software or clinical practice guidelines, electronic tutorials, and facilitated small group learning (Downs 2006; van Hout 2007). Interventions using blended learning methods are increasingly becoming more popular. These methods consist of a combination of traditional teaching methods with e-learning tools and other learning media (Downs 2006).
to improve clinicians' knowledge acquisition and clinical performance in relation to the evaluation, diagnosis, and management of people with cognitive impairment and dementia;
to modify clinicians' attitudes and perceptions about dementia and the quality of the care and support currently available to patients and their next of kin;
to stimulate a more active approach to case finding in both primary and secondary care settings; and
to improve clinicians' skills in the use of screening tests and neuropsychological diagnostic tools.
How the intervention might work
A key element in the development of educational interventions is the careful consideration of the value of each of the theories underpinning them (Wilcock 2002). In medical education, a theory may (1) lead to a better understanding of how clinicians learn and incorporate change; (2) inform the planning and implementation of educational programmes; and (3) facilitate and enhance learners' natural learning processes, competence, and problem-solving skills (Mann 2004; Wilcock 2002). Scientists typically group theories of adult learning depending on their underlying principles and assumptions about learning; and they may fall in any of these widely accepted groups: (1) behaviourist, (2) cognitivist, (3) social learning, (4) humanist, and (5) constructivist (Mann 2004). Behaviourist theories, for example, are based on the assumption that the environment determines an individual's overt behaviour; thus, educational interventions based on behaviourist theories may focus on feedback as a way of accelerating and increasing the speed of learning (Mann 2004). A clinical practitioner usually obtains multisource feedback, receiving information about their performance on a number of competencies from their supervisors, colleagues, and patients (Mann 2004). This feedback will help learners to achieve their current objectives and to increase their progress towards any subsequent goals they set for themselves.
Medical educational interventions can use a wide range of techniques. Peer reflection is encouraged using practice-based workshops about real cases through case discussion in small, multidisciplinary groups. Such workshops may involve electronic tutorials; using decision support software or clinical practice guidelines, or both, applied to real time and real case learning. These interventions could potentially improve the detection rate and management of people with early or mild cognitive impairment by assisting clinical reasoning and care planning in real time (Downs 2006; Koch 2011; van Hout 2007). In order to encourage clinicians to reflect on their knowledge and past experience, particularly in relation to difficult and complex cases, electronic tutorials are used (Downs 2006). Facilitated small group sessions can give clinicians the opportunity to identify individual learning needs, together with their facilitator. Both electronic tutorials and small group sessions could potentially improve clinicians' knowledge by increasing their motivation for self directed learning (Downs 2006; Koch 2011). The effectiveness of these methods, however, can vary due to potential differences in learning styles and diagnosing methods between primary and secondary care clinicians.
Potential benefits and adverse effects of the intervention
Educational interventions can improve clinicians' skills in detecting and diagnosing cognitive impairment and dementia; this could in turn lead to earlier disclosure of the diagnosis to patients and their next of kin. The early detection of dementia will enable patients and their carers to:
adjust emotionally and practically to the diagnosis;
initiate early treatment (which can delay admission to nursing homes and time to dependency);
prolong the early phase of the condition;
discuss future care, safety, and financial planning;
formulate advanced directives;
promote awareness of relevant support organisations;
help relieve the psychological distress experienced by next of kin and carers; and
However, some scientists argue that early disclosure may have a negative impact not only on the person receiving the diagnosis and their family and friends, but also on healthcare services (Iliffe 2009; Mattsson 2010). This is particularly evident when we consider: (1) the current paucity of validated and approved disease-modifying therapies for dementia (Mattsson 2010); and (2) the amount of support that people with dementia and their carers need in order to maintain a certain degree of functional independence and dignity (Bond 2005). Both Iliffe 2009 and Mattsson 2010 have discussed some of the potential drawbacks associated with early detection of dementia. People with dementia who are diagnosed early can experience greater restriction of their daily activities; increased preoccupation with their condition; prolonged follow-up; and stigmatisation, resulting in feelings of humiliation, hopelessness, agony, and despair. For next of kin and carers, an early diagnosis of dementia can translate into hyper-vigilance for symptoms. In addition, their worries for their own health can increase the demand for pre-symptomatic testing. False-positive diagnoses can cause unnecessary distress to both patients and their next of kin, and erode trust in the clinician's professional ability. Under-recognition of co-morbidities such as depression can occur, as several behaviours are misclassified as cognitive changes that are thought to be part of the dementia phenotype. The latter can pose additional pressure on specialist services receiving an increased number of referrals. Finally, from a legal stand point, a diagnosis of dementia can significantly affect insurance premiums, as well as rights such as that to hold a driver's license. However, if educational strategies focus on improving management of dementia, not only detection and diagnosis, some of the potential drawbacks may be minimised.
Why it is important to do this review
The need to improve the early detection and the evidence-based management of people with cognitive impairment and dementia is the focal point of a number of national strategies and clinical guidelines in countries around the world. For example, in the UK, the National Service Framework for Older People, the National Dementia Strategy (Koch 2011), and the Dementia Challenge launched by the Prime Minister in March 2012 highlighted this need.
A number of researchers have attempted to evaluate the educational interventions designed to improve the detection and management of dementia, particularly in primary care (Borson 2006; Downs 2006; Koch 2011; Valcour 2000; van Hout 2007). However, if we are to draw firm conclusions about the effectiveness of these interventions, we must evaluate this body of literature systematically. We were able to find only one systematic review that addresses this research question (Koch 2011). However, the review in question has employed a rapid appraisal approach, thus excluding many studies that were not readily accessible or that had been published in a language other than English. Moreover, the performance of secondary care clinicians in relation to the detection, diagnosis, and management of people with dementia has rarely been studied. A systematic review in this area is, therefore, warranted to address these methodological limitations and gaps and help to inform future research.