The diagnostic burden of dementia for GPs
Abstract
High-quality in-home primary healthcare services are pivotal for people with dementia and their families to avoid inappropriate hospital admissions and premature nursing home placement, which are associated with worsened quality of life of both the person with dementia and his family and financial burden.
Keywords
- Behavioural and psychological disorders
- case-finding
- models of primary care
- dementia
- family caregiver
- cognitive screening tests
1. Introduction
Globally, the number of persons living with dementia (PWD) is projected to increase exponentially as population ages, becoming one of the most serious human, social, and economic burdens of this century. According to the World Alzheimer Report 2015 [1] it is estimated that 46.8 million people around the world live with dementia now and that this number will almost double every 20 years. At present, the estimated global incidence of dementia is 9.9 million new cases, implying one new case every 3.2 seconds. The most recent population based prevalence study in Italy [2] shows that one quarter of 80+ year old people have dementia, most of them in the advanced stages of the disease with prevalence rates that continue to rise gradually even in extreme ages: 15.7% in people aged 80–84 years to 52.8% and 65.9% in people aged 95–99 and in centenarians, respectively [2]. Also the incidence rates of dementia per 100 person-years do not level off but increase gradually ranging from 6 person-years at 80–84 years to 20–21 person-years at 95–99 years (Lucca U et al., unpublished data).
Dementia is defined as a progressive major neurocognitive syndromal (group of signs/symptoms) disorder characterised by neuropsychological impairments, reduced ability to perform activities in everyday life and behavioural and psychological symptoms of dementia (BPSD). These deficits cause significant impairment in social or occupational functioning and represent a significant decline from a previous level of functioning [3].
The progression of the disease greatly differs from one type to another, but most types of dementia are characterised by an early loss of declarative memory and progressive deficits in other cognitive domains (
The increasing number of PWD will lead to a rising demand for informal and formal care services in order to attend to the needs of this group of people. The possibility of getting support depends on numerous interrelated factors such as patients’ and carers’ (socio-economic) characteristics, care setting, provision of services, availability of healthcare providers and the degree of integration among care networks. Some research suggests that co-habitant family caregivers (CGs) could be replacing formal support services provided that they accept supervision or advice from social and primary healthcare services. Unfortunately, many CGs do not connect their relative with social and healthcare professionals, which may constitute a disadvantage for both of them [5]. There are different reasons why CGs do not search formal support among which the principal are stigma surrounding dementia, CGs’ perceived lack of need and support, PWD’s refusal to accept help, service characteristics and lack of knowledge about service availability [6, 7]. All these findings show PWD as a vulnerable group. Developing interventions, such as case/care management which allow the coordination between different agents involved in community care might offer the possibility necessary to satisfy the needs of PWD and their CGs in the primary care context [8].
Obstacles to detecting dementia at the primary care level include limited time resources [9–13], insufficient expertise, flaw in skill set, fear of making an erroneous diagnosis, unsatisfactory reimbursement, and deficiencies in the coordination between family physicians (henceforth called general practitioners (GPs)) and community services [14–18].
Not surprisingly, two-thirds of all dementia and 91% of incipient dementia remain undetected in the primary care setting around the world. Even when GPs accurately recognise dementia, the quality of management of the disease after the diagnosis frequently appears suboptimal. Initiation of dementia-specific drug treatment [19], assessment and management of BPSD, safety issues, side effects of psychotropic drugs and of CGs’ stress and burden [20], coordination of primary healthcare partners [21], implementation of support for PWD and their CGs [22] represent the main challenges for providing quality dementia care by the GPs. Inadequacies in the diagnosis and management of dementia have been found to increase the risk for hospitalisation and nursing home placement contributing substantially to the economic burden of dementia [23].
Different models of care have been designed to help GPs in detecting dementia and in delivering better dementia care. Research in this field has yielded to date mixed results in terms of efficiency and effectiveness [24–28]. In contrast, a collaborative care model in which an interdisciplinary team works with both the PWD and the CG, and which is integrated with a primary care network, improves adherence to dementia care guidelines and reduces BPSD of the PWD and stress and depression of their CGs [29, 30]. Although limited in scope, research suggests that including geriatric specialists in the detection of dementia increases the rates of screening people for dementia [18]. In a recent exploratory study [31], dementia care was delivered through a system involving three groups of healthcare providers: (a) GPs involved in the primary care network for identification and management of dementia; (b) a geriatric assessment team (a GP who had extensive training in geriatrics and nurses specialised in assessing frail elderly) and (c) community care composed of nurses and other healthcare professionals (e.g., social workers, occupational therapists, psychologists). The geriatric assessment team assisted with the evaluation of the PWD and with client-tailored care planning (exhaustive listing of problems, recommendations, multidomain interventions and follow-up). Community care delivered personal support services to the PWD and their families integrated with the primary care network. Although it was assumed that this current approach to caring for PWD would have resulted in high-quality dementia care, a retrospective analysis of the charts of these three groups of healthcare providers evidenced several gaps and inconsistencies, underscoring the need of further research to assess whether the overall quality of dementia diagnosis and management at the primary care level may be achieved through a collaborative model that integrates different healthcare services [31–33].
2. Early diagnosis and case finding in primary care; the diagnostic burden.
Despite the worldwide increased recognition of the early symptoms of dementia, this disease still remains too often a hidden problem, especially in resource-limited communities. Many family members do not seek help, and GPs seldom come across cases (see below) because loss of memory and other related cognitive functions are thought to be part of an usual cognitive aging process (i.e., ageism) and not a medical (i.e., pathological) condition. Dementia, however, is a significant source of burden both for the PWD and his/her family. Hence, more research on interventions to promote help-seeking behaviour and to improve the diagnostic expertise of non-specialist healthcare providers, is urgently needed. For instance, it is mandatory to compare the accuracy of the clinical evaluations done by these first- and second-level healthcare providers against a standard assessment process for the diagnosis of dementia by a specialist. If it could be shown that a network of non-specialist healthcare providers is able to reliably identify dementia cases in the community and in the primary care setting, then it might deliver simple and effective interventions in these settings with supervision and counselling as needed by the specialists [34].
GPs are usually the first health professionals that either patients or their families contact if concerned about memory decline. However only 60% of the people who meet the diagnostic criteria receive a formal diagnosis of dementia: failure rates have been estimated between 50% and 80% for moderate-to-severe dementia and up to 91% for mild cases. Yet, owing to their long relationship with patients (and their families), GPs are in a favourable and unique position to collect the information needed to define the patient’s cognitive, functional and behavioural profile. This is pivotal not only for the diagnostic process but also for care planning tailored to the needs of the PWD and his/her family and for the assessment of treatment effects. GPs underdiagnose dementia for several reasons; apart from those already mentioned above, there is also the limited availability of guidelines specific for the GP’s practice that might allow to better approach the diagnostic burden of dementia, especially in its early stages [34, 35].
Although general practice is usually the first point of contact for patients with memory problems or other symptoms of dementia, GPs appear reluctant to use brief cognitive tests and to refer patients for early assessment, particularly in disadvantaged older people with functional impairment [36]. On the other hand, there is increasing evidence that people want earlier diagnosis, with younger healthcare professionals perceiving its usefulness and the international guidelines emphasising the importance of early diagnosis [37–40]. In primary care there is a need to develop training in assessment so that clinicians are more aware of dementia to deliver a timely diagnosis [41]. Studies based on a focus-group methodology about practitioners’ knowledge have shown that primary care recognition can be enhanced; however, this does not always result in greater adherence to practice guidelines [42]. Education should also include assessment of GPs’ needs, otherwise facilitation of system change does not improve performance or health outcomes and it is suggested that small group education is important. A ‘whole system’ approach has been advocated to improve self-management of long-term conditions, but interventions have limited impact on patients’ outcomes [43, 44].
Across the European Union more than 50% of PWD never receive a specialist diagnosis or do so only at the late stage of disease or at a time of crisis, despite an growing evidence that early diagnosis and subsequent interdisciplinary intervention are cost-effective [45, 46]. Early diagnosis in dementia within primary care is important as this allows PWD, their CGs and care networks to set up support services and to act proactively for the future, in accordance with the adage of “spend to save”. The North of England Evidence Based Dementia Guideline Development Group states that ‘
A number of
Yet, another recent evidence-based recommendation on
The identification of possible cases of dementia in the primary healthcare setting and in the community needs medical practice-based educational programmes and awareness-raising campaigns. Short informant questionnaires and cognitive tests should be used to confirm these cases. A formal diagnosis of a probable primary progressive dementia at first- or second- healthcare level can be made only after an exhaustive past and present medical review, included drug therapy and alcohol abuse in order to rule out other common (reversible) causes of cognitive impairment and decline [60–69].
Cultural barriers | 1. Absent/limited education during undergraduate or postgraduate training in Medicine 2. Ageism: GPs who attribute cognitive complaints to age; patients or families lacking insight and not referring for assessment |
Clinical variability | Dementia subtypes develop slowly, in years. Many of their early clinical pictures may be insidious due to slight differences with normal ageing. Failure to recognise BPSD, if these are the first signs before obvious memory complaints/disorders or functional impairment. |
Practical issues | Lack of time, financial resources and GP-focussed guidelines |
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3. The collaborative model for dementia in primary care
As outlined above, collaborative care for the treatment of dementia resulted in a significant improvement in the quality of care and in BPSD among primary care patients and their CGs. These improvements were achieved without significantly increasing the use of antipsychotics or sedative-hypnotics [29]. Indeed, BPSD represent a major challenge in the care of PWD. These symptoms, which include a broad range of distressing behaviours and psychological reactions, affect the health and quality of life of both the PWD and his/her CG. BPSD are not simply a manifestation of advanced dementia. For instance, behavioural abnormalities are reported in 35–75% of people with mild cognitive impairment with the most common being depression, apathy, anxiety and irritability [70]. Leaving patients’ BPSD untreated, undertreated or treated improperly has been associated with patients’ excess disability, poor management of comorbid conditions, increased hospitalisation rates, premature institutionalisation, suffering for both the PWD and the CG and substantial increase in financial costs.
Some studies compared the effectiveness of collaborative care management with usual care for older PWD with comorbidity or multimorbidity that is typically found in primary care. The extreme heterogeneity of the targeted population and the fact that this model starts from the perspective of the GP probably explain a major treatment effect on BPSD rather than on the other domains of dementia like cognition and everyday functioning [71, 72].
In the context of collaborative dementia care models (or others models of in-home care services such as
The paucity of research in psychosocial approaches in primary care presumably stems from a poor understanding of the value of psychosocial interventions in community settings [88]. Information provision is seen as a key to dementia care support but this does not appear to be done timely or tailored to the constantly changing needs of PWD and their families. This may be because of the application of a medical management model where a social disability framework for delivering support in primary care is more relevant in guiding dementia care practice [89]. For these reasons the management of PWD and their CGs should be organised on the
In primary care, the
4. The case management model in primary care
PWD and their CGs often encounter services that are fragmented, protocol-driven and only weakly tailored to individual and family needs. Because dementia is a more or less slowly progressive disease, the needs of the PWD may change greatly over time, requiring consequently support from a complex and flexible matrix of social networks and services, as well as from family CGs who should adapt themselves to the cumulative repercussions inherent to the disease (and associated chronic or new onset) organic pathologies of their relative with dementia. In addition, the interaction of medical professionals, PWD, family, and systems barriers in primary and secondary care explain why providing timely, proactive, responsive, well-coordinated and patient-centred clinical care is so difficult [9, 98].
In Europe, there is a great need to reconfigure services for PWD and their families so that they become more patient-centred and family-centred. Case management approaches that start with an assessment of needs shared between patients, caregivers and professionals, show promise as a way to improve the quality of life of PWD and their families, reduce health expenditure (e.g., inappropriate hospital admissions), and produce societal gains [99]. A recent systematic review of randomised controlled trials (RCTs) of case management for PWD and their CGs concluded that the evidence for the efficacy of case management with reference to cost and resource usage is not strong enough and that further studies ought to consider who might benefit more from case management [98]. On the other hand, some well-conducted, long-term studies have demonstrated how case management can delay institutionalisation, with potentially important health and economic gains [100–103].
Case management was found to not affect nursing home placement, hospitalisation and emergency room (ER) referrals [104], and consistent with this, the reviews agreed that case management produced small to no decreases in resource utilisation when healthcare expenditure, hospitalisation or institutionalisation were considered [105]. There is a limited number of RCTs of in-home care/case management for PWD. These studies measured a diversity of outcomes that makes it difficult to draw conclusions. A Finnish study found that case management was effective in deferring nursing home placement, particularly for persons with severe dementia; however, by the end of the 2-years follow-up, the numbers of participants admitted to long-term residential care were similar for case management and usual care groups [106]. An American study over 12 months found that in comparison with usual care, case-managed clients improved adherence and quality of care on dementia guidelines, increased use of community agency assistance, and patient health–related quality of life, overall quality of patient care, caregiving quality, social support and level of unmet caregiving assistance needs [101].
Another study found that characteristics of case management, which negatively influence implementation, are low intensity of case management (e.g., infrequent follow-up), a large case load (60 patients or more per case manager), and a reactive (rather than proactive) approach to care [107]. In the Netherlands, the model of case management in which case manager and client services are embedded
There is a great need to reconfigure services for PWD and their families to become more patient- centred, using case management approaches that start with an assessment of needs shared between PWD, CGs and healthcare professionals. The Case Management Society of the United Kingdom defines case management as
5. The "Modena Primary Care Dementia Project"
5.1. Historical overview
In 1999 the Regional Government of Emilia-Romagna deliberated the “Regional Dementia Project” (D.G.R. 2581/1999), an act that provides funds for the organisation of Health and Social Welfare Services in the community for PWD aimed at (a) ensuring a correct and timely diagnosis of dementia; (b) ameliorating the health-related quality of life and overall quality of care of PWD; (c) extending the period of home care for as long as possible; (d) adapting, expanding and specialising the existing health and social network services for PWD; (e) enhancing the role of the family associations and (f) qualifying the care processes of hospitalised PWD. The regional project’s actions to guarantee global care plans, follow-up and continuity of (in-home) care of PWD include (a) creation of a network of specialist centres for cognitive disorders and dementia (CCDD) with competencies in diagnosis and care planning; (b) increase of formal and informal support for families of PWD; (c) amelioration of the network services tailored to the individual needs and resources of the individual PWD and his/her CGs and (d) widespread training and education of social and healthcare professionals.
According to this regional dementia project, and given the GP’s pivotal role in the timely diagnosis of dementia, the Local Authority for Health (
The final outcome of these two protocols are to improve the quality of life and health of PWD and their families, satisfying the preference of PWD (and/or their families) to remain living at home and maintain normality for as long as possible deferring long-term residential care in agreement with the results of some RCTs of integrated care models for the frail elderly including people with cognitive impairment [108].
5.2. Dementia case-finding (Form A)
When the GP suspects an incipient dementia, he/she administers the
5.3. Follow up (Form B)
After the diagnostic work-up, the patient is returned to the care of the referring GP with (typological) diagnosis and advices for follow-up with annual compilation of Form B which includes, in addition to the patient’s cognitive (MMSE), functional ([I]ADL) and physical health (CIRS) status, data regarding the recourse to day centre or (temporary respite) residential care and the implementation of a “ health in-home care service” integrated with local public or private social service systems (the so-called
The following paragraphs illustrate some results of the most relevant aspects of the Modena Project collected in 2013.
5.4. GPs’ adhesion to the project
About 68% (385 out of 568) of the GPs practicing in the 7 Health Districts of the Province of Modena are actively participating into this project on completely voluntary but remunerated basis. Between 2007 and 2013, 9542 PWD have been enrolled by the GPs (Form A and B) with 5195 cases (females = 64.5%; median age = 86 years) still active (Form B for follow-up) in 2013.
5.5. GPs’ referral for diagnosis to the specialist centres
Of 4530 outpatients referred by the GPs for the first time to the specialist of CCDDs, 2778 patients received a diagnosis of dementia (61%), whereas 865 patients (20%) were considered at risk (mild cognitive/vascular impairment). Only 598 cases (14%) did not display any sign/symptom of cognitive impairment or dementia. Though these figures suggest an appropriate referral by GPs to the specialist of CCDD, it should be noted that in reality only 8% of PWD aged 65–80 years and 48% of PWD with age >80 years are enrolled by the GPs according to the estimated prevalence of dementia in these two age subgroups (i.e., 4% and 16.8% respectively) (data from the Department of Clinical Epidemiology of Modena, unpublished), confirming the universally observed trend to underdiagnose dementia in primary care.
5.6. Ordinary and semi-urgent home visits
In 2013, 3706 home visits (i.e., at home, in nursing homes and in day care centres) have been conducted, some of them together with GPs, which correspond to 22% of the total (first and control) visits (n= 16,623), confirming the important work done by the CCDDs at the provincial level as part of the Department of Primary Care. As presented in Table 3, eligibility criteria for ordinary and semi-urgent home visits have been established in agreement between the specialists of the CCDDs and the GPs. An analysis of the 65 “semi-urgent” home visit requests received by the CCDD of the Health District of Modena in the first half of 2014 is as follows. Only 8 of 65 requests were followed by a home visit within 7 working days from the GPs’ phone call; 9 requests were resolved with a telephone conversation between the referring GP and the Geriatrician; 26 cases have been turned into “semi-urgent outpatient visits” at the CCDD and 22 in ordinary home visits. In 12 PWD (18.5%), it was necessary to activate other services: one patient was sent to the ER, one to a territorial Centre of Mental Health, three patients were assessed by a Multidimensional Assessment Unit—a team composed of a Geriatrician, a Nurse and a Social Worker—two patients were transferred to a Special Hospital Unit (SHU) for Dementia, three to an Alzheimer Day Centre (ADC) and two to a temporary residential Special Care Unit (SCU). The latter three structures are an integral part of the integrated network of health and social services dedicated to the diagnosis and treatment of PWD with BPSD related to dementia, environment or caregiving (ADC and SCU) or secondary to organic or iatrogenic comorbidities or multimorbidities (SHU) according to the evidenced-based model of structures and organisations for the care of major BPSD (Alzheimer Cooperative Valuation in Europe, www.alcove-project.eu).
5.7. Integrated domiciliary care
As explained above, the Modena project pays great attention to support PWD in their own homes. In-home care for PWD is delivered in close cooperation with the treating GP across the province through a wide range of actions (see Figure 1) ranging from the aforementioned agreement act with the GPs for taking care of PWD and their families to the use of respite care (nursing homes, SCU, ADC) and to an economic support (care voucher)—similar to the consumer-directed care model— thanks to regional funds for long-term care of frail elderly for low-income families who decide to care for their loved at home.
Health and social services intervene whenever one of the following trigger conditions is verified (a) the PWD lives alone without direct relatives and a valid homemaker assistance; (b) home environment requires adaptation to the PWD’s new onset needs; (c) family or formal CGs are in trouble and unable to manage BPSD; (d) the PWD’s clinical picture or social conditions undergo a substantial worsening that requires the search for an alternative care plan and (e) the PWD evolves to a terminal stage of illness.
⋅ Bedridden patient or with major locomotion difficulties (rendering a problematic transport to the CCDD) ⋅ Patient with preserved ambulation but frankly uncooperative and/or depressed who refuses to leave the house |
|
Ordinary home visits | Semi-urgent home visits (within 7 working days) |
Persistent BPSD: aberrant motor activity, vocalizations, physical aggression, insomnia | Persistent (for at least 10 days), major and worsening BPSD: aberrant motor activity, continuous vocalizations, physical aggression, delusions and/or hallucinations with functional impact, insomnia) |
Exclusion criteria: ⋅ Organic precipitating causes such as infection or uncontrolled pain (e.g., (S)DSD) ⋅ BPSD refractory to drug therapy and psychosocial interventions already undertaken before |
The latter service is delivered provided that the following conditions are met (a) inability to easily reach points of care; (b) the presence of at least a prevalent organic symptom (e.g., aspiration pneumonia); (c) presumed life expectations inferior to 4 months; (d) little opportunity to intervene with effective care and (e) family CGs are adequate and are integrated with the healthcare team.
In 2013, 2210 PWD have been followed in domiciliary care, representing 42% of the total number of PWD (5,195 forms B still active) cared for in the long term by the GPs. This percentage highlights how the use of in-home care is becoming an increasingly necessary care model for PWD, especially in the end-stage of the disease. Indeed, an analysis of the nursing care activities documents a prevalence of interventions for complications typical of late-stage dementia, such as the treatment of pressure ulcers (representing 44% of total domiciliary nurse activities). Overall these data indicate that dementia has become the second most important disease (after chronic heart failure, but before cancer disease) in contrast to what happened before where cancer care at home exceeded that for dementia.
5.8. The Modena project: from the present to the future
The next step of the Modena project is the introduction of an indicator of the quality of care of PWD in primary care as suggested also by the recent National Dementia Plan (October 2014). The intention is to substitute the hard-copy reports (Form B) with manual extraction of data with an electronic format provided by a software house containing, besides information about demographic and clinical data, additional biochemical and instrumental tests and pharmaceutical treatment (Table 4).
0 points | 5 points | 10 points | Source | |||
1 | Presence of PEG/feeding tube | YES | -- | NO | ADI web/CCI/ABC software for NH | |
2 | Use of antipsychotics | YES > 90 days of therapy/year | YES but > 90 days of therapy/year | NO | ADI web/CCI/ABC software for NH | |
3 | HbA1c in diabetes mellitus | HbA1c < 6,5% o > 8,5% | 6,5%<HbA1c < 7,5% | 7,5 % < HbA1c < 8,5% or No Diabetes mellitus | CCI | |
4 | Use of benzodiazepines or hypnotics | Yes > 30 days of therapy/year | Yes but ≤30 days of therapy/year | No | CCI | |
5 | Use of fluoroquinolones | YES | YES but ≤ 2 blisters/year | No | CCI | |
6 | 1 ECG/year in patients who uses antipsychotics | No | -- | Yes or No antipsychotic therapy | CCI | |
7 | 1 creatinemia /year | No | -- | Yes | CCI | |
8 | Blood Pressure (BP) Measurement | No | BP< 110/70 mmHg BP> 140/90 mmHg |
110/70 mmHg<BP< 140/90 mmHg | CCI | |
9 | 1 NPI/year | No | -- | Yes | CCI/CCDD | |
10 | 1 PAINAD/year | No | -- | Yes |
CCI/CCDD |
The collected data will be integrated and assembled into a single database and analysed in collaboration with the Department of Clinical Epidemiology of the ASL of Modena, in order to develop a reporting, including the introduction of a composite indicator of quality of care, following the recommendations of the "
This composite indicator, called QuADisC (
For each patient, the total score will be calculated automatically within a clinical database that integrates demographic information and other clinical data provided by the GPs. There will be a refunding for the GP who sends the required data.
The QuADisC will be validated by correlating with an indicator of the effectiveness of care based on the number of (a) ER visits, (b) hospital admissions; (c) nursing home placement and (d) mortality, specifying reasons of ER referrals, admission to acute hospital wards or a nursing home and possibly the cause of the
6. Conclusions
Primary care is pivotal to the delivery of good quality assessment and care for PWD. There is a need for greater dementia-specific awareness through education and the organisation of systems both within practices and across interfaces between organisations. There are at least three specific areas that need addressing to improve care of PWD in primary care (1) necessity to standardise assessment tools and to use innovative technologies to facilitate early diagnosis; (2) opportunity to increase awareness of the benefits of psychosocial interventions in primary care for PWD, such as psychological interventions for CGs, cognitive stimulation and occupational therapy and (3) possibility to promote knowledge on the use of drugs by PWD and an enhancement of supportive strategies for patients and carers.
It is hoped that the introduction of a "
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