INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY

Int J Geriatr Psychiatry 2005; 20: 377–386.

Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/gps.1302

Factors affecting timely recognition and diagnosis ofdementia across Europe: from awareness to stigma

Myrra J. F. J. Vernooij-Dassen1*, Esme D. Moniz-Cook2, Robert T. Woods3, Jan De Lepeleire4,Antonio Leuschner5, Orazio Zanetti6, Joycelyn de Rotrou7, Geraldine Kenny8, Manuel Franco9,Vincent Peters10, Steve Iliffe11 and the INTERDEM group

1Alzheimer Centre/Centre for Quality of Care Research/Vocational training General Practitioners of University MedicalCentre Nijmegen, The Netherlands2Institute of Person Centred Research in Aging/Department of Clinical Psychology, Postgraduate Medical Institute with theHull-York Medical School, University of Hull, UK3Dementia Services Development Centre, University Bangor, Wales, UK4Academisch Centrum huisartsgeneeskunde, KULeuven, Belgium5Hospital de Magalhaes Lemos, Portugal6Geriatrician, Alzheimer Research and Care Unit IRCCS Centro S. Giovanni di dio Fatebenetratelli. Brescia, Italy7Hospital Broca, Service de Gerontologie Clinique, Paris, France8Department of Psychology, northern Area Health Board, Dublin, Ireland9Fundacion Intras, Zamora, Spain10Business Administration, Radboud University, Nijmegen, The Netherlands11Centre for Ageing Population Studies, Royal Free and UCL Medical School, London, UK

SUMMARY

Background Timely recognition and diagnosis of dementia is the pre-condition for improving dementia care, but diag-nosis often occurs late in the disease process.Objective To compare facilitators and obstacles to the timely recognition of dementia across eight European Union states,in order to implement established policies for earlier diagnosis.Methods A modified focus group technique, including a pre and posterior procedure.Results Twenty-three participants from different disciplines, purposively sampled for professional expertise in dementiaresearch and innovative practice, attended two focus groups. Stigma in ageing and dementia, accompanied by a sense thatthere is little to offer until later on in the disease, underpinned the widespread reluctance of GPs to recognise dementia at anearly stage and were major obstacles to the timely diagnosis of dementia across all eight countries. Dementia care servicesvaried widely across Europe. Countries with the greatest development of dementia health care services were characterisedby national guidelines, GPs fulfilling a gatekeeper function, multi-disciplinary memory clinics and innovative programmesthat stimulated practice and new services. Dementia-related stigma was perceived as being less prominent in these countries.Conclusions Overcome of delays in the timely diagnosis of dementia needs more than specialist services. They shouldaddress the processes associated with stigma, age and dementia, especially where these relate to physician practice anddiagnostic disclosure. Stigma is perceived as variable across European States, with a promising finding that its impact isrelatively small in countries with the widest range of dementia care services. Copyright # 2005 John Wiley & Sons, Ltd.

key words— dementia; early diagnosis; focus group; stigma; health care services

Received 16 August 2004Copyright # 2005 John Wiley & Sons, Ltd. Accepted 14 December 2004

*Correspondence to: Dr M. J. F. J. Vernooij-Dassen, Centre for Quality of Care Research, Alzheimer Centre, University Medical CentreNijmegen, PO Box 9101, 6500HB Nijmegen, The Netherlands. Tel: 0031-(0)24-3615305. Fax: 0031-(0)24-3540166.E-mail: m.vernooy-dassen@voha.umcn.nl

Contract/grant sponsor: European Union Programme Quality of Life and Management in Living Resources Key Action 6.1 Aging RelatedIllnesses and Health Problems; contract/grant number: QLRT-2001-00296.

INTRODUCTION

Many governments stress the importance of earlydetection in their dementia strategies to help preparefamilies for the difficult road ahead (Moise et al.,2004). However, it takes on average 30 months fromthe initial symptoms noticed by either patient or rela-tive before a medical evaluation takes place (Haleyet al., 1992). In the absence of a diagnosis it remainshard to offer support to minimise the burdensomeimpact of the disease process. Consequently, patientswho may be aware that something is wrong (Clare,2003), remain isolated in their uncertainty, whilstfamily caregivers have episodes of depression,immune system disorders, altered capacity for woundhealing, increased consumption of psychotropic drugsand increased mortality (Schulz and Beach, 1999).Timely diagnosis may prevent crises, facilitate adjust-ment and provide access to a range of treatments andsupport (Woods et al., 2003). Timely recognition anddiagnosis is defined as when the patient or ‘caregiver’and the primary care physician recognise that theremay be a developing disease. Timely detection canbe enhanced by an understanding of the factors thatdelay early detection, consequent diagnosis and sup-port of people with dementia and their caregivers.

Timely recognition of dementia in primary caremight have different expressions across Europe dueto national variations in resources, service provisionand professional cultures. Developing coherentEuropean policies may therefore be problematic.One approach to enhance timely diagnosis is to con-sider national differences within a framework of aQuality Improvement Programme (QIP), as has beendone in other chronic diseases such as diabetes (Grol,2001). QIP methodology provides a systematic fourstage approach to the process of implementation ofnew developments. We translated the four QIP stepsas follows: first, given established policies for earlierdiagnosis of dementia, a plan to improve dementiacare through timely recognition in primary care wasspecified; second, examination of the facilitators andobstacles to recognition and timely diagnosis needsunderstanding; next change strategies for diagnosticpractice can be developed; and finally, an interven-tion, using the identified facilitators to address theobstacles needs to be implemented and evaluated.To achieve our aim of improving knowledge and prac-tice in the timely recognition of dementia in primarycare, the second step of QIP methodology was used ina European Union (EU) funded study (DIADEM).The research explored the similarities and differencesin facilitators and obstacles to the timely recognition

and diagnosis of dementia within primary care, ineight EU states.

METHODS

Participants

A purposive sampling approach was used to derivemultinational multidisciplinary focus groups.National experts in dementia and primary care ineight European countries (Belgium, France, TheNetherlands, Ireland, Italy, Portugal, Spain and theUnited Kingdom) were invited. Experts were requiredto have national knowledge on dementia care and beactively involved in dementia service provision, or indementia research in primary care, or both. Expertsrepresented the following disciplines: general practice(GPs), geriatric medicine, old age psychiatry, nursing,social work, clinical psychology, neuropsychology,medical sociology and non-governmental organisa-tions.

Modified focus group. The key technique used in thisstudy was a modified focus group. Four topics werestudied with this technique: facilitators and obstaclesto timely recognition of dementia, methods to diag-nose dementia, dementia-related national circum-stances and management of dementia services.These topics were identified as important influencesin timely diagnosis and covered medical, economic,psychosocial and cultural aspects related to dementia.The focus group interview is a qualitative methodoften used to address this type of research enquiryin health care. Its strengths are: eliciting verbal andnon-verbal information about a problem; allowingelaboration, criticism and defence of responses andpropositions; exploring attitudes (Fuat et al., 2003);and generating ideas and priorities by participants,which may otherwise be missed during individualinterviews (Kitzinger, 1995). In order to address thestudy aims adequately, national information was apre-requisite and a pre and posterior procedure wastherefore included as follows:

(1) Pre-procedure. Preparatory data for each partici-pating country using standard data collectiongrids were circulated to all participants prior tothe first interview. This allowed systematic datacollection on epidemiology, research in primarycare, practice and service provision in dementiacare.

(2) Focus group sessions. Twenty-three participantswere divided into two groups which remained thesame throughout the four sessions. Each group

378 m. j. f. j. vernooij-dassen ET AL.

Copyright # 2005 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2005; 20: 377–386.

had representatives from the eight states and werematched for professional discipline. The sessionswere facilitated by an expert methodologist (VP).Groups considered the same topics and chairper-sons used a short topic guide. Each topic wasconsidered in a focus group session lasting 1.5 h.Two scribes manually recorded themes and sub-themes independently. Summaries were pre-sented to the group for clarification, modificationand consensus. To derive themes from the groupsa grounded theory approach was used. Thisallowed new observations to be examined againstcurrent knowledge and further refined to extendthe knowledge base (Glaser and Strauss, 1967;Murphy et al., 1998).

(3) Posterior procedure. The themes and sub-themeswere then summarised in grids (Beaudin andPelletier, 1996). These were circulated to allparticipants who convened two months later tointegrate the findings in the light of theory, todevelop concepts and thus extend knowledge.Member checks of these results were used as partof the error reduction process (Pope and Mays,1995).

Thus an iterative research process, in which datacollection, analysis, clarification and discussion wereinter-related processes, was used (Corbin and Strauss,1990; Wester and Peters, 1995).

RESULTS

Pre procedure data—epidemiology and mental healthfacilities in EU countries

Since there was no systematic registration of demen-tia cases in EU countries, we relied on epidemiologi-cal studies noting that dementia is primarily a diseaseof very old people, whose numbers will increase inthe next two decades.

Table 1 summarises data collected prior to focusgroups, set against national expenditure on mentalhealth across each participating country. The avail-able estimates of epidemiology are similar acrossthe participating EU member states. However, thesecomparisons must be treated with caution as agegroups and sources differed across countries. Forexample, whilst countries such as France rely on largeepidemiological studies, others such as Ireland arebased on contacts with psychiatric services whichmay reflect an underestimate of incidence, since manynew cases are likely to be seen in geriatric medicineand may never come into contact with psychiatric ser-vices (Keogh and Roche, 1996).

We did not recruit new and emerging states to thisstudy. Thus, based on World Bank 2000 criteria, alleight participating countries are within the highincome group. Table 1 shows that although the pro-portion of the Gross Domestic Product devoted tothe health budgets is highest in France (9.8%) andlowest in the UK (5.8%), the percentage expenditureon mental health is highest in the UK. The primaryresource for dementia care in all eight countries ispublic funding combined with some privateresources, except in France. These results do not seemto reflect differences in national prosperity. The rateof medical specialist involvement in diagnosingdementia appears to be a better reflection of nationalwealth. The relative number of psychiatrists and neu-rologists per 100.000 population is lowest in Spain,Portugal and Ireland. Notably no figures are availableon geriatricians who are also involved in the diagnosisof dementia. This pre-procedure data provided sup-port for the view that national dementia care resourcesvaried between the participating countries and thepotential differences and similarities were exploredwithin focus groups.

Focus groups

Twenty-three experts participated in two focus groupsconducted over a two-day period. This provided infor-mation on facilitators and obstacles to timely diagno-sis of dementia in EU countries and strategies toimprove timely recognition and diagnosis.

Facilitators. Four themes with related sub-themeswere identified as follows: Methods for early diagno-sis, GP education, Organisation of health care andResources (see Table 2).

Methods for early diagnosis

Guidelines enhanced the diagnosis of dementia sincethey provided practitioners with a rationale for earlyrecognition and methods on how to diagnose and treatdementia. In some countries such as Spain, guidelineformation was mature with both a national guidelineand several region-specific guidelines in place.Guidelines were absent in Portugal and Ireland.

GP education

All participant states had acted on the EU policyrequirement of a three-year vocational training forGPs, which in theory should be a facilitator for timely

timely diagnosis of dementia and stigma across europe 379

Copyright # 2005 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2005; 20: 377–386.

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380 m. j. f. j. vernooij-dassen ET AL.

Copyright # 2005 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2005; 20: 377–386.

diagnosis and dementia care. However, specialisteducational programmes in diagnosis and treatmentsof dementia were only evident in four countries(UK, BE, NL, FR).

Organisation of health care

The gatekeeper role of GPs appears to be an advan-tage in terms of timely diagnosis, since older peoplehave easy, frequent, routine contact with them aboutother health complaints.

Gatekeeper GPs are well placed to recognise theearly signs of dementia and enhance access to thenecessary range of professionals and diagnostic teststhat are often needed to address the complexities ofdiagnosing a dementia in the earlier stages, such asare found in memory clinics. Memory clinics arewidespread across Europe, but there are hugewithin-nation regional variations in their availabilityand how they function. Where memory clinics donot exist, the concept of shared practice across pri-mary and specialist services has been adapted toenhance timely diagnosis, for example between GPsand psychiatrists in one region in Portugal.

Resources

The variety and range of dementia care treatmentand services within countries was associated withthe presence of dementia research centres and govern-ment initiatives in dementia care. For example, in theUK and the Netherlands ‘dementia centres’ are asso-ciated with research departments that have broadenedthe variety of innovation, psychosocial practice andservice development across regions, with some inter-vention targeting public awareness and stigma in

dementia. In Italy, the government-led nationalCHRONOS project (Raschetti et al., 2003) standar-dised prescription of the cholineresterase inhibitors,within specialist centres.

Obstacles in use of services

Four service types were identified, relating to residen-tial care, home care, respite care and service innova-tions. The availability of services was no guarantee oftheir satisfactory use. The extent to which services tosupport for both patient and family caregivers wereused was influenced by the prevailing obstacle to theiruse (see Table 3).

Residential care

The percentage of people with dementia living in aninstitution ranged from 15% in Italy to 38.5% inFrance. The availability of residential care was lim-ited in Spain, Ireland and Portugal. In some countriesaccess to residential care was prohibited by costs. Forexample, in Spain only low-income families receivedgovernmental financial support and costs were there-fore prohibitive for those of mid-income status. In allcountries residential care was seen as a last resort forthe person and the carer. Furthermore, there were vari-able standards for residential care.

Home care organisation

Home care organisations were available in all partici-pating countries, but obstacles to access includeduneven geographical distribution, bureaucracy andwaiting lists. Complex financing was a major problemin France and Italy.

Table 2. Facilitators

EU state NL Be UK Sp It Po Fr Irl

Methods to diagnose dementiaGuidelines X X X X X X

GP educationEducational programmes X X X XThree year vocational training X X X X X X X X

Organisation of health careGP gatekeepers X X X X XMemory clinics X X X X X X

ResourcesEvidence based innovative programmes X X X XDementia expertise centres X X X X

X¼Facilitator present.

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Respite care

This was provided in a variety of ways such as day-care centres and in-home volunteer visiting schemes.Both waiting lists and under-use of specialised ser-vices prevented effective service usage. Under-usewas related to a poor understanding of the real bene-fits of the particular service.

Innovative projects

These were present in most EU states but commonobstacles were lack of funding for systematic evalua-tion or short-term funding which usually did not allowfor implementation of effective results into main-stream services.

Stigma and dementia

Synthesis of the data highlighted the prominence ofcultural norms in dealing with dementia, colouredby the stigma associated with dementia. Stigmareflects a process of disqualification whereby a nor-mal person is reduced to a person with whom some-thing is wrong (Goffman, 1963). Stigma emerged asan important influence on delays in recognition anddiagnosis in primary care through the processes ofconcealment, minimisation or ignoring of early signs

and symptoms. A striking similarity across all stateswas dementia-related stigma by professionals and inmost, but not all cases, this was regardless of financialresources. There was the belief that there was little tooffer since dementia was a deteriorative disease. Thiswas associated with reluctance toward an early diag-nosis and pessimism about prognosis, which in turnenhanced therapeutic nihilism in early stages ofdementia. The nature and processes through whichstigma is manifested remains complex, since stigmaattached to dementia in the general population is avariably distributed phenomenon both within andamongst countries (Iliffe et al., 2005). For example,physicians were particularly resistant to providing adiagnosis in Spain and Portugal. In some countries,such as Portugal, avoidance of the dementia label isrelated to resources, since it may preclude access tonursing home care (lliffe et al., 2005). In Belgiumthere is a national debate on dementia and euthanasia,with one view that suffering from dementia reflects anundignified existence and another, predominantlyfrom the Alzheimer societies, that preserving the dig-nity of people with dementia is an important endea-vour. In the Netherlands, UK and France, wherethere are strong Alzheimer Societies, the role ofstigma appears to be declining in the general popula-tion. Shame associated with having a family memberwith dementia may also be declining in these coun-tries (Table 3).

Table 3. Obstacles in use of services

EU state NL Be UK Sp It Po Fr Irl

Residential careAvailable on large scale but waiting list X X X XLimited availability X X XToo expense for mid- or low incomes X

Home care organisationAvailable on large scale but bureaucracy and waiting lists X X XUneven geographical distribution X X X XComplex financing XLimited availability X

Respite careUnderuse of particular services XAvailable, but waiting lists daycentres X XToo expensive for mid or low income groups X XLimited availability X X X

Innovative projectsShort time funding X XNo or very limited resources X X X XImplementation X X X X

Cultural norm: stigmaProfessionals: incurable and untreatable X X X X X X X X‘Feeling of having nothing to offer’Population: disease to be hidden for friends X X X X X

X¼Obstacle present.

382 m. j. f. j. vernooij-dassen ET AL.

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Can timely diagnosis be improved?

Using the QIP framework, we translated the findingsinto suggestions to promote timely diagnosis(Figure 1). First, special attention should be paid tostigma. Education initiatives that directly addressthe role of stigma and its impact on patients aware-ness, carers problems and effective interventionsmight help to alter physician practice. Reluctance sur-rounding diagnostic disclosure may then be addressedthrough step-wise diagnostics and multidisciplinarycollaboration, which actively includes the GP in thewhole process (Wind et al., 2003). This may assistGPs to balance their perceived lack of time and thesense that they have nothing to offer.

DISCUSSION

This study is a first attempt to achieve a coherent EUapproach to a timely recognition and diagnosis ofdementia in primary care, by exploring the facilitatorsand obstacles to this. There was wide variation in theobstacles to timely diagnosis of dementia in primarycare across EU countries, apart from a prevailing hes-itation surrounding early recognition by the GP, asso-ciated with stigma related to dementia in older people.Guidelines and the availability of health care servicessuch as memory clinics to assist early diagnosis wereseen as necessary, but not sufficient, to overcome thedelay in diagnosis. This study suggests that stigmaassociated with dementia by professionals is theover-riding factor in delaying timely diagnosis,regardless of available resources. Other studies alsonote the presence of stigma associated with dementiain the health care sector (de Mendonca Lima et al.,2003: De Lepeleire et al., 2004). Stigma was oftencited as a reason for not disclosing a dementia diag-

nosis (Bamford et al., 2004). Our results on the rela-tionship of stigma and the reluctance to provide adementia diagnosis are supported by the findings ofMilne et al. (2000) who note that specific beliefsunderpin GP attitude to early diagnosis and that thereis a strong link between GP attitude and subsequentaction and practice.

This present study reflects the second step within aQIP where the focus was on the facilitators and obsta-cles to timely diagnosis. The next step in the QIP is todevelop change strategies for diagnostic practice thataddress the role of stigma attached to dementia byGPs. Both educational programmes and guidelinesmay alter this belief. Educational programmes mayfocus on personal beliefs and images of stigma indementia, such as the double negative labelling ofbeing old and having a psychiatric disorder (Benbowand Reynolds, 2000; Sartorius, 2003, Iliffe et al.,2005), the association of dementia with its last phase(Iliffe et al., 2005) and the perception that people withdementia have no capacity for pleasure (Graham et al.,2003) or that they lack awareness (Clare, 2003). Stra-tegies to dispel myths and change perceptions asso-ciated with dementia can include information thatonly 14% of institutionalised patients may in factreach the end phase of dementia (Koopmans et al.,2003) and that there is individual variation in aware-ness amongst people with dementia (Clare, 2003).Person centred approaches to intervention aimed atmaintaining quality of life (Brodaty et al., 2003; Ver-nooij-Dassen and Olde Rikkert, 2004) may be used toaddress the perceived lack of treatment (van Houtet al., 2000; Bamford et al., 2004). Since all eightstates now have a three-year vocational GP trainingprogramme, there is scope for integrating the primarycare dementia care educational initiatives that havebeen developed in some countries, to facilitate timely

Suggestions to improve timely diagnosis of dementia

* Explore and address the role of stigma perceived by physicians* Pay special attention to early symptoms of dementia* Adopt a stepwise diagnostic process: affirmation of signs by using a short instrument (Hopman-Rock

et al., 2001) followed by assessment of memory complaints, cognitive functioning and (I)ADLfunctioning.

* Promote multidisciplinary collaboration both in making the diagnosis as well as in early intervention. Theneed for structural collaboration, co-ordination and continuity of care is stressed.

* Organise early intervention for carers focussed on their individual needs, facilitated by an instrument todiagnose care giving competence and suggestions to meet needs for care.

* Develop early psychosocial intervention support programmes, to maintain the patient’s unique identityand minimise their anxiety and depression.

timely diagnosis of dementia and stigma across europe 383

Copyright # 2005 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2005; 20: 377–386.

recognition and diagnosis (Iliffe et al., 2000). Devel-oping guidelines where they do not exist and updatingthese to address the obstacles to timely diagnosis, ashas been recently achieved in the Netherlands usingthe present study findings (Wind et al., 2003), arefurther change strategies that can be considered.The relatively minor role of stigma in the generalpopulation in countries with stronger Alzheimerssocieties and the widest range of dementia care ser-vices is a promising observed outcome, but the pro-cesses by which de-stigmatisation can occur at thepersonal, organisational and societal levels have yetto be properly understood. In this paper we haveaddressed the first three stages of a QIP in dementiacare, i.e. specified the aim, understood the facilitatorsand obstacles and suggested strategies for changebased on these findings. The fourth QIP step whichrequires an intervention study to implement the pro-posed change strategies will, we suggest, providethe evaluative arena for further clarity on the complexprocesses associated with stigma, ageing and demen-tia across the participant countries.

The strength of this study on primary care anddementia was its eight nation sampling of multi-pro-fessional experts who were at the forefront of researchand innovative practice. Limitations include theobvious problem of sampling experts who may notreflect the experience of their non-expert professionalpeers. Another potential confounder was that focusgroups occurred in English whilst the majority of par-ticipants were thinking and speaking in their secondlanguage, which may have reduced the range andquality of emergent themes. To overcome this pro-blem we strengthened the focus group technique witha pre and posterior procedure which enhanced relia-bility within an iterative review process.

This study underlines the urgency for an active andsystematic approach to improve dementia care acrossEurope that can begin to combat stigma. Our resultssuggest that GPs have a pivotal position in engagingwith older people, but this needs to be followed byinterventions that address the pan-European needfor them to have higher expectations, better trainingand multi-professional support. The process of diag-nostic disclosure is a powerful early intervention forthe person and the family (Moniz-Cook and Woods,1997), where communication strategies to facilitatethe practical meaning of dementia can be addressed(De Lepeleire and Heyrman, 1999). Timely recogni-tion of dementia in primary care should allow peoplewith dementia and families, with the support of spe-cialist services, the communities that they live in, andthe wider society, to maintain pleasure and a sense of

well being, despite their disability. Whilst cure is notpossible, current underused interventions can be max-imised to improve the life of patients and carers and tocombat fear, shame and stigma.

ACKNOWLEDGEMENTS

This project was funded as DIADEM project by theEuropean Union Programme Quality of life and man-agement in living resources Key action 6.1 Agerelated illnesses and health problems. QLRT-2001-00296.

The Diadem group is part of the Interdem group.The other participants of the Diadem group were:M. Blom, MA; E. Derksen, MA; H. van Hout, PhD;A. Wind, PhD, MD; C. Lamers, MA; J. Wilcock,MA; J. M. A. Manthorpe, PhD; M. Downs, PhD; I.Cantegreil, MA; M. Gianelli, MA; V. Gonzalez,MD; M. Anjos Reis-Lima, MD; A. Lewis, MA;S. Cahill. PhD. Interdem group: a pan-Europeanresearch and practice collaboration on psychosocialapproaches to early and timely intervention indementia.

We would like to thank The University of Leuven,and For Dementia UK, for accommodating the focusgroups.

Preliminary results were presented at the 11thCongress of the International Psycho-geriatric Asso-ciation IPA, Chicago 2003.

KEY POINTS

* There is wide variation across EU member statesin facilitators of timely diagnosis, such as theavailability of guidelines and memory clinics.

* There is cultural variation in the role of stigmain dementia, across countries. This is associatedwith attitudes about early intervention andprognosis as well as the range of dementia careservices available.

* The hesitancy and delay surrounding timelyrecognition, is prominent in all EU states andspecialist services in themselves are not enoughto overcome this. Stigma associated withdementia by professionals seems to be the mostpowerful influential factor.

* Both pan-European guidelines and educationalprogrammes addressing general obstacles andnational guidelines addressing nation-specificobstacles by using nation-specific facilitatorsare required.

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