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Revised

Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines

[version 2; peer review: 2 approved]
PUBLISHED 12 Feb 2025
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Abstract

Introduction

A timely diagnosis of dementia offers the opportunity of earlier intervention and activation of coordinated care plans. General Practitioners (GPs) play a key role in dementia diagnosis, from symptom recognition to clinical assessment, investigation, diagnosis and onward referral for confirmation of the diagnosis and subtyping. Dementia clinical practice guidelines (CPGs) offer clinicians guidance on dementia care but often do not specifically address the role of the GP in the diagnostic process. This protocol outlines a scoping review to identify evidence-based dementia clinical practice guidelines and map the recommended role of GPs in the diagnosis of dementia.

Method

The scoping review will be conducted using the Arksey and O'Malley framework, and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews (PRISMA-ScR) will be used to guide the reporting. We will search five electronic databases (PubMed, CINAHL, Embase, PsycINFO, Cochrane Library) for dementia CPGs published since 2019. CPGs are often not published in peer-reviewed journals; therefore, a parallel search of relevant grey literature will be conducted. We will also search the websites of GP professional organisations and guideline developers. Two reviewers will independently screen all articles based on inclusion criteria, with conflicts resolved by a third reviewer.

Conclusion

This scoping review will examine up-to-date dementia CPGs to determine recommendations for the role of GPs in the assessment, investigation, diagnosis and onward referral of patients with suspected dementia to secondary care.

Keywords

General practice, primary healthcare, practice guidelines, diagnosis, dementia.

Revised Amendments from Version 1

We thank both reviewers for their contributions, which improved the scoping review protocol considerably. We responded to each reviewer using a point-by-point response format and provided the details of the changes made. We have added to the introduction section to address the 'why' of referral, the imminent introduction of DMTs, and the critical role GPs will play in early identification, assessment, and referral to specialist services. In the introduction, we have also addressed the international context of the role of the GP. We have provided more detail in the method section about how we will contact GP professional organisations and included an update of the search before the final analysis. In the conclusion, we expanded on the potential impact of the research to include the development of a dementia diagnosis and management guidance document for GPs in Ireland and potentially to inform the development of a referral form to support referral from primary care to secondary care for patients with suspected cognitive impairment or dementia.

See the authors' detailed response to the review by Emer O'Brien
See the authors' detailed response to the review by Soo Borson

Introduction

Dementia is an acquired cognitive function loss across several domains1 with progressive and potentially severe effects on day-to-day living for patients and their families. Globally, approximately 55 million people live with dementia, with an annual incidence of nearly 10 million cases2, making dementia care a global health priority3. A timely diagnosis of dementia is important as it can improve the quality of life of people with dementia and their family caregivers4. Furthermore, with the emergence of disease-modifying therapies (DMTs), early identification and onward referral for further specialist evaluation is critical as DMTs are indicated for use in early disease stages due to their potential to slow progression but not reverse existing symptoms5.

General Practitioners (GPs), as the usual first point of contact, have a key role in symptom recognition, assessment and referral of patients with suspected dementia. This may involve the direct diagnosis of dementia by the GP or, more usually, the completion of a detailed clinical assessment, relevant investigations and the exclusion of other differential diagnoses prior to onward referral68. In terms of the dementia diagnostic pathway, GPs play varying roles in healthcare systems worldwide, with a significant emphasis on a gatekeeping role in many countries. In the UK and Dutch healthcare systems, GPs serve as gatekeepers, managing patient access to specialists and ensuring efficient use of resources9,10. Similarly, in Australia, GPs control patient referrals to specialists and diagnostic services, promoting cost-effectiveness and preventive care11. Conversely, in the United States, GPs have a less centralized gatekeeping role, as patients often have direct access to specialists, depending on insurance plans12. These varying GP roles reflect differing healthcare priorities, from cost containment to patient autonomy.

Dementia remains underdiagnosed despite the important implications for patients and their families. While GPs have been criticised for low identification and dementia diagnosis rates in primary care13, research has found that many GPs take a nuanced, patient-centred approach14. GPs undertake a complex, decision-making process, whereby they balance the risks and benefits of making the diagnosis15. Even in the absence of a formal diagnosis or disclosure of a diagnosis of dementia, GPs often activate a range of dementia care services and supports for their patients14. When deciding whether to initiate the formal diagnostic and referral process, GPs weigh up many different competing issues related to patient autonomy, consent, risks, patient needs, planning for the future, optimising treatments and access to dementia care services14,15. Upon making a decision to refer to specialist services, dementia diagnostic and care pathways can be difficult to navigate for both GPs and for people living with dementia and their caregivers16,17 leading to further diagnostic delays.

The timing of the diagnosis of dementia is important. Up until now, the absence of effective disease-modifying therapies (DMTs) has led to National Dementia Strategy recommendations for a ‘timely’ diagnosis of dementia as opposed to an ‘early’ diagnosis, i.e. at the right time for the patients, taking the risks and benefits of diagnosis into consideration18. However, the introduction of the first anti-amyloid immunotherapy DMTs for the treatment of patients with early symptomatic Alzheimer’s disease (AD) will inevitably necessitate a shift towards earlier identification and diagnosis19. The emergence of DMTs will likely increase the pressures and demands on primary care and the limited resources of healthcare systems20. It will be important for GPs to identify potentially eligible patients with cognitive disorders, arrange early referral to specialist centres and coordinate care for patients during and after treatment. While the introduction of DMTs brings hope for many, evidence-informed, clear and equitable diagnostic pathways from primary care to specialist services will be urgently needed. In parallel with the introduction of DMTs, the diagnostic pathway of AD is transforming with the introduction of AD-specific biomarkers, most commonly amyloid positron emission tomography (PET) and cerebrospinal fluid (CSF) biomarkers21. Recent findings suggest that blood-based biomarkers (BBMs) will be introduced into clinical practice within two-three years22.

GPs often look to evidence-based clinical practice guidelines (CPGs) to facilitate decision-making in the clinical setting23. A recent systematic review of CPGs for dementia found that many publications include information on diagnosis, treatment and monitoring, with a small number of more recent publications also including screening24. The process of the development of CPGs varies internationally. In some countries, such as The Netherlands, CPGs are developed specifically for GPs25. In contrast, in other countries, guidelines are developed by national organisations, such as the National Institute for Health and Care Excellence (NICE), for a broad range of healthcare professionals, often with GPs as contributors25. Recommendations around clinical assessment and onward referral from primary to secondary care are often not addressed or are unclear in CPGs. For example, the National Institute for Health and Care Excellence (NICE) guideline indicates referral to specialist services when dementia is still suspected after reversible causes of cognitive decline or cognitive impairment from medicines have been investigated7. In comparison, the Scottish Intercollegiate Guidelines Network (SIGN) guideline suggests several cognitive tests that may be used to identify patients who would benefit from referral to secondary care26.

Despite their central position, the specific role of GPs in the diagnostic process has not been systematically examined within CPGs. To the best of our knowledge, no systematic attempts have been made to compare recommendations from existing dementia CPGs with respect to the role of the GP in the diagnosis of dementia. This review aims to identify CPGs that include a focus on the diagnosis of dementia and examine the specific role of GPs in the clinical assessment, investigation, diagnosis and referral of patients to secondary care. The review findings will inform the development of a dementia diagnosis and management guidance document for GPs in Ireland and has the potential to inform the development of a dementia referral form that may be used when referring a patient with suspected cognitive impairment or dementia from primary to secondary care.

Method

The method will follow the procedure outlined by Arksey and O'Malley27 while incorporating additional revisions and suggestions for enhancing and strengthening the framework28,29. Therefore, the review follows a six-step process including: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, (5) collating, summarising and reporting the results, (6) consultation exercise with stakeholders. Each of the six steps in the framework are outlined in detail below. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews (PRISMA-ScR)30 will guide the reporting of the scoping review. The PRISMA-ScR provides a standardised system for researchers to report scoping reviews and includes twenty essential and two optional items in a checklist format. The checklist includes the key items considered essential for providing full transparency around the research process. The completed checklist will be provided in the scoping review publication. The quality of the included guidelines will be assessed using the AGREE II instrument31. This scoping review protocol was registered with Open Science Framework on 17th June, 2024.

1. Identifying the research question

The Population, Concept, Context (PCC) model32,33, widely recommended for scoping reviews, was used to determine the focus of the research question and to formulate inclusion and exclusion criteria.

Search terms (See Table 1) were developed by the research team using a literature review and informed by previous systematic and scoping reviews related to clinical practice guidelines and dementia24,34,35. An information specialist from University College Cork was consulted to finalise the research terms. The search terms will be refined further based on retrieved abstracts28.

Table 1. Search terms.

Search terms
Patients with cognitive
impairment or dementia
dementia* OR Alzheimer* OR “cognitive impairment”
OR “Cognitive decline” OR “cognitive dysfunction”
Management or
diagnosis of dementia
Diagnos* OR screen* OR “best clinical practice” OR
“disease management” OR manage* OR “principles
of car*” OR “comprehensive car*”
GuidelineGuid* OR “best practice*” OR procedure* OR
“Clinical Practice Guideline*” OR recommend*

Overarching research question: What is the recommended role of the GP in the diagnosis of dementia in CPGs?

Specifically, the review will focus on the following questions:

  • 1. What CPGs on dementia care include a focus on the diagnostic process in the general practice setting?

  • 2. What are the recommendations regarding the role of the GP in the clinical assessment, investigation, and diagnosis of dementia?

  • 3. What is the recommended referral process outlined in CPGs when referring a patient with suspected dementia from primary to secondary care?

  • 4. What are the CPG recommendations regarding dementia diagnostic criteria?

  • 5. With specific reference to the introduction of biomarkers and novel disease modifying therapies for AD, what are the recommendations regarding the diagnostic process in general practice?

2. Identifying relevant studies

Searches will be carried out on databases of peer-reviewed literature (PubMed, CINAHL, Embase, PsycINFO, Cochrane Library). We will use the alerts feature on databases to keep up to date with any new publications throughout the course of the review. Given that many CPGs may not be published in peer-reviewed databases, we will primarily search the grey literature. The grey literature search will include Lenus (the Irish Health Repository), National Institute for Health and Care Excellence (NICE) and Scottish Intercollegiate Guideline Network (SIGN) websites and generic search engines, i.e. Google and Google Scholar (first 200 citations). In addition, we will search appropriate databases for guidelines including, but not limited to, Guideline Central, Guidelines International Network, UpToDate, TRIP, and the Agency for Healthcare Research and Quality, using combinations of the keywords used in the bibliographic database search. We will also search the websites of GP professional organisations nationally and internationally, as guidelines are often made available for GPs through these platforms. Where dementia guidelines are unavailable (or inaccessible) on the professional organisation websites, we will contact them via email to request a copy. Google Translate will be used to increase the likelihood of a response from international GP organisations. Where there is more than one guideline from the same author or organisation we will use the most up-to-date version. We will also search the reference lists of all included CPGs.

Searches will be limited to titles and abstracts, and all identified citations will be uploaded to Covidence for screening and data management purposes.

The literature search will be limited to publications from January 2019 to May 2024. These timelines were selected to reflect the evolution of clinical practice and to update the literature since the publication of the most recent CPG on dementia care for GPs in Ireland in 201936. To ensure the comprehensiveness and currency of our review, we will conduct an updated literature search prior to the final analysis. This search will again include the original databases PubMed, CINAHL, Embase, PsycINFO and Cochrane Library, covering the period from the last search date to the present. Any new studies meeting the inclusion criteria will be incorporated into the final synthesis.

3. Study selection

The title and abstract of papers will be screened initially, and full-text papers will then be reviewed for inclusion. Clinical practice guidelines will be translated into English when required. Full-text studies that do not meet the inclusion criteria will be excluded, and the reasons for exclusion will be provided in an appendix in the final scoping review (See Table 2 for inclusion/exclusion criteria). Where there is conflict, another member of the multidisciplinary research team will act as a third reviewer. This systematic team approach to study selection is recommended to ensure rigour28.

Table 2. Eligibility criteria.

Inclusion criteriaExclusion criteria
Papers from the past five years (2019–2024) will be included to gain
up-to-date clinical guidance.
Guidelines for the management or diagnosis of Mild Cognitive
Impairment (MCI), early Alzheimer’s Disease and related dementias.
Evidence-based guidelines produced by national and international
groups to guide clinical practice following formal procedures for
practice guideline development.
Relevant to the diagnosis of dementia in primary care. Relevance
determined by the inclusion of:
          ●  Screening to identify patients with MCI or Dementia
          ●  Clinical assessment
          ●  Diagnosis
          ●  Elimination of other possible causes of symptoms
          ●  Investigation of dementia
          ●  Recommendations for referral
Guidelines in any language.
Guidelines for specific populations, e.g. guidelines for dementia
in young adults or those with ID.
Guidelines not evidence-based or where the guideline
development is not transparent.
Regional guidelines.
Research studies, academic journal articles such as those
examining guideline adherence, compliance, development, or
evaluation.
Editorials.
Conference proceedings and theses.
Study Protocols.
Guidelines specific to genetic testing, risk factors, dementia
prevention, post-diagnosis care, palliative care, treatment or
therapies for the management of dementia.
Guidelines specific for other health professionals, i.e., nurses,
Allied Healthcare Professionals, or caregivers.
Guidelines for use in in-patient hospital settings.
National strategies or policies.
Summaries of CPGs

4. Charting of the data

Data charting involves charting the data according to key issues and themes27. We will also conduct another step to charting, which involves two reviewers independently charting five to ten papers using the form and then consulting to discuss if their approach is consistent28. Therefore, we will develop a draft form to include items such as 1) authors, 2) year of publication, 3) country of origin, 4) aims/ objectives, 5) type of guideline/guidance, 6) clinical history, 7) physical examination 8) cognitive screening tests 9) investigations, 10) exclusion of other diagnosis 11) communication to other healthcare professionals 12) DMTs 13) biomarkers and 14) referral to specialist services. We will review a number of papers using the form and will consult and update the form, as necessary. Following the finalisation of the charting form, we will chart the remaining papers and consult to finalise the charting in an iterative process.

5. Summarising and reporting results

Two reviewers will summarise findings from the extracted data to include a descriptive numerical summary of the characteristics of the included guidelines. The research team will produce a complete synthesis of recommendations for referral from primary care to secondary care. Results will be reported using the PRISMA-ScR guidelines30. Each research question will be reported separately and presented in a tabular form and as a narrative summary.

6. Consultation exercise with stakeholders

Arksey & O’Malley suggested that a consultation exercise with stakeholders is an optional step27. However, Levac et al. and Daudt et al. suggest that this should be required for a scoping review28,29. We will engage with GPs, secondary care specialists, multidisciplinary healthcare professionals and with The Dementia Research Advisory Team (DRAT) of the Alzheimer’s Society of Ireland. DRAT is a group of people living with dementia and carers/supporters who are involved in dementia research as co-researchers.

Conclusions

The findings from this scoping review will inform the development of a dementia diagnosis and management guidance document for GPs in Ireland and will have the potential to inform the development of a referral form to support referral from primary care to secondary care for patients with suspected cognitive impairment or dementia. The imminent introduction of DMTs for Alzheimer's disease underscores the urgency and importance of the early diagnosis of Alzheimer’s disease. GPs will play a critical role in early identification, assessment, and referral to specialist services. This shift will necessitate clear, evidence-informed diagnostic pathways from primary to secondary care, to ensure patients receive equitable, appropriate and timely care. The rigorous and transparent methodology and a strong multidisciplinary team approach will ensure that the guideline and referral form is based on rich data and provides appropriate information to GPs. The research findings will also be submitted for publication in relevant peer-reviewed journals and presented at conferences.

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Cronin M, Jennings A, Perry M et al. Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines [version 2; peer review: 2 approved]. HRB Open Res 2025, 7:46 (https://doi.org/10.12688/hrbopenres.13919.2)
NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.
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Current Reviewer Status: ?
Key to Reviewer Statuses VIEW
ApprovedThe paper is scientifically sound in its current form and only minor, if any, improvements are suggested
Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.
Not approvedFundamental flaws in the paper seriously undermine the findings and conclusions
Version 2
VERSION 2
PUBLISHED 12 Feb 2025
Revised
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Reviewer Report 18 Feb 2025
Emer O'Brien, Department of General Practice, RCSI, Dublin, Ireland 
Approved
VIEWS 6
Thank you for your detailed responses. I think this version of the ... Continue reading
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CITE
HOW TO CITE THIS REPORT
O'Brien E. Reviewer Report For: Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines [version 2; peer review: 2 approved]. HRB Open Res 2025, 7:46 (https://doi.org/10.21956/hrbopenres.15479.r45629)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
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Reviewer Report 13 Feb 2025
Soo Borson, University of Southern California, Los Angeles, USA 
Approved
VIEWS 9
The authors have been ... Continue reading
CITE
CITE
HOW TO CITE THIS REPORT
Borson S. Reviewer Report For: Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines [version 2; peer review: 2 approved]. HRB Open Res 2025, 7:46 (https://doi.org/10.21956/hrbopenres.15479.r45630)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
Version 1
VERSION 1
PUBLISHED 08 Jul 2024
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Reviewer Report 18 Dec 2024
Soo Borson, University of Southern California, Los Angeles, USA 
Approved with Reservations
VIEWS 14
This paper describes a protocol for a scoping review of guidelines for GP diagnosis of dementia. While it's questionable whether a protocol paper for a scoping review requires publication on its own - rather than simply as part of the ... Continue reading
CITE
CITE
HOW TO CITE THIS REPORT
Borson S. Reviewer Report For: Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines [version 2; peer review: 2 approved]. HRB Open Res 2025, 7:46 (https://doi.org/10.21956/hrbopenres.15268.r43930)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
  • Author Response 13 Feb 2025
    Mary Cronin, Department of General Practice, School of Medicine, College of Medicine and Health, University College Cork, Cork, Ireland
    13 Feb 2025
    Author Response
    Many thanks for the very helpful, constructive comments around the ‘why’ of GP diagnosis, the ‘why’ of referral to specialists for diagnosis and also the introduction of DMTs and the ... Continue reading
COMMENTS ON THIS REPORT
  • Author Response 13 Feb 2025
    Mary Cronin, Department of General Practice, School of Medicine, College of Medicine and Health, University College Cork, Cork, Ireland
    13 Feb 2025
    Author Response
    Many thanks for the very helpful, constructive comments around the ‘why’ of GP diagnosis, the ‘why’ of referral to specialists for diagnosis and also the introduction of DMTs and the ... Continue reading
Views
25
Cite
Reviewer Report 25 Nov 2024
Emer O'Brien, Department of General Practice, RCSI, Dublin, Ireland 
Approved with Reservations
VIEWS 25
Thank you for the opportunity to review this scoping review protocol on evidence relating to GP care of patients with dementia.

Below are some comments for consideration by the authors.

Overall
The rational ... Continue reading
CITE
CITE
HOW TO CITE THIS REPORT
O'Brien E. Reviewer Report For: Guideline recommendations on the role of the general practitioner in the diagnosis of dementia: a protocol for a scoping review of clinical practice guidelines [version 2; peer review: 2 approved]. HRB Open Res 2025, 7:46 (https://doi.org/10.21956/hrbopenres.15268.r42855)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
  • Author Response 12 Feb 2025
    Mary Cronin, Department of General Practice, School of Medicine, College of Medicine and Health, University College Cork, Cork, Ireland
    12 Feb 2025
    Author Response
    Many thanks for this helpful review, which raised valid points about the availability and development of Clinical Practice Guidelines and the international context, all of which add value to the ... Continue reading
COMMENTS ON THIS REPORT
  • Author Response 12 Feb 2025
    Mary Cronin, Department of General Practice, School of Medicine, College of Medicine and Health, University College Cork, Cork, Ireland
    12 Feb 2025
    Author Response
    Many thanks for this helpful review, which raised valid points about the availability and development of Clinical Practice Guidelines and the international context, all of which add value to the ... Continue reading

Comments on this article Comments (0)

Version 2
VERSION 2 PUBLISHED 08 Jul 2024
Comment
Alongside their report, reviewers assign a status to the article:
Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested
Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.
Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions

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