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Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review
Open accessAbstract
BACKGROUND: The diagnosis of dementia in primary care is perceived as a problem across countries and systems, resulting in delayed recognition and adverse outcomes for patients and their carers. Improving its early detection is an area identified for development in the English National Dementia Strategy 2009; there are thought to be multiple benefits to the patient, family, and resources by doing this. The aim of this review was to carry out a rapid appraisal in order to inform the implementation of this policy. METHOD: Publications in English up to August 2009 relating to barriers to the recognition of dementia, were identified by a broad search strategy, using electronic databases MEDLINE, EMBASE, and psycINFO. Exclusion criteria included non-English language, studies about pharmacological interventions or screening instruments, and settings without primary care. RESULTS: Eleven empirical studies were found: 3 quantitative, 6 qualitative, and 2 with mixed methodologies. The main themes from the qualitative studies were found to be lack of support, time constraints, financial constraints, stigma, diagnostic uncertainty, and disclosing the diagnosis. Quantitative studies yielded diverse results about knowledge, service support, time constraints, and confidence. The factors identified in qualitative and quantitative studies were grouped into 3 categories: patient factors, GP factors and system characteristics. CONCLUSION: Much can still be done in the way of service development and provision, GP training and education, and the eradication of stigma attached to dementia, to improve the early detection and management of dementia. Implementation of dementia strategies should include attention to all three categories of barriers. Further research should focus on their interaction, using different methods from studies to date.
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“Personal style, defined as the perceived fit between the intervention and the preferred style of clinical practice, such as clinicians’ communication style [78, 79], personality [54] and philosophical opposition to the intervention [69, 76], were presented exclusively as barriers.”
From Achieving change in primary care—causes of the evidence to practice gap: systematic reviews of reviews (2015) · cites this paper as [79]
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“Perceptions of barriers may be socially constructed, and addressing them may not necessarily improve implementation [79].”
From Achieving change in primary care—causes of the evidence to practice gap: systematic reviews of reviews (2015) · cites this paper as [79]
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“Previous systematic reviews, which focussed on interventions to improve primary care dementia diagnosis and management (Koch et al., 2010; Perry et al., 2011), found that educational interventions, particularly those requiring active participation, increased the likelihood of GPs suspecting…”
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“General practitioners in Western countries perceived lack of knowledge of early diagnostic, and some of them seemed to attach stigma to the condition of dementia by assuming that the caregiver/patient did not want a diagnosis until the symptoms were so severe that it was inevitable [48].”
BackgroundInterprofessional education in community-based Alzheimer’s disease diagnosis and treatment
McCaffrey, R. G., Tappen, R. M., Lichtstein, D. M., & Friedland, M. (2013) · Journal of Interprofessional Care · doi:10.3109/13561820.2013.817384 · Cited by 35
“…implications for primary healthcare providers, including physicians and nurse practitioners, who play a significant role in early detection, diagnosis and treatment of dementia as well as assisting patients and families to cope with the burdens of this progressive disease (Koch & Lliffe, 2010).”
BackgroundBartfay, E., Bartfay, W. J., & Gorey, K. M. (2013) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.3934 · Cited by 35
“Koch and Iliffe (2010) put forward a mounting evidence of missed diagnosis of dementia in the primary care settings.”
BackgroundDiagnosis of dementia in Australia: a narrative review of services and models of care
Ng, N. S. Q., & Ward, S. A. (2018) · Australian Health Review · doi:10.1071/ah17167 · Cited by 36
Hwang, A. B., Boes, S., Nyffeler, T., & Schuepfer, G. (2019) · PLoS ONE · doi:10.1371/journal.pone.0219569 · Cited by 38
Hsiao, H., Liu, Z., Xu, L., Huang, Y., & Chi, I. (2015) · Gerontology & Geriatrics Education · doi:10.1080/02701960.2014.990152 · Cited by 35
Stewart, T. V., Loskutova, N., Galliher, J. M., Warshaw, G. A., Coombs, L., Staton, E. W., Huff, J., & Pace, W. D. (2014) · The Journal of the American Board of Family Medicine · doi:10.3122/jabfm.2014.02.120284 · Cited by 36
“The reasons for this delay are complex: clinicians may not recognize early symptoms; patients, clinicians, and families may deny or fail to recognize cognitive concerns as part of the dementia process; the public and clinicians may believe that cognitive impairment is normal in aging; and interventions by caregivers m…”
BackgroundAnalysis of Barriers to Cognitive Screening in Rural Populations in the United States
Wiese, L. K., Williams, C. L., & Tappen, R. M. (2014) · Advances in Nursing Science · doi:10.1097/ans.0000000000000049 · Cited by 33
Attitudes to diagnosis and management in dementia care: views of future general practitioners
Tang, E. Y. H., Birdi, R., & Robinson, L. A. (2016) · International Psychogeriatrics · doi:10.1017/s1041610216001204 · Cited by 33
Sannemann, L., Müller, T., Waterink, L., Zwan, M. D., Wimo, A. B., Stomrud, E., Pinó, S., Arrufat, J., Rodríguez‐Gómez, O., Benaque, A., et al. (2021) · Alzheimer s & Dementia Diagnosis Assessment & Disease Monitoring · doi:10.1002/dad2.12130 · Cited by 32
The unmet palliative care needs of those dying with dementia
Dempsey, L., Dowling, M., Larkin, P. J., & Murphy, K. (2015) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2015.21.3.126 · Cited by 33
“Koch and Iliffe (2010) identified that dementia is not diagnosed in time and there is a reluctance to diagnose dementia due to diagnostic uncertainty, fear of labelling or stigma within families or the community, lack of support, time and financial constraints.”
Diagnosing dementia in Dutch general practice: a qualitative study of GPs’ practices and views
Prins, A., Hemke, F., Pols, J. J., & van Charante, E. P. M. (2016) · British Journal of General Practice · doi:10.3399/bjgp16x685237 · Cited by 32
Neural correlates of altered insight in frontotemporal dementia: a systematic review
Muñoz‐Neira, C., Tedde, A., Coulthard, E. J., Thai, N. J., & Pennington, C. M. (2019) · NeuroImage Clinical · doi:10.1016/j.nicl.2019.102066 · Cited by 32
“Aside from this, the heterogeneity of the pathology that causes FTD (Cairns et al., 2007; Mackenzie et al., 2009; Mackenzie et al., 2010; Kovacs, 2016) can result in syndromes characterised by different symptoms, either predominantly behavioural, language associated or motor (Rascovsky et al.,…”
Jeffares, I., Rohde, D., Doyle, F., Horgan, F., & Hickey, A. (2022) · BMC Health Services Research · doi:10.1186/s12913-022-07837-2 · Cited by 31
Barriers for access and utilization of dementia care services in Europe: a systematic review
Sorrentino, M., Fiorilla, C., Mercogliano, M., Stilo, I., Esposito, F., Moccia, M., Lavorgna, L., Salvatore, E., Sormani, M. P., Majeed, A., et al. (2025) · BMC Geriatrics · doi:10.1186/s12877-025-05805-z · Cited by 31
Veneziani, F., Panza, F., Solfrizzi, V., Capozzo, R., Barulli, M. R., Leo, A., Lozupone, M., Fontana, A., Arcuti, S., Copetti, M., et al. (2016) · International Psychogeriatrics · doi:10.1017/s1041610216000041 · Cited by 27
Ensuring the Success of Interprofessional Teams: Key Lessons Learned in Memory Clinics
Lee, L., Hillier, L. M., & Weston, W. W. (2014) · Canadian Journal on Aging / La Revue canadienne du vieillissement · doi:10.1017/s0714980813000652 · Cited by 27
“A systematic review of barriers to dementia diagnosis in primary care identifi ed challenges at three levels: patient or societal factors, physician factors, and system factors (Koch & Iliffe, 2010 ).”
BackgroundIslam, M. M., Parkinson, A., Burns, K., Woods, M., & Yen, L. E. (2020) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2020.103550 · Cited by 27
Timely Diagnosis of Dementia: Can we do better?
Phillips, J., & Pond, D. (2011) · Cited by 27
Time to Diagnosis and Factors Affecting Diagnostic Delay in Amyotrophic Lateral Sclerosis
Richards, D., Morren, J. A., & Pioro, E. P. (2021) · Exon Publications eBooks · doi:10.36255/exonpublications.amyotrophiclateralsclerosis.diagnosticdelay.2021 · Cited by 28
Lü, Y., Liu, C., Fawkes, S. A., Wang, Z., & Yu, D. (2022) · BMC Family Practice · doi:10.1186/s12875-022-01716-9 · Cited by 29
Ptacek, S. G., Modéer, I. N., Kåreholt, I., Fereshtehnejad, S., Farahmand, B. Y., Religa, D., & Eriksdotter, M. (2016) · Age and Ageing · doi:10.1093/ageing/afw189 · Cited by 26
“Patient barriers, such as lack of knowledge and fear of stigma, could delay help-seeking behaviours [19].”
BackgroundWang, J., Xiao, L. D., & Li, X. (2018) · Aging & Mental Health · doi:10.1080/13607863.2018.1426717 · Cited by 26
“As dementia management and care cover a wide spectrum ranging from prevention to palliative care, one-off education or training is unlikely to have much impact (Aminzadeh et al., 2012; Koch et al., 2010).”
BackgroundPond, D. C., Mate, K. E., Stocks, N., Gunn, J. M., Disler, P. B., Magin, P. J., Marley, J. E., Paterson, N., Horton, G. L., Goode, S. M., et al. (2018) · BMJ Open · doi:10.1136/bmjopen-2017-021125 · Cited by 25
Imre, N., Balogh, R., Papp, E., Kovács, I., Heim, S., Karádi, K., Hajnal, F., Kálmán, J., & Pákáski, M. (2019) · Educational Gerontology · doi:10.1080/03601277.2019.1660137 · Cited by 24
“Early and accurate diagnosis, however, requires a number of factors (Koch & Iliffe, 2010), including enough time for patient consultations, suitable conditions for performing cognitive examinations, and naturally, adequate knowledge on dementia from GPs. Lack of knowledge on dementia was found to…”
BackgroundCreavin, S., Noel-Storr, A. H., Langdon, R., Richard, E., Creavin, A. L., Cullum, S. J., Purdy, S., & Ben‐Shlomo, Y. (2022) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd012558.pub2 · Cited by 30
“GPs report lack of time as a barrier to diagnosing dementia (Koch 2010) and report oJen relying on personal observations to make the diagnosis (O'Connor 1993) whereas pen-and-paper tests are used by a minority of people (Pond 2013).”
BackgroundNegotiating access to a diagnosis of dementia: Implications for policies in health and social care
Koehn, S. D., Badger, M., Cohen, C. A., McCleary, L., & Drummond, N. (2014) · Dementia · doi:10.1177/1471301214563551 · Cited by 25
“Previous research suggests that although PsWD and their families rely on their primary care physician for access to care, physicians may not think they have the training or time to implement these resources with patients (Hum et al., 2014; Koch & Iliffe, 2010; Schoenmakers et al., 2009).”
BackgroundDiagnostic communication in the memory clinic: a conversation analytic perspective
Peel, E. (2015) · Aging & Mental Health · doi:10.1080/13607863.2014.1003289 · Cited by 24
“Appointments with 29 patients and accompanying persons were recorded, and the corpus was repeatedly listened to, in conjunction with the transcripts in order to identify the segments of talk where there was an action hearable as diagnostic delivery, that is where the clinician is evaluating the…”
BackgroundMethodDementia Coding, Workup, and Treatment in the VA New England Healthcare System
Cho, K., GAGNON, D. R., Driver, J. A., Altincatal, A., Kosik, N., Lanes, S., & Lawler, E. V. (2014) · International Journal of Alzheimer s Disease · doi:10.1155/2014/821894 · Cited by 23
“The obstacles to dementia diagnosis in primary care are well documented and include important systems issues such as time constraints and lack of support services [12].”
BackgroundInfluence of rurality on diagnosing dementia in Australian general practice
Greenway‐Crombie, A. M., Snow, P. C., Disler, P. B., Davis, S. J., & Pond, D. C. (2012) · Australian Journal of Primary Health · doi:10.1071/py12008 · Cited by 23
“There is also reluctance by GPs to disclose thediagnosis of dementia due topatient and familydenial of the diagnosis and the potential damage to the patient doctor relationship (Koch and Iliffe 2010).”
BackgroundInfluentialDiagnosing Alzheimer’s disease: are we any nearer to useful biomarker-based, non-invasive tests?
Fletcher, L. C. B., Burke, K. E., Caine, P., Rinne, N., Braniff, C. A., Davis, H., Miles, K., & Packer, C. (2013) · Europe PMC (PubMed Central) · doi:10.3205/hta000107 · Cited by 23
“Because of diagnostic uncertainty, particularly in early disease, there is an unmet need for a validated, sensitive, noninvasive, relatively cheap and easily applied test that could distinguish, or help to distinguish, between pathological and age-related cognitive decline, and perhaps between the different underlying…”
BackgroundFrailty Screening and Case-Finding for Complex Chronic Conditions in Older Adults in Primary Care
Lee, L. S., Patel, T., Hillier, L. M., Locklin, J., Milligan, J., Pefanis, J., Costa, A. P., Lee, J. J., Slonim, K., Giangregorio, L., et al. (2018) · Geriatrics · doi:10.3390/geriatrics3030039 · Cited by 24
Zerafa, N., & Scerri, C. (2016) · International Journal of Clinical Pharmacy · doi:10.1007/s11096-016-0380-8 · Cited by 23
“However, as reported elsewhere with respect to management of dementia patients in primary care [19], our data suggests that learning from experience cannot be relied on as an effective educational tool.”
BackgroundBentley, M., Kerr, R. H., Ginger, M., & Karagoz, J. (2019) · Australian Journal of Primary Health · doi:10.1071/py18079 · Cited by 22
Mini-Cog for the detection of dementia within a primary care setting
Seitz, D. P., Chan, C., Newton, H. T., Gill, S. S., Herrmann, N., Smailagic, N., Nikolaou, V., & Fage, B. A. (2021) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd011415.pub3 · Cited by 28
Lanzi, A. M., Saylor, A. K., & Cohen, M. L. (2022) · American Journal of Speech-Language Pathology · doi:10.1044/2022_ajslp-21-00266 · Cited by 22
Schütze, H., Shell, A., & Brodaty, H. (2018) · BMC Medical Education · doi:10.1186/s12909-018-1295-y · Cited by 22
Lee, J., Kim, J., Park, A., Hong, R.-K., Ko, M., Heo, M., Kim, H., & Chung, J. Y. (2023) · Journal of Alzheimer s Disease · doi:10.3233/jad-221299 · Cited by 21
“CCT can overcome the primary drawbacks of conventional interventions in clinical settings, which are mostly face-to-face interactions using pen-and-paper exercises or oral tasks [23] that require intensive monetary, time, and space resources and the challenge of monitoring patient adherence [24].”
BackgroundLinden, I., Hevink, M., Wolfs, C. A. G., Perry, M., Dirksen, C. D., & Ponds, R. (2022) · Aging & Mental Health · doi:10.1080/13607863.2022.2084505 · Cited by 21
“(3) Barriers mentioned by GPs to discuss starting a diagnostic trajectory for dementia may be solved, when this knowledge is implemented in HCPs’ (communication) training (Aminzadeh et al., 2012; Koch & Iliffe, 2010; Mansfield et al., 2019).”
BackgroundGjøra, L., Strand, B. H., Bergh, S., Bosnes, I., Johannessen, A., Livingston, G., Skjellegrind, H. K., & Selbæk, G. (2024) · Journal of Alzheimer s Disease · doi:10.3233/jad-240037 · Cited by 21
“Family physicians might avoid disclosing the diagnosis to the patient or the family, due to the former’s concerns about consequences for the patient-physician relationship [42].”
BackgroundLee, L. S., Hillier, L. M., & Weston, W. W. (2017) · Gerontology & Geriatrics Education · doi:10.1080/02701960.2017.1373350 · Cited by 23
“The barriers to providing high-quality dementia care in primary care have been well documented (Aminzadeh, Molnar, Dalziel, & Ayotte, 2012; Koch & Iliffe, 2010).”
Background
Metadata
- Authors
- the EVIDEM-ED project, Koch, T., & Iliffe, S.
- Affiliations
- The Royal Free Hospital (GB)
- Corresponding author
- Koch, Tamar
- ORCID
- Iliffe, Steve
- Venue
- BMC Family Practice
- Published
- 2010-07-01
- Volume
- 11
- Issue
- 1
- Pages
- 52-52
- ISSN
- 1471-2296 (ISSN-L)
- PMC
- PMC2909966
- OpenAlex
- W2049017668
- Cited by
- 275
- References
- 39
- Citations by year
- 2026: 15 · 2025: 19 · 2024: 15 · 2023: 12 · 2022: 25 · 2021: 15 · 2020: 26 · 2019: 24 · 2018: 23 · 2017: 8 · 2016: 11 · 2015: 19 · 2014: 15 · 2013: 23 · 2012: 15
- FWCI
- 2.18
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Family Practice (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- National Institute for Health and Care Research (RP-PG-0606-1005)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Family Practice › Primary Care and Health Outcomes
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- dementia, barriers to diagnosis, early detection, primary care, general practitioners, dementia stigma, diagnostic uncertainty, diagnosis disclosure, general practice training, time constraints, financial constraints, National Dementia Strategy, dementia management
- MeSH terms
- Attitude of Health Personnel, Dementia, Humans, Primary Health Care, Disease Management, Early Diagnosis
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