Understanding why dementia is underdiagnosed in primary care

Student thesis: Doctoral Thesis


Background: Dementia is typically identified in primary care by General Practitioners (GPs). However, current research estimates that up to 50% of people with dementia do not have a formal diagnosis in their Electronic Health Record (EHR). Benefits to diagnosis are widely reported and accepted as a key way to ensure cost-effective quality care is provided consistently to all patients. As such, decreasing the underdiagnosis of dementia has become a key objective for governmental policy internationally and within the UK. The research in this doctoral thesis aimed to examine the reasons for underdiagnosed dementia in England. Accordingly, a systematic review and two empirical studies were conducted to address the aims of this thesis.

Methodology: Guided by a critical realist epistemology, this thesis employed mixed methods, emphasising qualitative and narrative approaches. Together, these studies examined GPs’ attitudes and behaviours when presented with possible dementia in older people. The systematic review integrated what is currently known about GPs’ knowledge, attitudes, and behaviours when diagnosing dementia. The first empirical study qualitatively explored why GPs may choose not to pursue a diagnosis of dementia by examining specific cases. The second study administered an online questionnaire to explore the variation in GP recording practices when presented with possible dementia in older patients.

Results: The systematic review uncovered five superordinate themes that shape GPs’ ability to diagnose dementia: (1) clinical uncertainty; (2) nihilism; (3) stigma; (4) person-centred care, and; (5) delayed diagnosis. These findings indicated many complex and interacting reasons why a diagnosis of dementia may not occur.

From an empirical qualitative study, we uncovered several reasons why GPs might not pursue the diagnosis-to-care pathway. We noted that GPs conceptualised diagnosis and care as separate processes; they provided examples of seemingly optimal care without a formal diagnosis.

In an online clinical vignette study, we found that GPs recognise dementia well, but diagnose as late as possible. Additionally, these findings indicate that GPs can provide appropriate care to PwD without a formal diagnosis of dementia. Consequently, the presence of a dementia diagnosis code is not a good proxy for measuring dementia care.

Taken together, the findings indicate many instances when GPs do not actively pursue a suspicion of dementia. Whilst there are many complex reasons why this occurs, including clinical uncertainty, nihilism, and stigmatisation, these are underpinned by a patient-centred and holistic approach to care. Essentially, there are cases where GPs’ do not perceive a diagnosis of dementia to be in a patient’s best interest. In contrast, governmental policy has framed a dementia diagnosis as universally beneficial and hence, in the best interest of all patients. These divergent viewpoints indicate a significant misalignment between governmental policy and clinical practice and partially explain why dementia has a relatively high rate of patients without a formal diagnosis.

Conclusion: Patients with undiagnosed dementia do not necessarily have unrecognised dementia. There are many instances where GPs have recognised the illness for some reason but have not pursued a diagnosis. In cases of under-recorded dementia, there may be clear indications of GP suspicions within the free text or unstructured parts of their EHRs. Findings from this thesis have illustrated that a diagnosis is not always necessary for optimal care provisions to be in place. Ultimately, this thesis argues that the current policy position, assuming the absence of a formal dementia diagnosis indicates substandard or neglectful patient care, is unwarranted. The evidence presented in this thesis demonstrates that where a formal diagnosis has not occurred, it may be the result of a considered choice based on professional judgement that puts patient care and wellbeing at the fore.
Date of AwardMar 2023
Original languageEnglish
Awarding Institution
  • University of Brighton
SupervisorElizabeth Ford (Supervisor), Flis Henwood (Supervisor) & Helen Smith (Supervisor)

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