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In July 2012 the All-Party Parliamentary Group on Dementia concluded that lack of awareness of the benefits of diagnosis was a significant factor in keeping dementia diagnosis rates at unacceptably low levels in the UK.  The report challenged the Alliance to produce a clear statement of the benefits of diagnosis which could be used to improve understanding.

As a result the  DAA Action Group on Diagnosis and Post-Diagnostic Support asked the Department of Health and the DAA itself for funding to carry out a study of the benefits of diagnosis, focusing on outputs aimed at primary care practitioners in the first instance.

This work began in September 2012, and we hope to have an initial report available by the end of the year:  The main elements of the work include:

  • A qualitive survey of DAA members (76 responses received)
  • Structured interviews with key stakeholders
  • A consultation with members of the Royal College of General Practitioners
  • A literature review

It is not our intention to produce an academic study which will stand peer review; that work is already being done by others, and we hope to collaborate with them so our study and theirs' are as joined up as possible.  Our aim is to produce a guide to the main benefits claimed for dementia diagnosis, and signposts to the evidence to support those claims, where that evidence exists.

As outlined above the purpose of this project is to create an output aimed at GPs.  Studies (including the Action Group's own consultation with GPs earlier this year) suggest there are a number of reasons why GPs might hold back when they encounter patients with possible symptoms of dementia.  These include 'therapeutic nihilism', lack of confidence in their ability to correctly identify the symptoms, and a lack of faith in the quality of local post-diagnosis pathways.  Many of them stem in  part from an incomplete understanding of the potential benefits of diagnosis.  We believe that shining a bright light into this dark corner could potentially make a significant difference to patient referral rates in the UK, and hence to diagnosis levels.

However, although the main output we are producing is aimed at GPs, the work that underpins it has the potential to be repurposed, by our group and by others, to help raise awareness of the benefits of diagnosis among many other key audiences, including commissioners, social care practitioners, secondary health specialists and, of course the public at large.