Public health guidance to facilitate timely diagnosis of dementia: ALzheimer's COoperative Valuation in Europe recommendations

OBJECTIVE: ALzheimer's COoperative Valuation in Europe (ALCOVE) was a Joint Action co-financed by the European Commission to produce a set of evidence-based recommendations for policymakers on dementia. This paper reports on timely diagnosis. METHODS: Evidence was reviewed from scientific, policy and qualitative research. An online questionnaire was completed by experts from 24 European Union countries detailing current practice. An iterative process with people with dementia, family carers and professionals was utilised to develop recommendations. RESULTS: Advances in the technical aspects of diagnosis have changed what is understood by early diagnosis. Although research into preclinical stages is crucial, diagnosing at these very earliest stages is not recommended as regular practice. On balance, it is suggested that citizens should have access to accurate diagnosis at a time in the disease process when it can be of most benefit to them. The term timely diagnosis is used to reflect this. The diagnosis can help citizens and their families make sense of what is happening and make lifestyle changes and plans for the future. The central principles identified to maximise benefit and to reduce harm associated with diagnosis at an earlier stage included reducing stigma about dementia; respecting the rights of the individual; recognising that how the diagnosis is given will impact on subsequent adjustment and that post diagnostic support are required for the person and their family. Detailed recommendations are provided for timely detection, the diagnostic process, complex diagnoses, response to early cognitive changes and workforce. CONCLUSIONS: The recommendations can be utilised at a local, national and European level to benchmark progress.