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Significant barriers to timely diagnosis of dementia and access to post-diagnostic support found across five European countries

Significant barriers to timely diagnosis of Alzheimer have been found across Europe, according to a report presented today at the European Parliament.

The findings of the five-country study funded by Alzheimer Europe and led by Prof Bob Woods of Bangor University’s College of Healthcare Sciences identified the following:

 

  • Carers reported significant delays in diagnosis as it took an average of 2.1 years to receive the diagnosis (ranging from 1.6 years in the Czech Republic and Italy to 2.5 years in Scotland). A quarter of the people with dementia had been diagnosed with another condition prior to dementia.
  • At the time of diagnosis, around half of people were at a mild stage of dementia (53%), a third at moderate (36%) and 4% at severe stage. Almost half of the carers (47%) felt that the diagnosis would have been better earlier (ranging from 36.5% in the Netherlands to 52.1% in Italy).
  • Amongst the key identified barriers to earlier diagnosis, carers reported the first professional seen not considering that anything was wrong (33%) or believing it was not worth pursuing a diagnosis (6.6%) and the refusal of the person with dementia to seek help (37.9%).
  • Overall, one in five people with dementia were not informed of their diagnosis. Important differences exist in this respect across countries. In Finland, Scotland and the Netherlands almost every single person with dementia had been informed of their diagnosis (98.9%, 95.6% and 91.8% respectively), whereas in the Czech Republic and in Italy, several people with dementia had not been told about it (23.3 % and 59.3% respectively). 
  • Post-diagnostic support is a still a major issue across Europe. 19% of the carers and 27.9% of people with dementia did not receive any information at the time of diagnosis.  The need for information on coping and living well with dementia and on available services was particularly high (51.1% and 46% respectively). Carers in Finland and in the Netherlands were overall the most satisfied with the information received. Carers in Italy were less happy for all types of information received.
  • The services which carers were most often offered at the time of diagnosis included a contact with a named person or service who could assist them in signposting services or whom they could contact as needed (20.9%), day care (19.2%) and dementia cafes (18.7%). Several carers did not have access to an assessment of their own needs (50.9%), a care plan for the person with dementia (44.6%) and counselling services (44.6%), but would have liked to have used these services.

Prof Bob Woods commented: “Bangor University was pleased to be the academic lead for this European survey. We have shown that family carers of people with dementia benefit from a timely diagnosis, shared well, followed-up with information and support – but far too many families across Europe still do not receive this.”

Olga Sehnalová, MEP (Czech Republic) who hosted the lunch-time debate, welcomed the survey findings:

“As a Member of the European Parliament and the European Alzheimer’s Alliance, I am interested in how European countries differ in their approaches to dementia. Despite the growing recognition of dementia as a public health priority and the development of national dementia strategies, the Alzheimer Europe survey highlighted that important barriers to timely diagnosis continue to exist. Although in the Czech Republic, the time to diagnosis is relatively short compared to other countries, we cannot consider it a success that it takes more than one year and half. I hope that EU initiatives such as the EU Joint Action on Dementia will identify good practices and make recommendations on how to improve timely diagnosis and post-diagnostic support across all European countries.”

Co-host Sirpa Pietikäinen, MEP (Finland) and Vice-Chairperson of the European Alzheimer’s Alliance stressed:

“I was delighted to see that people with dementia in Finland were systematically informed about their diagnosis and included in care planning decisions. Despite this, the delays before receiving a formal diagnosis on dementia remain significant. Across Europe, we need to continue to invest in awareness raising campaigns of the general public, medical training of general practitioners and specialists and address some of the system delays when it comes to referrals and access to diagnostic services.”

Publication date: 26 June 2018