Five-country survey of carers highlights continuing delays in dementia diagnosis across countries

Alzheimer Europe Press Release : Berlin, 3 October 2017

Today, at the 27^th Alzheimer Europe Conference in Berlin, Prof. Bob Woods (Bangor University, Wales, United Kingdom) presented the top line results of a five-country survey on the experience of 1,409 carers of a diagnosis of dementia. Amongst the key reported findings

• The majority of participating carers were women (82.8%) in all participating countries (ranging from 75.8% in the Netherlands to 88.4% in Scotland)
• Differences existed with regard to the relationship of the carer to the person with dementia with a majority of participating carers in the Netherlands being spouses or partners (53.7%) whereas the largest group in all other participating countries were the children of the person with dementia (ranging from 45.8% of carers in Scotland to 64.8% in Italy)
• On average, 47% of carers 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%)
• Carers reported that in a number of cases (19.2% in the Netherlands to 31.8% in the Czech Republic and 31.9% in Italy), another condition was diagnosed before the diagnosis of dementia was made.
• The role of healthcare professionals involved in the diagnosis of dementia differs between European countries with the percentage of carers reporting that they first sought help from GPs/primary care ranging from 31.9% in Italy to 83.9% in Scotland.
• Carers also reported differences as to the assessments which are carried out as part of the diagnosis with memory tests being reported by 78.7% of carers in the Czech Republic to 92.8% of carers in Finland, interviews with the person with dementia from 62.3% in the Czech Republic to 86.7% in Italy, blood tests from 31.8% in Italy to 64.2% in Finland, brain scans from 56.1% in the Czech Republic to 84.3% in Finland and lumbar punctures from 1.7% in Scotland to 18.3% in the Netherlands.
• Significant differences exist across European countries as to the percentage of people with dementia being informed about their diagnosis with 59.3% of Italian carers reporting that the person had not been informed about their diagnosis and this percentage falling to 23.2% in the Czech Republic, 8.2% in the Netherlands, 4.4.% in Scotland and 1.1% in Finland

When presenting the findings, Prof. Bob Woods highlighted: “Over 1,400 carers provided invaluable insights into their experiences of the diagnosis of dementia. We were particularly interested to see whether there were differences between people who had been diagnosed more recently (after 2013) compared to those who had been diagnosed earlier. Several countries have dementia strategies and there is growing public and professional awareness. It was encouraging to see that medical professionals were less likely to be a barrier to diagnosis in all countries with the number of professionals considering that nothing was wrong decreasing from 36.8% to 28.7%. We will of course further analyse these results and present them in a scientific paper later this year.”

Welcoming the results, Jean Georges, Executive Director of Alzheimer Europe said: “Thanks to the participating carers, we are better able to understand the existing barriers which still exist across Europe which delay people with dementia and their carers getting a timely diagnosis. The differences across Europe show however that each national system will need to identify specific measures to improve diagnosis rates”.

For further information, contact:

Jean Georges, Executive Director of Alzheimer Europe, 14, rue Dicks, L-1417 Luxembourg, Tel.: +352-29 79 70, Fax: +352-29 79 72, jean.georges@alzheimer-europe.org

Notes to editors:

Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 39 member organisations in 34 European countries. (www.alzheimer-europe.org).

The five-country carers’ survey was conducted in the Czech Republic, Finland, Italy, the Netherlands and in the United Kingdom (Scotland) and was made possible thanks to an educational grant from Roche to Alzheimer Europe, The survey was developed by Prof. Bob Woods from the University of Bangor (Wales, United Kingdom) in collaboration with representatives from Alzheimer Europe, Alzheimer Nederland, Alzheimer Scotland, the Czech Alzheimer’s Society, Federazione Alzheimer Italia and the Finnish Alzheimer’s Society.

The survey was available in five European languages in both on-line and paper versions. The link to the on-line survey was distributed through the participating national Alzheimer’s association and the paper version made available on request or mailed out according to local circumstances. The paper version was not used in the Netherlands. The plan was to achieve a target of 200 completed carer surveys in each of the 5 participating countries. In the end, this number was exceed in each country.

Publication date: 3 October 2017