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Diagnosis/ assessment of dementia

Diagnosis, post-diagnostic support

All of the strategies acknowledged the importance of getting a timely diagnosis of dementia, to allow for effective treatment and interventions, to allow the person to plan for the future and to ensure services and supports can be put in place to help the person live well with the condition for as long as possible.

Each strategy focused on different aspects of diagnosis, with some referring to the tools used to achieve the diagnosis, whereas others focus on the process of receiving a diagnosis. Although all strategies noted the importance of a timely diagnosis, only Denmark and Wales had specific targets relating to increasing the number of people diagnosed.

Process of receiving a diagnosis

Referral systems were a focus for many strategies, with many identifying that the referral and care pathways between primary and secondary healthcare settings, required improvement, both in relation to diagnosis and management of the condition. This was seen as especially true for more complex cases where specialist services may be required. These elements were seen as crucial to a timely and well-coordinated diagnosis, and were found in the Cypriot, Czech, Danish, Irish, Maltese, Northern Irish and Welsh strategies.

Italy was the only country to make reference to a multi-disciplinary team approach covering both diagnosis and coordination of interventions for dementia (although the highly variable nature of implementation was noted).

Malta identified the need to reduce waiting times for appointments with specialists for individuals with suspected cognitive impairment, whilst England committed to a maximum national average for an initial assessment of six weeks following a GP referral, with no-one waiting months for an initial assessment of dementia.

The priorities of the neurodegenerative strategies are similar in nature to those of the national dementia strategies.

Spain highlights the need for responsive referral processes between primary and secondary health for the early detection of neurodegenerative conditions, with specific programmes for people with high genetic risk. The French strategy similarly prioritises the quality of diagnosis for people with a neurodegenerative condition, with priority given to establishing shared assessments and guarantees of access to personalised care.

Memory clinics/ services

Another common area within strategies related to where a diagnosis should take place, whether in primary settings or secondary settings, and whether this should be in a dementia-specific service such as a memory clinic. From the services described in the strategies, there appeared to be two distinct approaches to the delivery of diagnostic services – one focused on primary care, the other on regional services.

Where a primary care approach was proposed, the diagnostic process was primarily driven through primary care, with initial assessment at this level and followed by input from specialist services (usually secondary healthcare such as old age psychiatry, neurology etc.) where necessary. Follow-up through provision of information or other interventions was also advocated in the Irish, Finnish, Greek, Maltese and Welsh strategies.

The Norwegian approach identified the need for greater cooperation between different specialists and personnel, though noted that specialist health services and the municipalities had their own agreements. The Swiss approach proposed the establishment and expansion of regional, networked centres which would have responsibility for diagnostic services.

Northern Ireland did not commit to one location or another, instead proposed a broader Memory Service which would provide a minimum level of service regardless of location. Flanders was the only strategy to specifically address dementia in younger people, setting out the cooperation between different types of memory/cognitive services in relation to general hospitals and ongoing monitoring.

Training for professionals

Regardless of the service approach for diagnosis, a number of strategies highlighted that training for professionals was crucial in the detection and diagnosis of dementia. In the majority of strategies, the focus was on the need for awareness, clinical guidance and training of primary care professionals for the detection of dementia. This was present in the Danish, Finnish, Flemish, Greek, Irish, Israeli, Luxembourg, Maltese, Northern Irish, Slovenian and Spanish strategies.

Flanders, Finland and Israel also highlighted the need for pharmacists, occupational health professionals and community practitioners, respectively, in recognising and identifying individuals who may be at risk of, or may have, dementia. As part of this, Flanders published an e-learning module (FAZODEM) specifically for pharmacists.

With specific relation to the process of diagnosis, the Slovenian strategy was the only one to refer to the importance of training secondary healthcare specialists in specific diagnostic testing procedures (e.g. lumbar punctures).

Tools for assessment/clinical guidelines

In addition to training, many of the strategies provided specific information on the development of tools or resources to support the process of assessing or diagnosing dementia. Additionally, some strategies focused on the need for clinical guidelines.

The Luxembourg strategy committed to a more thorough diagnostic test for secondary care, based on national pathways for diagnosis.

Denmark and Wales included the need to develop a robust clinically validated dementia assessment tool(s) for use in the Welsh language and commission research into assessment of dementia. Switzerland, in addition to the use of more tools for the early detection of dementia, was distinct in its commitment to specific instruments for interdisciplinary assessments. Beyond solely health and social care, Germany took a similar approach for social security, committing to reviewing the assessments of capacity and ability for people with dementia.

Additionally, Denmark, Germany, Northern Ireland, Norway and Scotland all identified the need for the adoption of national clinical guidelines for dementia, with the latter also tying this into guidelines for providers on a staged health concept. Similarly, some strategies including those for the Czech Republic, Malta and Portugal all indicated their intention to follow internationally recommended standards, with the Portuguese strategy specifically identifying the WHO guidelines.

Public awareness

The Flanders strategy was an exception insofar as whilst most strategies included some level of public awareness campaign, however, this was the only which specifically linked the issues of receiving a timely diagnosis to such a campaign.

Other

There were other aspects included within the strategies related to diagnosis which were distinct from matters purely related to the process of diagnosis itself. A ‘key outcome’ contained in the Scottish strategy identified the purpose of timely diagnosis as a means to ensure that individuals could be involved in the process of their diagnosis and care planning.

Both Ireland and Wales acknowledged the need to examine the issues around attempting to diagnose dementia in people with learning disabilities, as a result of this population’s susceptibility to younger onset dementia. Wales also committed to exploring the needs of people with dementia who also have some form of sensory loss.

The Norwegian strategy noted that more needed to be done to ensure that the distinct needs of people from Black, Asian and Minority Ethnic origin were considered in relation to the diagnostic process.

The Greek strategy was notable for its intention to create a standardised register of people diagnosed with dementia to help improve data recording to inform policy-making. As part of this, the Greek system proposed including additional information (e.g. degree of disability) to ensure they receive support commensurate with their needs. Similarly, Ireland’s strategy committed to ensuring appropriate recording and coding of dementia in primary care settings and the development of practice-based dementia registers. The Northern Irish strategy is unique in its reference to a statutory regulatory service (the Regulation and Quality Improvement Authority) reviewing the effectiveness of diagnostic and memory services.

Portugal identified the need to carry out a survey to establish what health and social care resources existed in each region.

 

 
 

Last Updated: Monday 29 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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