Basket | Login

 
 
 
 

Post-diagnostic support (PDS)

Diagnosis, post-diagnostic support

Post-diagnostic support provision across the strategies varied considerably and in some cases it was not evident that it was a distinct service in its own right or that there was a specific commitment to post-diagnostic support (PDS) in the strategies. As such, this section only includes commitments which either directly refer to PDS or were made within the sections around diagnosis.

Information provision

One of the areas of focus amongst many strategies was that of the provision of information following the diagnosis, across areas such as day to day living with the condition, future planning, available services and supports (including welfare/benefits).

This was evident in the Finnish strategy, with the responsibility for information spread across the public sector, third sector etc. Somewhat similarly, Luxembourg also proposed more work on awareness raising in relation to the availability of specialist services that exist for people with dementia outside existing structures for older people.

Greece placed the responsibility for information provision on regional services, including information sharing and awareness raising. It was not apparent if this was on a front-line basis or a more population based approach. Similarly, local memory services in Northern Ireland have responsibility for information provision after diagnosis.

England similarly had a focus on the provision of information after a diagnosis had been made, though had a unique focus on informing people about research opportunities, specifically through its Join Dementia Research programme.

Link/support workers and services

A number of the strategies contained different approaches to PDS services. Of those which included reference to some form of services, a similar theme emerged in the form of a link worker or specific service, going beyond basic information provision e.g. future planning, counselling, referrals etc.

Some strategies were broader in terms of the service offer and which aspects should be included. The Greek strategy committed to establishing a regional person or service which would support the person, whilst the Luxembourg strategy committed to meeting the assessed needs of people with dementia.

These elements were acknowledged within the Slovenian strategy as being crucial for both people with dementia and their carers, referencing the provision of link workers within other countries. Similarly, the Israeli strategy spoke of the need to create comprehensive care plans with the patient and their family immediately after diagnosis, but with less detail as to how this should be done.

Both the German strategic document and Finnish strategy placed responsibility on public providers to deliver support to people after a diagnosis including information about the condition, guidance and advice, counselling services and peer support services.

Ireland and Wales committed (the former within primary care services), to the provision of a key worker/support worker who would co-ordinate each patient’s care, including, information provision, continuity for the person and ensuring they were able to access supports and services. England did not specifically reference the role, but committed to ensuring that all people diagnosed received a similar type of support measured against national standards.

Scotland was more detailed in its commitment, continuing with the guarantee of one year of support from a Link Worker based on Alzheimer Scotland’s “5 Pillars Model of PDS”, for people diagnosed with dementia, whilst also proposing a new way of providing support (using the “8 Pillars Model” developed by Alzheimer Scotland) where a person’s needs were more complex. The 12 month period of support would be made more flexible so that for those still requiring support after this time, the service would continue. The strategy also commits to exploring the provision of these services from primary care settings.

Norway’s strategy covers similar detail to that of Scotland, outlining the importance of ensuring that people receive person-centred, coordinated support and advice after a diagnosis of dementia, proposing to develop and test different models of delivering PDS.

Conversely, Malta was distinct in its proposal to establish a new multidisciplinary team, the Dementia Intervention Team, managed by a Dementia Coordinator. This team would aid individuals with dementia and their relatives by providing information and care coordination (including psychological counselling, development of advance directives etc.).

Other

The Flanders strategy contains a specific focus on the needs of people with early onset dementia, specifically in relation to the provision of high quality psychosocial support, as well as including aspects of choice and affordability. Malta’s strategy also noted the distinct needs of younger persons with dementia following a diagnosis, but did not do so exclusively, as in the Flanders strategy.

 

 
 

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
  • European Union
 
 

Options