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PL2: Dementia strategies and policies

Detailed programme, abstracts and presentations

PL2: Dementia strategies and policies

PL2.1 A New European Joint Action

HUGGINS Geoff

The session will describe the objectives and structure of the new joint action on dementia and how it builds on the previous work taken forward under Alcove. The focus of the joint action is diagnosis and support, care co-ordination, the quality of residential care for those living with dementia and the development of dementia friendly communities.  In terms of approach the joint action will have a clear focus on implementation as well as evidence of best practice and will work to accelerate the uptake of best practice.

PL2.2 “A positive impact of collaboration in the Joint Programme on Neurodegenerative Diseases Research (JPND) on the National Research Policy”

VOLASKO Peter

JPND is relatively well-known and appreciated among the following stakeholders in Slovenia: ND field researchers as well as some clinicians and diagnosticians, policy makers at the Ministry of Education, Science and Sport and the Ministry for Health, “Young Research Leaders” who are promoting the campaign against Dementia, Slovenian Members of the European Parliament, some civil society organisations dealing with this phenomenon (e.g. “Spominčica”) and other interested public.

Slovenian researchers are actively performing in JPND projects and initiatives. So far they have participated only in the first call – harmonisation of biomarkers. Two Slovenian research groups were successful in this call which is an excellent result for a small country like Slovenia. Unfortunately due to cuts in the National State budget we have not been able to participate in more calls so far.

Concerning the initiatives in Slovenia for supporting researchers willing to apply for JPND funding, at the moment there exist only the strivings of the Directorate for Science at the Ministry of Education, Science and Sport for enabling the funds to be reserved in the 2016 National State budget for participation in the planned JPND calls for that year.

When asking ourselves what are the main benefits for Slovenia to participate in JPND we can confirm that the benefits are multi-fold. Our participation in JPND is stimulating the Ministry of Health to develop a National Plan for addressing Dementia or Neurodegenerative Diseases. As well, Slovenian researchers are re-focusing on this area and follow the funding calls. The JPND Strategic Research Agenda is a kind of “lighthouse” for Slovenian policy makers in diverse Ministries and Research Performing Organisations. In addition, an informal group of the “Young Leaders for Promotion the Dementia-related issues” is being created which is influenced by JPND efforts in this area. Last but not least, a project proposal for a “Teaming” call within the EU research and innovation programme Horizon 2020 has been successful in the 1st phase also due to the important component of the Dementia issues. 

JPND efficiently addresses the problems which are already very serious in our country and will be even more dramatic in the future. Therefore we have to prepare adequately and quickly for these new phases of challenges ahead. We are trying to stimulate Slovenian Ministry of Health and other Ministries to more actively organize themselves towards creating effective solutions for the increasing problems deriving from the Dementia challenge. Participation in the MB of JPND supplies us with comprehensive information and understanding of the complexity of the phenomenon. Since the size of the global challenge of the Alzheimer disease is so dramatically expanding we all have to engage now and fully! JPI JPND is addressing this challenge bravely and efficiently. It is even providing some solutions already!

PL2.3 Changing the perceptions and image of dementia

ORHEIM Alv

A few years ago, my wife Berit very gently questioned my memory loss and apparent loss of concentration. I was baffled. Me, only 60 years old? My grandpa had dementia, but he was 93 when he died. I could not have these old-man symptoms. The eye-opener to me came when several members of the audience after a lecture in geology told me that I had repeated myself far too often. During that lecture I could not remember which topics had been covered, and for the sake of logical arguments, I thought it better to repeat myself once more, or once more or even more! Having had this fairly rough awakening, I realised my best option was to face dementia with open eyes, and accept it as a fact of life. And of course although no one is pleased when I tell them of my condition, everybody along my road has joined in and provided necessary support. In the general community, there is a need for basic knowledge transfer. The primary facilitators of this are people with dementia themselves and their carers.

In this presentation, I am going to talk about how my own perception of dementia has changed as a result of my personal experience. I will also share my experience of how people have reacted to me having dementia.

PL2.4 The OECD approach to comparing and benchmarking dementia care

PEARSON Mark

Most OECD countries have implemented policies to improve dementia care and many have published dementia strategies. There is a strong desire to be able to compare policies and their impact internationally, but this is not currently possible. There is little data on dementia and no internationally comparable indicators of the quality of care.

The OECD has begun working with our member countries and other partners to change this situation. Our approach is two-pronged: we will make the best comparisons that are possible now; and we will lay the foundations so that we can make better comparisons in the future, focusing on the quality of care and outcomes.

In the absence of internationally comparable data on dementia, we can make qualitative comparisons of policy approaches. Our starting point is a policy framework jointly developed by the OECD and WHO, and which has broad international support from OECD member countries and attendees at the First International Conference on Global Action Against Dementia (hosted by the WHO in March 2015). The framework identifies ten key objectives that all countries should consider and highlights possible policy approaches for each. By asking countries systematic questions about their policies and supporting evidence and evaluations, we can map out and compare what countries are doing now.

In the longer term, our ambition is to develop robust, internationally comparable indicators of the quality of dementia care and outcomes for people with dementia and their carers. The first step is to comprehensively review the current state of play in terms of what countries collect, what is possible with existing data systems and what changes would be needed to collect better information on dementia. This will provide us with the information we need to map out the path towards collecting internationally comparable indicators.

 

 
 

Last Updated: Thursday 24 September 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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