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P20: Dementia policies and strategies II

Detailed programme, abstracts and presentations

P20: Dementia policies and strategies II

P20.1. Public policies and research about dementia: interdisciplinary reflections for improving care

DESANA Marie-Odile

France Alzheimer has always been aware of the stakes of research both for understanding the disease and its causes and for the development of therapeutic strategies and care process solutions. As such, the association has always given high priority to research since its beginnings. 

It has always been particularly committed to fundamental and clinical research and participates in scientific progress by contributing one million euros each year to medical and human and social sciences research.

However, supporting research is not the sole responsibility of the associative field. It belongs to society as a whole, starting with public authorities.

Indeed, three million French are concerned. And in light of the worrying projections, research is more than ever a public health issue. Some public policies have been implemented these past few years and have yielded results, but they need to be sustained and intensified.

For its 30th anniversary, France Alzheimer and related diseases is organizing, on May 21st 2015, a one day convention to assess progress and identify the challenges of research for the years to come.

As we are convinced that it is the interaction of various fields of study which enables the efficient development and constant improving of the care process for those suffering from Alzheimer’s disease, our Association wishes to use this convention to promote an interdisciplinary and decompartmentalized approach. We will therefore attempt to establish the reciprocal links between research and public policy and will reflect on how they can both affect and complement each other.

Two central points will be addressed:

  • The prevention of Alzheimer’s disease and public policy challenges: current state of research progress. 
  • The role of human and social sciences in the daily care of the sick and their families.

This convention is geared towards all parties involved in research: political and institutional players, members of public administration, researchers and academics, major associations and federations, private sector sponsors, Association donors.

Review of the day’s talks and debates and summary of main learnings.

P20.2. The national alliance for people with dementia

JANSEN Sabine

On World Alzheimer’s Day 2012 the German ministers for health and senior citizens initiated the National Alliance for People with Dementia. This is part of the “Demographic strategy” of the German government.

Participants of the National Alliance are different stakeholders from medical organisations, insurances, welfare organisations, care organisations and so on. The German Alzheimer Association was asked to cooperate as a co-chair besides the two ministries. Within two years activities in four fields of action were defined by the members of the alliance. These are information and research, public awareness, support of people with dementia and their caregivers and improvement of the care system for people with dementia. The implementation has started and a monitoring process has been developed.

To get people with dementia involved in the working process of the alliance the German Alzheimer Association has organised a participation process with members of the groups for people with early onset dementia.

P20.3. Croatian Alzheimer Alliance – powerful instrument in obtaining consensus on Strategy to fight Alzheimer’s disease and other dementias

MIMICA Ninoslav, KUŠAN JUKIĆ Marija

In order to develop a common national strategy to combat Alzheimer’s disease and other demetias we believe that the best and most effective way was to form an alliance of interested groups, which would develop and adopt that basic consensus document. Croatian Society for Alzheimer’s disease and Old Age
Psychiatry, CroMA and Alzheimer Croatia were the main initiators and endeavoured to gain more members to Croatia Alzheimer Alliance (CAA). The initial public invitation to join the CAA was sent to all interested parties, and the associations listed below have joined the CAA: Croatian Society for Clinical Pharmacology and Therapy, Croatian Society for Neuroscience, Croatian Association of Palliative Medicine, Croatian Society for the Protection and Promotion of Mental Health, Croatian Neurological Society, Croatian Psychiatric Association.
The draft proposal of "The Croatian Strategy for Fight Against Alzheimer's Disease (2015 – 2020)" was assembled by members of the Croatian Society for AD and Old Age Psychiatry and Alzheimer Croatia, enveloped the national specificities on the basis of the existing plans of other countries taking into account the recommendations and advices of Alzheimer's Disease International and Alzheimer Europe. The draft of strategy was published in the congressional supplement Neurologia Croatica and for the first time was presented and discussed on round table during CROCAD-14 in Brela, Croatia. The second public presentation was during national congress of psychiatrists in Zagreb. At the moment, altogether, 21 professional associations and NGOs joined the Croatian Alzheimer Alliance. The public discussion will go on during the first half of the year 2015, when hopefully the final text of the Croatian National Strategy for Combating AD will be adopted and published in Croatian and English, to make it available for other countries in the world, especially those from the European Union.

P20.4. With public campaign to National Plan

LUKIC ZLOBEC Stefania

Up to 2010, the field of dementia in Slovenia was not systematically organized and the plan was not even discussed. In 2010, intensive efforts to implement the national plan for dementia were launched. I’ve became involved in the subject when my husband fell ill with Alzheimer dementia before 50 years of age, and with the two specialists who were treating him we discussed the necessity to implement the national plan on dementia. We gained support from the Parliamentary Health Board. As a result, we got support also from the Minister of Health and he issued a decree in May of 2010 to establish a working group for the preparation of the national plan on dementia.

What we learned from the Alzheimer Europe lunch debates in Brussels was that a wide public campaign is necessary to prepare the national plan. Spominčica in all this years through all its activities (very successful and nationwide Alzheimer Cafés, support groups and education programs for corers, Spominčica magazine …) promoted the necessity and urgency of the national plan. We succeeded to raise awareness about dementia and de-stigmatization of the disease in general. All our activities are always accompanied by wide media publicity, especially on radio, TV, printed media and internet. In this way, we opened the space and made dementia more recognizable and the society more friendly to dementia.

The preparation of the plan is in its final phase. In the working group for the national plan on dementia of 10 people there are different professionals (psychiatrists, neurologists, GPs and representatives of Spominčica and representatives of the Government).

All our 8 MEPs signed the Pledge that dementia becomes the priority of public health and they support our endeavors fort the national plan. We also gained support from the President of the Republic of Slovenia, Borut Pahor.

The necessity of having the national plan on dementia is our priority and we hope that we are now really near to it.

P20.5. National opinion survey on dementia: knowledge, attitudes and beliefs

MACHADO DOS SANTOS Pedro, PAUL Constança, NEVES Sofia, PORTUGAL Cristina, CARVALHO Alvaro

Objective: This  national  survey  main  goal  was  to  characterise  and  analyse  beliefs, knowledge, and attitudes of the Portuguese population regarding dementia in a comparative perspective (national and international level). Moreover the study aimed at identifying and comparing the views of general public, health professionals and parliament members, to inform and support mental health research and policy making.

Method: An advisory group including academics and representatives of the Mental Health National Program was set up to draft the survey questions, based on previous researches. The survey was uploaded online on the Directorate-General of Health website and a link sent to related institutions and shared on social networks. The survey was cascaded by inviting recipients to further share it. Preliminary data collected between 10 December 2014 and 20 January 2015 were analysed, from a national sample of adults (age 18 and over).

Results: 951 responses were included. 71.9% of respondents were aged under 45, 75.5% were female, and 34.0% were health professionals. Nearly half of the respondents (44.9%) knew someone with dementia due to professional reasons, and 36.1% have or had relatives with dementia. Among a list of eight diseases dementia was the third biggest health fear after cancer and stroke. Around a quarter of the subjects (26.1%) said dementia was the condition they feared the most. Almost one third of the sample (32.7%) believes there is currently a reliable diagnostic test to determine early stages of dementia. Results also reveal that over

92.7% of respondents in Portugal say that if they were exhibiting confusion and memory loss, they would want to see a doctor to obtain a diagnosis. Over 98.2% would want the same if a family member were exhibiting those symptoms. Nevertheless, nearly a quarter of the respondents (26.9%) considered that most people who live in their community believes that people with dementia must leave/stop to attend ceremonies and social parties. According to the respondents point of view, only 7.3% of people in their community  consider that dementia is a fatal disease, but about half (52.6%) believe that it causes much suffering to the sick person, 62.0% that it is a condition that causes greater social stigma in comparison to other diseases, and 92.8% that it is a disease that brings a great burden to the family.

Conclusions: The survey results will provide key information for evidence-based decision- making and contribute to a more efficient allocation of available health resources for dementia care.  While  building  up  on  international  learnings,  the  availability  of  national  data  will contribute to refine key areas for intervention and to establish priority actions in dementia care policy, including awareness-raising, education, prevention and treatment.

 

 
 

Last Updated: Tuesday 29 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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