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The French Plan on Alzheimer’s disease and related disorders 2008-2012

The French Plan on Alzheimer’s disease and related disorders 2008-2012 24th conference of Alzheimer’s Disease International Dementia, global epidemic, national action Singapore, 26 march 2009 Florence Lustman Inspecteur général des finances Steering committee for the Alzheimer plan.

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The French Plan on Alzheimer’s disease and related disorders 2008-2012

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  1. The French Plan on Alzheimer’s disease and related disorders 2008-2012 24th conference of Alzheimer’s Disease International Dementia, global epidemic, national action Singapore, 26 march 2009 Florence Lustman Inspecteur général des finances Steering committee for the Alzheimer plan

  2. The French Alzheimer Plan • Main challenges of the plan • Knowledge for action • Improving quality of life for patients and carers • Mobilising around a key social issue

  3. Main challenges of the plan

  4. Two previous plans (2001-2008) ALD 15 – list of long-term diseases 134 Memory Centres, 22 Reference and Research Memory Centres Places in Day Centres and Temporary Hospitalisation No major specific effort on research

  5. The main challenges of the plan • A commission chaired by Pr Ménard • 10 members, 8 working groups, 100 people, 3 months • Report to the President on 8 november 2007 • A financial effort on 5 years • 200 M€ for research • 200 M€ for medical care • 1,2 billion euros for medico-social support • Three main themes • Developing our understanding of the disease • Improving the quality of life for patients and carers • Mobilising society for the fight against dementia by developing a voluntary approach and synergisms • A new governance based on transparency • Direct reporting to the President of the French Republic every 6 months • Coordination and assessment • Steering committee every month • Supervisory committee every 4 month

  6. Research : knowledge for action

  7. Knowledge for action • Objective : to discover or validate a diagnosis or treatment within 5 years • A foundation for scientific cooperation set on 29 june 2008 • A national network of excellence • Attract the best French and foreign researchers and give support to the best teams • Develop partnerships with industry, including drug companies • Develop relationships between all kinds of research, public and private, fundamental, clinical, biological, social science

  8. Improving quality of life for patients and carers

  9. Improving quality of life for patients and carersImproving support and respite for carers • Developing and diversifying respite care services • Creating new places • Evaluating existing facilities • Experimenting innovative respite solutions • call for projects on jan 09 : multiservices platforms • Drafting specifications for a therapeutic dimension in all structures • Drafting a guide for respite centers • Strengthening caregivers rights and education • 2 days’ training a year for carers • Support in returning to work • Improving health monitoring for family caregivers

  10. Improving quality of life for patients and carersStrengthening coordination between all actors • Labelling integrated access points (« MAIA - maisons pour l’autonomie et l’intégration des malades d’Alzheimer » - houses for autonomy and integration of people with Alzheimer’s disease) • 17 experiments selected - jan 2009 • « club of volunteers » • 1000 “coordinators” (case managers) over the whole territory

  11. Improving quality of life for patients and carersEnabling patients and their families to choose support at home • Reinforcing home support, favouring home intervention of specialised professionals • call for projects : 40 teams - march 09 • in 2012, 500 specialist teams in home nursing services • Improving home-support using new technologies • national and European calls for project targetting home automation and ICT

  12. Improving quality of life for patients and carersImproving access to diagnosis and ensuring a continuous chain of care • Developing and implementing a framework for diagnosis announcement and follow-up • Experimenting new payment terms for health professionals • Alzheimer information card for patients in case of emergency situations • 10 000 cards distributed in 2008 by France Alzheimer on physician request • New local memory centers in zones without any • + 21/24 in 2008, + 12 in 2009 • New research and resources memory centers in zones without any • 3 in Auvergne, Corse and Limousin • Strengthening the very active memory centers • Monitoring adverse drug reactions • Improving correct use of drug • Study 10-2008 : 18% of Alzheimer patients prescribed with antipsychotics

  13. Improving quality of life for patients and carersImproving residential care • Creating specific units for patients with behavioural problems within nursing homes • Day units - day/night units - new norm on march 09 • 12.000 new places • Reinforcing 18.000 places • 180 M€ investment credits in 2009 • Creating specialized cognitive behavioral units within rehabilitation services • 120 structures (21 identified in 2008) • Setting up residential services for young patients • Creating a national reference centre for young patients • Lille-Rouen-Paris selected in feb 2009

  14. Improving quality of life for patients and carersDevelopping skill sets and specific training for all care professionals • New competences : case-managers and « gerontology assistants » • Training for ergotherapeuts and psychomotricians • Training for all staffs

  15. Mobilising around a key social issue

  16. Mobilising around a key social issue Providing information and increasing awareness amongst the general public • Setting up a telephone helpline and local web sites for local information and orientation • Holding regional conferences to support the implementation of the plan • Studying disease knowledge and attitudes • A first study in fev 2009

  17. Mobilising around a key social issue Promoting an ethical debate and approach • Creating a national center for ethics on dementia • Reims selected in feb 2009 • Adapting the legal status of those with dementia • Organizing conferences about the autonomy of patients • Patient representation • GPS bracelets • Informing patients and families about trials implemented in France • Access through Internet to the therapeutic and diagnosis research protocols performed or scheduled in France

  18. Mobilising around a key social issue Making dementia a European priority • Making the fight against Alzheimer’s disease a priority for the European Union • Conclusions adopted at the Health council on 16 december 2008 • Publicizing and promoting research at the European level • Conclusions adopted at the competitivity council on 26 september and 2 december 2008 • Joint programming • European conference on 30-31 october 2008

  19. Mobilising around a key social issueAdditional measures • Opinion and knowledge survey • 2008 and 2011 • 2 000 participants, after a qualitative study (130 participants) • A medico-economic study • Costs at home and in institutions, / disease stage • From the viewpoint of families and community • Website www.plan-alzheimer.gouv.fr

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