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

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

Main challenges of the plan

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

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

Research : knowledge for action

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

Improving quality of life for patients and carers

Improving quality of life for patients and carers Improving 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

Improving quality of life for patients and carers Strengthening coordination between all actors Labelling integrated access points (« MAIA - maisons pour lautonomie et lintégration des malades dAlzheimer » - houses for autonomy and integration of people with Alzheimers disease) 17 experiments selected - jan 2009 « club of volunteers » 1000 coordinators (case managers) over the whole territory

Improving quality of life for patients and carers Enabling 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

Improving quality of life for patients and carers Improving 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 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 : 18% of Alzheimer patients prescribed with antipsychotics

Improving quality of life for patients and carers Improving residential care Creating specific units for patients with behavioural problems within nursing homes Day units - day/night units - new norm on march new places Reinforcing 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

Improving quality of life for patients and carers Developping 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

Mobilising around a key social issue

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

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

Mobilising around a key social issue Making dementia a European priority Making the fight against Alzheimers 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 october 2008

Mobilising around a key social issue Additional measures Opinion and knowledge survey 2008 and 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