Developing and diversifying respite structures
Consolidating rights and training for carers
Improving health monitoring for family carers
Quality labelling throughout the country for "single points of contact", the "Maisons pour l’Autonomie et l’Intégration des malades Alzheimer" (MAIA)
Establishing "coordinators" throughout the country
Reinforcing support at home, advocating services by trained staff
Improving support at home using new technologies
Preparing and implementing a system for giving the diagnosis and providing counselling
Experimenting new payment terms for health professionals
Creating an Alzheimer’s disease information card for each patient
Creating memory units in areas that are not covered
Creating "memory resource and research centres" in areas that are not covered
Reinforcing the very active memory units
Monitoring drug-related iatrogenic accidents
Improving correct use of drugs
Creating specific units for patients suffering from behavioural problems within EHPADs
Creating specialized units within health care rehabilitation and follow-up (SSR) departments for Alzheimer’s patients
Accommodation for young patients
Identifying a national reference centre for young Alzheimer’s patients
A specific career and skills development plan for Alzheimer’s disease
Creating a foundation for scientific cooperation to stimulate and coordinate scientific research
Developing clinical research of Alzheimer’s disease and improving evaluation of non-drug therapies
Doctoral and post-doctoral grants
New assistant surgeon and hospital teaching assistant positions
Research in human and social sciences
Support for research groups working on innovative approaches
Support for methodological research groups in human and social sciences
Creation of a body of research in automatic image processing
Studying large patient populations (cohorts) with long-term monitoring
Exploiting the genome sequencing of the microcebe
Training in clinical epidemiology
Developing links between public research and industry
Setting up epidemiological surveillance and follow up
Setting up a telephone helpline and a website for information and local advice
Holding regional conferences to support the implementation of the plan
Studying disease knowledge and attitudes
Creating a space for ethical thought about Alzheimer’s disease
Launching a discussion about the legal status of Alzheimer’s patients in institutions
Organising regular meetings focusing on the autonomy of people suffering from Alzheimer’s disease
Informing patients and their families about trials implemented in France
Making the fight against Alzheimer’s disease a priority for the European Union during the French presidency
Publicizing and promoting research across Europe
Holding a European conference in autumn 2008
Studying opinion and attitude about Alzheimer’s disease and the impact of the plan among patients and carers
Better coordination between care, information and support structures should enable a personalised care pathway to be defined for each Alzheimer patient corresponding to the situation of each family. We need to offer a graduated response to suit each situation.
Several measures have been put in place in France over the last twenty years to try to respond to the lack of coordination, including the Local Centres for Information and Coordination (Centres Locaux d’Information et de Coordination, CLIC) and the gerontology networks. They have made a number of notable advances, but their areas of intervention remain different - mainly social for the former, and health-care related for the latter. It is important to end the confusion of families who do not know whom to contact, and who are lost among the many poorly-connected, separate sources of help.
A coordination centre bringing together the health sector and the medico-social sector will be created (on the basis of existing facilities, without superimposing a new structure): it will constitute a "single desk", a "single point of contact" for users.
Bringing together existing provision will make it possible to:
These "Centres for the Autonomy and Integration of Alzheimer’s Patients" will represent a real single point of contact, a place for directing care, with the advice of doctors and social workers, to construct a personalised care pathway with the help of the coordinator; they will be a place where a variety of professionals are continuously available, enabling multidisciplinary care at a single location in contact with the coordination network; they will be a source of information for families, who too often do not know about temporary accommodation solutions. Carers will also be supported and assisted in these centres, with at least one annual appointment to assess their needs and their state of health.
Once the diagnosis has been given, these "MAIAs" and the coordinators can be contacted by the patient and his or her family using a single national telephone number that connects to the nearest facility. This single number will ensure a simple link from patients and their families to the professionals, ending the confusion experienced by families when faced with the complexity of the system and their feeling of isolation in crisis situations, thus helping to facilitate care at home.
In order to structure these centres in départements (administrative districts) where the current situation varies widely, trials will be launched. These experiments may be based on a CLIC, a gerontology network, an experiment in coordination, treatment and service platforms operated by independent nurses or a case management structure. The coordination of the existing responses is essential: the CLICs, APA teams, social services provided by local social action centres (Centres communaux d’action sociale, CCAS) or the département, nursing services at home (Services de soins infirmiers à domicile, SSIAD) or flexible care and support services at home (Service polyvalent d’aide et de soins à domicile, SPASAD), gerontological networks and treatment and service platforms operated by independent nurses. The role should also include disseminating information for families provided by the CCAS, pension funds, town halls, councils, mutual health insurers, home care services and family information points.
Upon request these trials may be based on the Département Centre for Disabled People (Maison départementale des personnes handicapées, MDPH) to test the viability of creating local autonomy centres. Indeed some MDPHs have already begun moving closer to their local CLICs, particularly with regard to shared evaluation teams. Some département councils may choose to include the development of joint facilities for disabled people and dependent elderly people in their service quality support agreements with the CNSA.
These trials will be supported by project teams supplying supervision, evaluation and methodological support. They will be evaluated regularly.
Following the trials, in districts defined in each département by the local council and the Regional Health Agency (Agence régionale de la santé et de la solidarité, ARS), these single coordination centres will be structured according to the models established by the trials. The départements will be responsible for structuring these centres, with the support of the ARS, governed by a framework agreement. The centres will have a "Maisons pour l’Autonomie et l’Intégration des malades Alzheimer" (MAIA) quality label. If they are brought together with the MDPHs, they will become "Maisons départementales pour l’autonomie" (département centres for autonomy).
A team from the CNSA, liaising with the DGAS and the DGS, will be available to provide support in this structuring process; it will also be responsible for making sure the centres are set up uniformly across the whole country. An evaluation will be carried out by the CNSA in 2012 to ensure that these single centres of contact have been set up successfully according to the initial specifications.
Lead supervision : Ministry of Social Affairs
Supervision : The national Independent-Living Support Fund(Caisse nationale de solidarité pour l’autonomie des personnes âgées et des personnes handicapées, CNSA), steering committee for MAIA
Partners : the Hospitalisation And Care Organisation Department (Direction de l’hospitalisation et de l’organisation des soins, DHOS), the Directorate General for Social Action (Direction générale de l’action sociale, DGAS), The national Independent-Living Support Fund (Caisse nationale de solidarité pour l’autonomie des personnes âgées et des personnes handicapées, CNSA), the Directorate General for Health (Direction générale de la santé, DGS), the assembly of French départements (Assemblée des départements de France, ADF), the National Employees’ Health Insurance Fund (Caisse nationale d’assurance maladie des travailleurs salariés, CNAMTS), France Alzheimer, doctors’ unions, learned societies, Médéric Alzheimer
Adaptation of the Alzheimer’s telephone number for the coordination system: 2009 Setting up coordination centres throughout the country: 2010-2012
Project team responsible for supervision and evaluation: €0.7 million per year Funding for local trials: €4.6 million per year (state and CNSA)
Département council/CNSA support agreements will include the creation of the coordination centre. A team will be put together by the CNSA, the DGS and the DGAS to monitor their establishment in all départements, supporting the départements and ensuring equity across the country.
Evaluation of the establishment of the centres: CNSA, €1.4 million
Number of trials set up
Number of objectives achieved at each site (single point of contact, single contact person, single evaluation tool, support and treatment plan, shared information point)
Modification of professional practice
Degree of coordination at a site
Provision of telephone guidance on the Alzheimer’s number