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.

Context

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.

Measure

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:

• create a clearly identified area for welcoming and listening to Alzheimer’s patients and their families and evaluating their situation in complex cases from the viewpoint of a variety of disciplines;
• share resources in terms of recruiting social, medical, paramedical and administrative staff, acquiring and sharing logistical or technical resources, and acquiring and developing shared services: services at home such as meal deliveries, transport etc.;
• draft new care strategies involving different sectors and bringing together complementary skills;
• take an interdisciplinary approach to the patient, setting up continuous care adapted to his or her needs; the single medico-social contact and the case manager have their offices in the coordination centre;
• define training actions;
• define actions to support carers;
• facilitate action to improve the evaluation of activities and of quality of service (circulating procedures, references and recommendations for good practice);
• evaluate practice;
• set up a system of single contacts for everyone suffering from the disease and of single coordinators for complex cases.

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.