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
Many EHPADs have already created dedicated units. The Plan provides for the creation of specific units to be generalised, distinguishing between two types of units according to the degree of behavioural problem of the people concerned.
The objective is to achieve 30,000 places in EHPADs with specific projects, adapted to the seriousness of the behavioural problems.
12,000 places to be created,
18,000 places to be reinforced.
These units will be reinforced in terms of staffing, with a high level of supervision, the intervention of professionals specially trained in the disease, and training for all staff in these establishments in the specific nature of the care required. They will also be adapted with regard to their architecture and internal layout.
As Alzheimer’s disease evolves, psychological and behavioural symptoms or behavioural problems often appear. These may include apathy or aggressiveness, wandering behaviour or agitation. These are very important issues in Alzheimer’s disease, as they have a considerable impact on patients and on patients’ families. They also constitute the main difficulty encountered by EHPAD professionals.
For example, 80% of residents with Alzheimer’s or a related disease present behavioural problems at some stage in the evolution of the disease. Of these 80%, 25% have moderate behavioural problems (measured on an internationally validated scale) and 10% have major problems (aggressiveness etc.). These problems must be measured more effectively and the diagnosis of the disease must be made clearly for EHPAD residents affected by it.
(1) Specially adapted treatment and activity units will be created to offer residents with productive behavioural problems, social and therapeutic activities during the day in a specially adapted living area in a calm environment with space to walk around.
They will be led by specially trained professionals, which requires that the professional skills made available to patients be widened. This will include creating the role of "gerontological assistant", a new skills profile described in measure 20.
It will also be necessary to reinforce teams with new skills in this area, such as psychomotor and occupational therapy. Speech therapists may also intervene on the basis of a medical prescription.
Finally, psychiatrists will be involved with the operation of these units, either working with the psychiatric team or in a partnership with independent psychiatrists. Daily care for the disease regularly requires recourse to psychiatrists: EHPAD staff acknowledge that they are sometimes helpless to deal with certain facets of the disease.
The creation of these specific units will require extra staffing, enabling the establishments to be more medicalised. Pricing for these units must also be re-evaluated, in order to incorporate these professionals, such as gerontological assistants, psychomotor therapists and occupational therapists, into the establishments’ teams. In addition, all the institutions’ staff must be trained to deal with the specific nature of care for Alzheimer’s patients.
The presence of a living unit of this type within an EHPAD, occupying people with behavioural problems during the day, will enable other residents to benefit from more traditional social activities, offering all residents times apart and times together without having to move residents experiencing behavioural problems at a particular point in the history of their disease from one bedroom to another.
These activities and care are very important because they can reduce behavioural problems by 20% and cut down on use of sedative psychotropic drugs and restraint. They may involve structured activities (physical activity, sensory activity, nutritional aspects) designed specifically to improve behavioural problems. Similarly, spatial orientation rehabilitation, cognitive validation groups, behavioural approaches and psychosocial treatment in general can improve quality of life and reduce the incidence of behavioural problems, even if such interventions still need to be better evaluated.
2) For patients with very considerable behavioural problems, reinforced structures will be developed in the form of small units able to house about a dozen people day and night, providing both accommodation and activities and satisfying all the criteria for a suitable care and activity unit.
3) These specialist units must also be adapted in their layout and even architecture to host Alzheimer’s patients.
The Plan thus provides for the launch of a major investment programme, subsidised through modernisation credits from the CNSA, in order to avoid the development work undertaken for specific Alzheimer’s units weighing too heavily on the price for accommodation paid by patients and their families.
Initially, the modernisation plan will enable 15,000 places to be adapted or constructed in 2008.
This work will be carried out according to specifications established by the Ministry for Social Affairs, the ANESM, the HAS and the CNSA together with foundations such as the Fondation Médéric Alzheimer and professionals who have worked on these architectural issues.
Adherence to these specifications will be a decisive factor in the CNSA’s allocation of support, and expertise in this area must be continuously available to establishments.
An "Alzheimer’s architecture prize" will be created to reward the most innovative EHPADs. The prize will emphasise the advantages of thinking about architectural quality in caring for Alzheimer’s patients.
Lead supervision : the Directorate General for Social Action (Direction générale de l’action sociale, DGAS)
Supervision : The national Independent-Living Support Fund (Caisse nationale de solidarité pour l’autonomie des personnes âgées et des personnes handicapées, CNSA)
Partners : the National Social and Medico-Social Evaluation Agency (Agence nationale de l’évaluation sociale et médico-sociale, ANESM), Toulouse University, the Foundation for Scientific Cooperation (Fondation de Coopération Scientifique, FCS), the Directorate General for Health (Direction générale de la santé, DGS), the Hospitalisation And Care Organisation Department (Direction de l’hospitalisation et de l’organisation des soins, DHOS), the National Health Authority (Haute Autorité de Santé, HAS), France Alzheimer, association of French hospitals (Fédération hospitalière de France, FHF), Médéric Alzheimer
2008: re-evaluating pricing to enable new professionals to be incorporated
2008: validating the definition of specific care and activity units and reinforced accommodation units for patients with behavioural problems (consensus group)
2008: refining the tool for finding out département needs: Regional Health and Social Affairs Department (Direction régionale des affaires sanitaires et sociales, DRASS) and CNSA
2008-2012: recruiting professionals to put these special units together
2008-2012: orienting the CNSA’s investment support programmes towards the architectural adaptation of these units
Adapting units and creating adapted units by reinforcing personnel
The additional funding for the 12,000 new places (staff reinforcement) amounts to €180 million throughout the term of the plan.
The funding for adapting the 18,000 existing places (staff reinforcement) amounts to€378 million throughout the term of the plan.
Work on the layout of units
€180 million in CNSA investment credits in 2008.
This objective will be pursued. Part of the CNSA funding allocated to investment in 2009-2012 will be devoted to supporting investment in these specific units dedicated to caring for Alzheimer’s patients.
Production of specifications for both types of units
Creation of an architecture prize
Results indicators Number of places created in specific care and activity units Number of places created in reinforced Alzheimer’s units Number of units developed according to specifications Measurement of behavioural problems.