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
The aim is to offer a diverse range of respite facilities in each area corresponding to the needs of patients and carers, and to guarantee their accessibility.
In order to ensure a free choice for as long as possible between care at home and institutionalisation, it is essential for carers to have access to flexible solutions that suit their needs for periods of respite which are also an opportunity for treatment and evaluation for the patient and the people involved. In this way we can prevent the crisis situations that often result in permanent institutionalisation. The objective is thus threefold: to provide high-quality care for the patient, while guaranteeing a period of respite for the carer suited to his or her needs and enabling access to these structures with appropriate financial measures.
In order to support carers better and widen the diversity of options available to both patients and their families, the public authorities have developed a range of respite structures that are now receiving sustained attention.
Beyond the objective of creating new places, which remains central, four requirements emerge.
We need to know more about the factors that make the installation and use of day care facilities a success or a failure. A study will be launched by the National solidarity funds for autonomy CNSA, which will explain the differences between structures and give the impact of new measures such as reimbursing transport costs. If the latter initiative proves flawed, it will be reformed in 2009 to make sure families’ needs are fully met. The study will also be a chance to check that good use is being made of temporary accommodation, and otherwise to recommend ways of guaranteeing the availability of places.
We need to offer carers new solutions that are more flexible and better suited to their needs. In a given area (covered by a "single point of contact"), a variety of structures corresponding to carers’ needs must be available. To achieve this, several different innovative respite arrangements will be tested as part of the experimentation in progress, located in areas with varied profiles: day accommodation, night accommodation, mobile day and night care, care at home, psychological support and various types of temporary accommodation etc. The use of these facilities will be evaluated, as will their medico-economic benefit, and the obstacles, including legal barriers, in the way of their implementation. After these trials, the innovative respite packages will be developed so that each area can benefit from a range of respite structures corresponding to the needs of patients and carers.
In parallel with these experiments, the National Social and Medico-Social Evaluation Agency (Agence nationale de l’évaluation sociale et médico-sociale, ANESM), in partnership with the National Health Authority (Haute Autorité de Santé, HAS), will establish specifications for the various reception and accommodation facilities that emphasise the quality of care and the intervention of professionals specifically trained to deal with cognitive disabilities, in order to guarantee high-quality care and a real benefit for the patient. No distinction should be made between respite structures for the carer and temporary care structures for the patient: all respite structures should have a strong therapeutic dimension, a real care project for patients.
This guide will be drafted in partnership with associations and foundations.
Lead supervision : The national Independent-Living Support Fund(Caisse nationale de solidarité pour l’autonomie des personnes âgées et des personnes handicapées, CNSA) Supervision : the Directorate General for Social Action (Direction générale de l’action sociale, DGAS), the National Social and Medico-Social Evaluation Agency (Agence nationale de l’évaluation sociale et médico-sociale, ANESM) Partners : the Directorate General for Health (Direction générale de la santé, DGS), Médéric Alzheimer, France Alzheimer, Lions club
2008: study of day care by the CNSA (part of its 2008 study programme) 2008: widening the range of care solutions, establishing a new typology of structures in which trials can be carried out and drafting specifications (ANESM, HAS) for each one.
2008: experimenting with different types of temporary reception and accommodation facilities, to be developed across the country from 2009.
The trials represent a cost of €2.5 million per year (duration: 2 years), corresponding to the launch of ten trials of different packages in areas with different profiles.
The additional funding for these day care centres added to the new places already planned, and the funding for transport, represents a total of €169.5 million over the period of the plan.
The availability in 2009 of a study of the requirements expressed, the relevance of the flexible and innovative solutions proposed and the satisfaction of users according to several archetypal district profiles
Establishment of specifications for the therapeutic dimension of day care
Adherence to the specifications by all day care units by 2012
Number of platforms created/number of Alzheimer’s patients registered
Availability in 2012 of a range of respite services in each district