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
To improve conditions around the communication of the diagnosis and the provision of support at all stages of the disease.
An Alzheimer’s diagnosis is established on the basis of an evaluation of cognitive, memory, executive and instrumental functions, and is usually made at a specialized consultation with a neurologist or a memory centre at the request of the patient’s primary-care doctor.
For this slowly evolving disease, which is so harrowing and disruptive for the patient and his or her family, giving the diagnosis may require a repeated and concerted approach involving a variety of professionals based on good practice.
Given the specific characteristics of this disease, which call for long-term social care above and beyond the medical treatment itself, the diagnosis must be given as part of a package of information for the patient and the family, not only about the disease itself but also about how the treatment plan will work and the possibility of social support. This information about the disease involves mobilising all healthcare professionals and particularly the future case coordinators.
The process includes a first stage after giving the diagnosis which should take place ,during a specialist memory consultation, whether this is with an independent neurologist or in a public or private hospital, , and a second stage of confirmation of the diagnosis, explanation and support during consultations with the primary-care doctor.
It is therefore important to define good practice for the announcement, along the lines of the approach provided for, in the implementation of the national cancer plan, covering all the situations likely to be encountered and the role of each partner (carer, primary-care doctor, independent neurologist, hospital team, patients’ associations, medico-social partners etc.) involved with the patient.
The PLASA1 research programme is due to publish its conclusions in March 2008. Based on these data and previous studies, the HAS will draw up recommendations for how Alzheimer’s follow-up should be provided and the role of each actor.
Description of the measure
1 The PLASA study, "Plan de Soin et d’Aide spécifique à la maladie d’Alzheimer" (care and support plan specific to Alzheimer’s disease, a hospital clinical research programme or Programme hospitalier de recherche clinique, PHRC, 2002 and 2006) tests the effectiveness of a support and care plan in dealing with loss of autonomy, the carer’s burden and recourse to treatment. This multicentric randomised study followed 1121 patients suffering from Alzheimer’s disease for four years. Half the randomised patients were followed up according to the recommendations of the Treatment Plan, and the other half according to the usual practice of the centres.
Lead supervision : the Directorate General for Health (Direction générale de la santé, DGS)
Supervision : the National Health Authority (Haute Autorité de Santé, HAS)
Partners : Department of Social Security (Direction de la sécurité sociale, DSS), the french Public Health Society (société française de santé publique), Toulouse University, the National Institute for Prevention and Health Education (Institut national de prévention et d’éducation pour la santé, INPES), the Hospitalisation And Care Organisation Department (Direction de l’hospitalisation et de l’organisation des soins, DHOS), France Alzheimer, The national Independent-Living Support Fund (Caisse nationale de solidarité pour l’autonomie des personnes âgées et des personnes handicapées, CNSA), doctors’ unions, learned societies, The French Pharmaceutical Companies Association (les entreprises du médicament, LEEM)
Drafting the arrangements
Preparatory work: €0.1 million for the conference
Source: state budget - Ministry of Health
Implementation of the arrangements
Reinforcement of memory units. Adapting pricing for independent professionals.
Arrangements in place in over 50% of specialist units by 2010 Reduction of the caregiver’s burden (ZARIT) at the beginning of the disease
Number of trial doctors
Number of patients concerned External evaluation based on indicators to be defined (satisfaction, cost etc.)