Measure n°37 - Plan Alzheimer 2008

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Measures

01

Developing and diversifying respite structures
02

Consolidating rights and training for carers
03

Improving health monitoring for family carers
04

Quality labelling throughout the country for "single points of contact", the "Maisons pour l’Autonomie et l’Intégration des malades Alzheimer" (MAIA)
05

Establishing "coordinators" throughout the country
06

Reinforcing support at home, advocating services by trained staff
07

Improving support at home using new technologies
08

Preparing and implementing a system for giving the diagnosis and providing counselling
09

Experimenting new payment terms for health professionals
10

Creating an Alzheimer’s disease information card for each patient
11

Creating memory units in areas that are not covered
12

Creating "memory resource and research centres" in areas that are not covered
13

Reinforcing the very active memory units
14

Monitoring drug-related iatrogenic accidents
15

Improving correct use of drugs
16

Creating specific units for patients suffering from behavioural problems within EHPADs
17

Creating specialized units within health care rehabilitation and follow-up (SSR) departments for Alzheimer’s patients
18

Accommodation for young patients
19

Identifying a national reference centre for young Alzheimer’s patients
20

A specific career and skills development plan for Alzheimer’s disease
21

Creating a foundation for scientific cooperation to stimulate and coordinate scientific research
22

Developing clinical research of Alzheimer’s disease and improving evaluation of non-drug therapies
23

Doctoral and post-doctoral grants
24

New assistant surgeon and hospital teaching assistant positions
25

Research in human and social sciences
26

Support for research groups working on innovative approaches
27

Support for methodological research groups in human and social sciences
28

Creation of a body of research in automatic image processing
29

Studying large patient populations (cohorts) with long-term monitoring
30

High-speed genotyping
31

Exploiting the genome sequencing of the microcebe
32

Training in clinical epidemiology
33

Developing links between public research and industry
34

Setting up epidemiological surveillance and follow up
35

Setting up a telephone helpline and a website for information and local advice
36

Holding regional conferences to support the implementation of the plan
37

Studying disease knowledge and attitudes
38

Creating a space for ethical thought about Alzheimer’s disease
39

Launching a discussion about the legal status of Alzheimer’s patients in institutions
40

Organising regular meetings focusing on the autonomy of people suffering from Alzheimer’s disease
41

Informing patients and their families about trials implemented in France
42

Making the fight against Alzheimer’s disease a priority for the European Union during the French presidency
43

Publicizing and promoting research across Europe
44

Holding a European conference in autumn 2008
45

Studying opinion and attitude about Alzheimer’s disease and the impact of the plan among patients and carers

Accueil > 44 measures > Measure n°37

Measure n°37Version française

Studying disease knowledge and attitudes

To raise the public’s awareness of Alzheimer’s disease, the patients’ cause and that of their families, in collaboration with the patients’ associations.

Context and issues

Alzheimer’s disease creates fear, and the public’s view of the disease and the people suffering from it isolates patients and their families even more. The public’s awareness of the patients’ cause and that of their families must be reinforced, in collaboration with the patients’ and health professionals’ associations, which are already working hard in this direction.
Social solidarity must be developed further by publicising the efforts of those who assist and support patients: carers, health and medico-social professionals and patients’ associations.

Measure

Carrying out a qualitative survey to understand non-specialists’ degree of knowledge and the attitudes of the general public and of health professionals to the disease.
Measuring and monitoring the development of the population’s attitudes and knowledge about Alzheimer’s disease by representative surveys (including questions in the INPES health survey, the Baromètre santé).

Actors

Lead supervision : the National Institute for Prevention and Health Education (Institut national de prévention et d’éducation pour la santé, INPES)
Supervision : IPSOS santé
Partners : the Directorate General for Health (Direction générale de la santé, DGS), France Alzheimer, Médéric Alzheimer

Schedule

Qualitative study: preparation
- 1st quarter 2008, fieldwork
- 2nd quarter 2008. Population surveyed: general public, not family carers, first-line health professionals. Use of the INPES framework contract for studies.
Construction of a module of questions to monitor the public’s knowledge and attitudes about Alzheimer’s diseases, the patients suffering from it and the best ways of dealing with it (need for a diagnosis as early as possible) based on the results of the qualitative study. Pilot study to test the module: 2nd half of 2008
Incorporation of the module into the 2009-2010 INPES health survey.

Funding

Funding amount: €0.1 million (€70,000 for the qualitative study, €30,000 for the "Alzheimer’s" module test) Sources of funding: State - Ministry of Health - INPES

Evaluation

Publicising the results of the qualitative study (press coverage, tie-in with possible regional conferences)
Improvement in public knowledge and acceptance of Alzheimer’s disease monitored by indicators taken from surveys of the general population
Increase in early diagnosis/decrease in late diagnosis (indicator to be prepared)

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