Context and issues

A new measure for the Alzheimer’s plan : when setting the plan’s governance early 2008 and defining proper assessment for each measure of the plan, it appeared necessary to study opinion and attitude about the disease and the impact of the plan among patients and their carers.

The first results of measure 37, “studying disease knowledge and attitudes”, helped to define precisely the measure.

Firstly, INPES (Institut national de prévention et d’éducation pour la santé, the National Institute for Prevention and Health Education) reviewed literature on social representation of Alzheimer’s disease. This study reviewed 15 years and analysed scientific publications from France and the whole world. It confirmed that perception of Alzheimer’s disease throughout the world is extremely negative, with slight differences between general public and those more concerned with the disease.

In order to review the public‘s awareness, knowledge and attitudes about Alzheimer’s disease, the INPES asked IPSOS to carry a qualitative survey on a hundred persons from public, family carers and health professionals. Carried during summer 2008, this study showed that fear and shame are attached to Alzheimer’s disease which is considered as a true disaster. It also revealed very fragmented knowledge on Alzheimer’s disease from those who were asked, including family carers and health professionals. On the other hand, expectations are great among general population concerning research, institutions and training.

Measure 37 also plans to incorporate a module of questions on Alzheimer’s disease into the INPES health survey addressed to general practitioners.

Objective

Adding to measure 37, « studying knowledge and attitudes »,

• Explore social representations of Alzheimer’s disease among public, patients, family carers, general practitioners, health and care professionals in general) ;
• Evaluate opinion and expectations on Alzheimer’s plan.

Measure

Series of quantitative studies, on larger samples than those from the qualitative study in measure 37 will be carried on different populations :

• General public : 2 000 persons were polled by phone on october 2008 on their attitudes about Alzheimer’s disease, their knowledge and their expectations.
• General practitioners : within the INPES health survey (Baromètre santé), 1000 health professionals will be polled during the last three months of 2008 on their relations with Alzheimer’s patients ;
• Family carers and patients : first, a qualitative survey will be carried at the end of 2008 on patients in order to complete the qualitative study on public and carers ; then, 300 patients and 300 family members will be polled at home at the beginning of 2009 in order to explore their attitude about Alzheimer’s disease and care and to ask about their expectation on the Alzheimer’s plan.
• Health and care professionals : between april and june 2009, 300 home carers will be questioned on their relations with Alzheimer’s patients.

These studies will be carried again in 2011 in order to assess the evolution of their attitudes toward Alzheimer’s disease and to estimate their knowledge and opinion on some measures of the Alzheimer’s plan.