Alzheimer Europe members’ survey on disclosure of diagnosis to the person with dementia - Introduction

The survey OPDAL was designed to shed light on the circumstances in which presently the diagnosis is disclosed to the patient and/or to the family and to have a clearer idea about the information provided by health professionals as well as the information carers would like to receive.

Funding - Duration

This survey involved 323 active family carers from 11 European countries mainly recruited by Alzheimer Europe and its national members. This survey was funded by an unrestricted grant from Janssen-Cilag.

The field process started March 5 and finalized August 30, 2001.

Participants

323 Alzheimer family carers from 11 European countries have been involved in this survey, mainly recruited through national Alzheimer family Associations members of Alzheimer Europe.

The characteristics of these 323 carers broadly reflected those seen in clinical practice: mainly spouses, predominently women, aged 59.4 years old (mean age), most acting as principal caregiver and caring for relatives with a mean age of 69.9 years at the time of the diagnosis.

Interviewees were active family carers of a person suffering Alzheimer's disease or related disorder, mainly recruited through national Alzheimer family Associations members of Alzheimer Europe. A possible bias could exist due to the profile of carers who are seeking the help of such organisations. This bias and its consequences are discussed in the symposium. Each country involved in this survey was asked to gather 30 questionnaires. In some cases, this number was surpassed, whilst in others it was not.

At this point, the qualitative nature of this survey should be emphasized: the impressions, experiences and opinions of those interviewed are clearly expressed. It should be mentioned that:

• this is a survey and not an epidemiological study,
• answers to the questionnaire represent the subjective impression of carers about topics they have been asked about: status of the person with dementia, medical matters etc
• data from each country are too small to reflect reliably the situation at national level. Differences from one country to another may be linked to the kind of services offered by the Association, national health structures and many other local factors.

Objectives

This European survey has been designed:

• to shed light on the circumstances in which presently the diagnosis is disclosed to the sufferer and the relatives,
• to have a clearer idea about the information provided by health professionals to carers and families,
• to collect carers' opinions about this information,
• to identify gaps and needs
• to provide guidelines to design a programme focused on optimizing the circumstances in which the diagnosis is disclosed.

Methodology

To obtain the information the survey was conducted using a structured questionnaire. The questionnaire was designed to be self-administered but, when necessary, interviewees were helped to complete it. Results obtained were collated and expressed both in absolute numbers and percentages.

In addition to analysis of raw data (global and per country), some subgroups have been isolated and studied: spouses and sons/daughters as carers, specialists and general practicioners as physicians. Specific cross-tabulations were carried out to know of any association between different factors. Chi-Square tests have been performed for statistical analysis.

Results

At the end of the project a report was written which contained the main findings. The survey showed that a diagnosis is still made at a later stage of the disease. The delay between the moment when the family perceives that something is wrong and the confirmation of a diagnosis is reported to be over a year in 45% of the survey participants. Furthermore, nearly half of the respondents said that the person with dementia would have been unable to understand the full implications of the diagnosis, which similarly suggests that the diagnosis was made at a later stage.

The survey also highlighted the lack of information provided by health professionals to carers and families. Carers clearly expressed their opinion that information on the disease provided by professionals was not sufficient and regretted in particular the small amount of time professionals dedicated to explanations.

If you are interested in receiving this survey, please contact the Alzheimer Europe office: info@alzheimer-europe.org