2002-2003: Disclosure of diagnosis
Alzheimer Europe members’ survey on disclosure of diagnosis to the person with dementia - Introduction
The OPDAL survey was designed to shed light on the circumstances in which 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 and Duration
This survey involved 323 active family carers, mainly recruited by Alzheimer Europe and its national members from 11 European countries. The survey was funded by an unrestricted grant from Janssen-Cilag.
The field process started on 5 March and ended on 30 August 2001.
323 Alzheimer family carers from 11 European countries were involved in this survey, mainly recruited through national Alzheimer family Associations members of Alzheimer Europe.
The characteristics of these 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.
This European survey has been designed:
- to shed light on the circumstances in which 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 optimising the circumstances in which the diagnosis is disclosed.
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 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.
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: firstname.lastname@example.org
Last Updated: Wednesday 25 April 2012