Introduction

After being informed of the diagnosis of dementia of a loved one, the relatives of people with dementia face many difficult questions which are specific at the onset of the disease. They not only need further information on the disease itself, but also advice and information on how to react to their loved one, how to cope with the effects of the disease on the patient and on family and friends, how to reorganise the family circle, how to manage practical decisions about daily life and also how to deal with their own emotions.

Health professionals involved in the diagnosis of Alzheimer’s disease and other forms of dementia cannot be expected to provide full information on the various questions which carers of people with dementia may have at the onset of the disease. Therefore carers of people with dementia very often face these problems on their own and are not aware of the possibilities they have to receive specific counselling from Alzheimer associations. Often, carers of people with dementia contact Alzheimer associations and other services when they are already encountering their first difficulties coping with the situation.

Alzheimer Europe has already produced a care manual destined for informal carers. However, whilst this manual provides a very extensive list of problems, it may be daunting for carers who have just recently been informed of the diagnosis of a loved one. The information for carers of people with dementia at the onset of the disease needs to be carefully adapted, so as to correspond to the very specific needs of carers at this time and not to overburden them with difficulties which they may not need to face for quite some time or which they may not face at all. For this reason, we decided to write a manual to respond to their specific needs.

Duration

The project started in February 2004 and ended in June 2005.

Participants

The working groups consisted of :

Objectives

Alzheimer Europe fully believes that counselling shortly after a diagnosis of dementia may prepare carers of people with dementia to cope better with a difficult situation. Health professionals should be an important link in directing carers of people with dementia to an Alzheimer association, which may help carers with the many questions they may have at the onset of the disease.

The main aim of this project is to ensure that every carer of someone who has been diagnosed with Alzheimer’s disease (or another form of dementia) has access to information, support or counselling.

Methodology

Stage 1

• Launch of the project with a meeting in Luxembourg on 21 and 22 February 2004
• Literature review
• Meeting in May 2004 in Prague to discuss the dissemination strategy for the manual
• Drafting of the manual by Alzheimer Europe in collaboration with the project participants
• Meeting to discuss amendments
• Redrafting and finalisation of the manual
• Approval by the Board of Alzheimer Europe
• Publication and dissemination of the manual

Stage 2

• Meeting to discuss the writing of a training manual (to be used by Alzheimer Associations)
• Drafting of the training manual by Alzheimer Europe in collaboration with the project participants
• Meeting to discuss amendments
• Redrafting and finalisation of the training manual
• Approval by the Board of Alzheimer Europe
• Publication and dissemination of the training manual

Results

• Manual for carers of people who have been recently diagnosed with Alzheimer’s disease or another form of dementia.
• Training manual for Alzheimer Associations