1995-1997: Telephone Helpline
Between 67 and 95 percent of people with Alzheimer’s disease are cared for at home. In most cases, the carers are family members, often fairly elderly. In the course of caring many questions and problems arise which carers are simply not prepared for. Such questions or problems can arise at any moment – even during the night when the carer is alone and either unable or reluctant to ask other people for advice. This not only disrupts sleep but can lead to anxiety. There are, of course, books which provide information about the different aspects of care. However, some people prefer to speak to someone directly about a problem. Others may have difficulty reading or have problems finding exactly what they want to know in a book. A 24 hour Alzheimer telephone helpline is therefore an extremely useful aid for carers and even people with dementia who want advice or information.
Funding and duration
The Alzheimer Telephone Helpline Project was funded by the European Commission under the programme "Actions in favour of people suffering from neurodegenerative diseases, more particularly Alzheimer type (DAT) and related disorders and their (informal) carers".
The project ran from September 1995 to January 1997.
The following member associations were involved in the project:
- Austria: Alzheimer Angehörige Austria
- Belgium: Alzheimer Liga
- Finland: Alzheimer-Keskusliitto
- Ireland: Alzheimer Society of Ireland
- Italy: Federazione Alzheimer Italia
- Luxembourg: Association Luxembourg Alzheimer
- Spain: Alzheimer España
- The Netherlands: Alzheimerstichting
- United Kingdom: Alzheimer Scotland-Action on Dementia
- United Kingdom: Alzheimer's Society
The main goals were:
- to develop a model for organising a 24 hour Alzheimer telephone helpline for caregivers, professionals and/or volunteers;
- to define a methodology considered as a model of “good practice” with the help of the European Associations which have already set up an Alzheimer telephone helpline;
- to develop guidelines and a training manual for Associations which want to start this kind of service or want to improve an existing service;
- to diffuse, at a later stage, these guidelines and the training manual to European Alzheimer Associations and other interested parties.
A survey was carried out to find out which countries had telephone helplines. Participants from countries which already had 24 hour Alzheimer telephone helplines were then asked to provide detailed information about their operation e.g. number of operators, whether they were paid or volunteers, equipment and premises, how the helpline was organised and set up, training of operators, funding, type of call received and any problems etc.
A meeting was held to discuss this information and work together in order to develop guidelines and a training manual. Three sub-groups were established to discuss:
- recruitment and training
- analysis and synthesis of enquiries and
- data collection and classification.
Finally, the manual was drafted, sent out for comment, amended and finalised.
The Alzheimer Telephone Helpline Manual is now online and can also be obtained in printed version from Alzheimer Europe. It contains examples of different kinds of helpline in use in Europe, details about the kind of enquiries that should be made when setting up a helpline, information about recruitment and training and details on how to set up a data collection system.
Last Updated: Wednesday 25 April 2012