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Self-help organisations

Coping with caring


When I found out that my wife had Alzheimer’s disease I didn’t know what to do. I hadn’t really understood everything the doctor had explained. It was too much at once. A couple of weeks later a friend gave me the telephone number of an Alzheimer’s disease organisation. They gave me leaflets and explained things to me in a way that I could understand. Since then I have been to carer support group meetings. We share a great deal. At first I didn’t feel that I had anything to offer people but I soon realised that like me, people appreciated a listening ear, a shoulder to cry on and someone to laugh with.

I want people to know that there are support groups out there to guide them through the dark moments; there are people who understand what they’re going through. (Nancy Reagan)

Self-help organisations, like your nearest Alzheimer’s disease organisation, are generally set up and run by people who have knowledge of the disease and in many cases personal experience. By direct or indirect means members of such organisations try to provide information and support mainly to people caring for someone with dementia, but also to others who may be interested in information such as journalists, students and researchers.

Providing information

Many people suddenly find themselves responsible for caring for someone with dementia. Unsure about what the new role of carer involves and anxious to find out about the disease, they try to find as much information as possible. This tends to involve a great deal of time and energy as information is not always to be found in the same place. It is not always obvious who can provide particular information and some people are unaware of the kind of information they would benefit from having. For this reason, organisations not only provide the information you request but also keep in touch by means of newsletters, inform you about conferences, meetings or useful publications and can put you in touch with professionals who can provide specialised information and advice.

Carer support groups

Carer support groups can provide you with an opportunity to meet other people who are in a similar situation. They may have experienced similar problems and found solutions that might be helpful to you. Alternatively, you might benefit from simply knowing that you are not alone and that other people understand what you are going through. You might find that it is easier to discuss problems with people who have personal experience of such a problem. You might not always find a solution but a problem shared is a problem halved. If you are not used to socialising on your own a support group meeting might provide you with an ideal opportunity to meet people and even attend social events or join in on fund raising efforts. Some organisations organise events for both carers and people with dementia together. You can go along to carer support group meetings without having to commit yourself. Just go along to the next one being held in your area and see how you like it.

Increasing awareness of Alzheimer’s disease and other forms of dementia

One of the aims of self-help organisations is often to increase public awareness of Alzheimer’s disease and other forms of dementia, as well as of health care providers and governments. In order to do this it is important to be in touch with carers and to understand their needs. With the knowledge of carers’ experiences and opinions, such organisations can work towards improving the quality of information and advice. They are also in a better position to fight for appropriate services and facilities. For this reason, even if you do not want to attend meetings you can still support an organisation in their efforts by becoming a member and at the same time keep yourself informed of anything that might help you



Last Updated: Tuesday 11 August 2009