“We need more groups for people with early stage dementia”

22.12.2009 11:19

German Alzheimer's Society calls for more offers for those affected

Groups for people with early stage dementia offer those affected the opportunity to obtain information and a protected, trusting space to exchange ideas. Topics such as dealing with the illness, changes in the relationship, help in everyday life and financial and legal issues can be discussed here.

At the invitation of the German Alzheimer Society, group leaders and two participants from such groups met in Kassel on December 8, 2009 to exchange experiences about this relatively new offer from the Alzheimer societies. “I have had the diagnosis since February. I was lucky enough to have been referred to the Alzheimer’s Society by my specialist,” said Ms. Merlin* (*name changed) from Bavaria. She emphasized how important this offer is for her: “You look forward to the meetings when everything is calm and harmonious. I have my place there.” Particularly for younger patients, the problems of leaving work early and securing their financial existence are often the focus.

Nevertheless, there is a lot of laughter – that was confirmed by everyone present. “We must not be left alone,” says Ms. Merlin, summarizing her demand for support. Unfortunately, there is great uncertainty as to how the offer can be financed permanently. At the moment, groups for people in the early stages of the disease who do not yet need care are financed through donations, foundations and municipal model projects. Due to their illness, self-help groups for those affected cannot usually be organized by the sufferers themselves - they need professional and continuous support. 

An important topic at the workshop was the involvement of those affected: people with dementia would like to get involved as far as they can. They want to express their opinion and have an influence on the things that affect them. “I'm forgetful, but I'm not stupid,” said a speaker who was affected by the disease at the 2006 International Alzheimer's Congress in Berlin and advocated that the focus should be on the abilities and not the deficits of dementia sufferers.

The German Alzheimer Society has been inviting people with dementia to speak at congresses and conferences since 2006. “But that’s not enough,” said Sabine Jansen, managing director of the German Alzheimer Society. “We need more group offerings nationwide for people with dementia in the early stages. This also includes a permanent financing option.”