23.10.2018 “Living Books” tell the stories of their dementia
There are currently an estimated 148,000 people in Switzerland with dementia. Among the main focal areas of Switzerland’s National Dementia Strategy 2014–2019 are efforts to improve public aware- ness of the group of diseases associated with dementia and of destigmatisation and the eradication of prejudices and inhibition thresholds for social participation. To this end, the Swiss Alzheimer Association together with the foundation Science et Cité and the FOPH are organising three special pilot events.
A Living Library is an event in which people can be “borrowed” for conversations on particular topics, for instance someone affected by burnout, or a refugee, or a vision-impaired person – or, as in the present instance, someone with dementia. These are all people who have to struggle against prejudice or social exclusion. Under the Living Library concept, someone suffering from the condition, members of their family and professional experts make themselves available for personal conversations, for instance in the framework of an organised event.
The Swiss Alzheimer Association, the foundation Science et Cité and the FOPH are organising three Living Library events on the topic of “Demenz im Gespräch” (Talking about Dementia),to be held between autumn 2018 and spring 2019. These pilot events are aimed at empowering a broad public to engage with individuals with dementia and to break down anxieties about contact with them, thereby promoting understanding of the disease and those who suffer from it.
The unique Living Library format enables an unusual, low-threshold exchange to take place in a public setting in which people with dementia, family members and professionals can swap experiences and stories. These highly personal conversations give the “readers” an opportunity to imagine themselves in the situation of the Living Book and thus learn more about dementia.
The men and women who make themselves available as Living Books for these pilot events possess a great deal of knowledge of dementia drawn from practical experience, and this knowledge is both complemented and enriched. Other people with varied experience and professional expertise are selected for each of the three events. But the focus is primarily on people with early-stage dementia and on their family members. The organisers attach great importance to creating an atmosphere that is conducive to people with dementia, enabling these to engage with their role as experts on questions about living with dementia – yet without putting them under excessive pressure. Staff from the Swiss Alzheimer Association and their regional sections play an active part in these events.
The pilot project is monitored and evaluated by Science et Cité. The findings will be taken into account in the creation of an event manual by the Swiss Alzheimer Association, which will serve as a practical guide for other such events. The first event was held inBerne in September 2018. An event will also be organised in Ticino by the end of the year. The series will be concluded by a pilot event in French-speaking Switzerland early in 2019.