Projekt Frontotemporal: “Op Jöck” (Germany)

Contact details

Name of organisation/individual

Caritasverband Düsseldorf e.V.


Hubertusstraße 5 40219 Düsseldorf


0211 1602-1752




Due to its rather low prevalence, frontotemporal degeneration (FTD) is little known to the public. People affected run through severe changes in character and behaviour which are hard to understand, let alone tackle, for their families and friends. Thus, interaction – also with people who are unaware of their situation – may easily lead to misunderstandings and embarrassment and ultimately result in rejection and withdrawal. Consequently, people with FTD and their carers often feel stigmatised and lead a solitary life. Since the number of cases is low, qualified support, self-help groups or activities they can join are usually out of reach for most of them. That is why we founded a hiking group for people with FTD and their care partners at the beginning of 2022. Our aims:  to offer people with FTD AND their carers an activity they can share,  to give people affected a feeling of competence: firstly, they can interact with others while participating in an everyday activity; secondly, it is usually an activity they enjoy because for many it is part of their disorder that they feel an unstoppable urge to walk; thirdly, their care partners depend just as much on the “guides” (my colleague and I) as them since only the latter know the way,  to give their carers an opportunity for exchange with people who understand their situation; however, the topic does not necessarily have to be the challenges of a life with FTD since the focus is on the shared activity,  to give both a feeling of acceptance in / by a group, to fight loneliness and isolation.