PortoFaro – A Safe Haven for Young People with Dementia: Subprojects at the Dementia Competence Center

An estimated 8,100 persons with young-onset dementia live in Switzerland. They exhibit a broad spectrum of dementia disorders, including, more frequently, rarer forms of dementia. These are often not initially associated with dementia (e.g., personality changes, disinhibition, speech disorders). Persons with young-onset dementia and their family members rarely find services that are suitable for them. 

As part of the PortoFaro project, the health of persons with young-onset dementia, their partners, and their children is promoted through the creation of needs-based services. The project is led by the association mosa!k and implemented in collaboration with partner organizations. The IGW at OST is participating in PortoFaro with four subprojects:

Needs Assessment: Through focus group interviews, the needs and experiences of a) persons with young-onset demenita and their family members, as well as b) professionals, are systematically documented and analyzed. The findings form the empirical basis for all further steps.

Literature Review: A scientific literature review examines which measures are recommended internationally to support persons with young-onset dementia following diagnosis and how stakeholders in the health and social services sectors should collaborate in this regard.

Development and Pilot Testing of an Mindfulness-Based Stress Resudition (MBSR)-Based Intervention: Based on the needs assessment and literature review, a model for supporting persons with young-onset dementia and their family members will be developed and piloted. The focus is on a MBSR-oriented intervention for stress reduction—for both those affected and their family members.

Modelling: Parallel to the three sub-research projects, the PortoFaro model is being developed through an iterative process. The overall project management, steering committee, and user advisory board continuously contribute their perspectives, while findings from the working groups are continually incorporated. The result is a practical logic model: It shows which resources enable which services, under what circumstances people seek out these services, and what impact they have. At the same time, the model highlights how the various actors in the care system interact—and where their combined efforts are most effective.

• Website links:
  • Main Project PortoFaro: https://portofaro.ch/
  • Subprojects at OST:
    • Needs Assessment – (see separate form)
    • Non-pharmaceutical interventions for people living with young-onset or frontotemporal dementia and their caregivers: a systematic review: https://www.ost.ch/de/projekt/non-pharmaceutical-interventions-for-persons-living-with-young-onset-or-frontotemporal-dementia-and-their-caregivers-a-systematic-review-new67a0b46a64f69162510587
    • Development and Pilot Testing of an Mindfulness-Based Stress Resudition (MBSR)-Based Intervention for people with young onset dementia (see separate form)