“My Story, Our Rights”—Navigating the System When Living With Young Onset Dementia in Finland

This paper discusses the rights of people with young onset dementia in their everyday lives. It does this by collaborating with co-author Petri, who was diagnosed with dementia whilst of working age. Petri shares his story of navigating the system to find resources for living a good and valuable life with dementia, starting with the challenges he faced in getting a diagnosis and accessing services, through to advocating for people living with dementia to defend their rights. The narrative form of Petri’s overall story is progressive; it reveals a range of challenges yet portrays a person living as well as possible with dementia. Key themes in Petri’s story are accompanied by a dialogue of Finnish laws and regulations, as well as literature on dementia. Besides increasing awareness and fostering change, Petri sees opportunities such as advocacy work as a rehabilitative activity for himself and as a way to show that it is possible to live an active life with dementia. From a practical and ethical point of view, it is crucial that academic researchers carefully consider how to remain sensitive to the lived experience of realizing one’s rights and maintain a regular dialogue and transparency during the co-authoring process.