“My story, our rights”—navigating the system when living with young onset dementia in Finland

Issakainen, M. ORCID: https://orcid.org/0000-0001-7471-2148, Lampinen, P., Astell, A. ORCID: https://orcid.org/0000-0002-6822-9472, Boger, J. ORCID: https://orcid.org/0000-0001-6150-151X, Nedlund, A.-C. ORCID: https://orcid.org/0000-0003-0204-4536, Nygård, L. ORCID: https://orcid.org/0000-0003-1813-7390 and Mäki-Petäjä-Leinonen, A. ORCID: https://orcid.org/0000-0001-7142-3498 (2025) “My story, our rights”—navigating the system when living with young onset dementia in Finland. Humanity & Society, 49 (3). pp. 327-348. ISSN 2372-9708 doi: 10.1177/01605976251324438

Abstract/Summary

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.

Item Type	Article
URI	https://centaur.reading.ac.uk/id/eprint/122088
Identification Number/DOI	10.1177/01605976251324438
Divisions	Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Publisher	SAGE Publications
Download/View statistics	View download statistics for this item