Experiences of influencing one's own life when living with working-age dementia

Mervi Issakainen*, Anna Mäki-Petäjä-Leinonen, Sirkkaliisa Heimonen, Ann-Charlotte Nedlund, Arlene Astell, Jennifer Boger, Sari Risannen, Louise Nygård

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)


Having opportunities to make decisions and choices regarding one's life is crucial when living with dementia. This inter-disciplinary study draws on the concept of relational autonomy to explore how working-age people living dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life. The data consist of three focus group discussions conducted with 12 retired adults who developed dementia while still employed. The results illuminate various resources that enable a person to (a) handle their difficulties at work and related consequences with dignity, (b) manage everyday tasks and live a fulfilling life, and (c) fight the stigma associated with (working-age) dementia. Challenges related to these aspects reported by the participants reveal gaps and obstacles that impede the full realisation of the rights of people living with early onset dementia. This research highlights the need for workplace education for different stakeholders, equal and ongoing access to guidance and counselling for younger people who live with dementia, and an effort by society as a whole to eradicate stigma.
Original languageEnglish
Pages (from-to)1934-1953
Number of pages20
JournalAgeing and Society
Issue number8
Early online date20 Oct 2021
Publication statusPublished - Aug 2023
Externally publishedYes

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