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

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

doi:10.1017/s0144686x21001525

Abstract

AbstractHaving 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.

Highlights

Dementia at any age brings many challenges into one’s life, such as coping with the diagnosis (e.g. Johannessen et al, 2019), finding ways to connect with others
If we are to recognise the views, preferences and life situations of people living with dementia when supporting access to their rights, we must pay careful attention to the different meanings they ascribe to such rights (Wolfe et al, 2020). The aim of this inter-disciplinary study is to explore how working-age people living with dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life
A concept of autonomy that acknowledges both social influence and an individual’s capability to reflect critically on and respond to it in different ways (Barclay, 2000; Showden, 2011) serves the best the aim of this study, which is to gain an understanding of how working-age people living with dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life

Summary

Introduction

Dementia at any age brings many challenges into one’s life, such as coping with the diagnosis (e.g. Johannessen et al, 2019), finding ways to connect with others People who develop early onset dementia, typically classified as before the age of 65 (Miyoshi, 2009), often face additional distinctive challenges, including changes in work, family relationships, self-esteem, loss or lack of meaningful occupation, and feelings of social isolation and dependency (Harris, 2004). Understanding the different factors that contribute to living well with early onset or ‘working-age’ dementia is highly important. Recent findings highlight the role of positive psychological resources, such as self-efficacy, optimism and self-esteem for living well with dementia (e.g. Lamont et al, 2020). Clare et al (2019) noted that in addition to these highly influential psychological factors, it is important to identify the contribution of different kinds of physical resources (e.g. sleep and subjective health), as well as social and environmental resources (e.g. social networks and status in community) to reach a more comprehensive picture. While a higher number of needs and mental health challenges are associated with lower quality of life (Millenaar et al, 2017), factors reflecting functional ability and social resources are associated with better quality of life of individuals living with dementia (Martyr et al, 2018)

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Conclusion