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

doi:10.1017/S0144686X21001525

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 journal › Article › peer-review

2 Citations (Scopus)

13 Downloads (Pure)

Abstract

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 language	English
Pages (from-to)	1934-1953
Number of pages	20
Journal	Ageing and Society
Volume	43
Issue number	8
Early online date	20 Oct 2021
DOIs	https://doi.org/10.1017/S0144686X21001525
Publication status	Published - Aug 2023
Externally published	Yes

Keywords

early onset dementia
human rights
legislation
autonomy
participation
employment
stigma
inter-disciplinarity

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1017/S0144686X21001525Licence: CC BY

experiences-of-influencing-ones-own-life-when-living-with-working-age-dementiaFinal published version, 269 KBLicence: CC BY

Cite this

@article{e252431c7cdb4c21ab02108f470fb4b7,

title = "Experiences of influencing one's own life when living with working-age dementia",

abstract = "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.",

keywords = "early onset dementia, human rights, legislation, autonomy, participation, employment, stigma, inter-disciplinarity",

author = "Mervi Issakainen and Anna M{\"a}ki-Pet{\"a}j{\"a}-Leinonen and Sirkkaliisa Heimonen and Ann-Charlotte Nedlund and Arlene Astell and Jennifer Boger and Sari Risannen and Louise Nyg{\aa}rd",

note = "Funding information: This study is a part of the research project {\textquoteleft}Dementia or Mild Cognitive Impairment: @ Work in Progress{\textquoteright} supported by the Academy of Finland (grant number 318848); Swedish Council for Health, Working Life and Welfare, FORTE (grant number 2017-02303); the Canadian Institute for Health Research (grant number MYB155683) under the framework of the JPI MYBL; and the Ontario Shores Research Chair in Dementia Well-being (AA); as well as the research project Working Life and Memory Impairment – Mental Wellbeing, Legal Security and Occupational Capacity of People with Early Onset Dementia{\textquoteright} supported by the Academy of Finland (grant number 314749).",

year = "2023",

month = aug,

doi = "10.1017/S0144686X21001525",

language = "English",

volume = "43",

pages = "1934--1953",

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AU - Issakainen, Mervi

AU - Mäki-Petäjä-Leinonen, Anna

AU - Heimonen, Sirkkaliisa

AU - Nedlund, Ann-Charlotte

AU - Astell, Arlene

AU - Boger, Jennifer

AU - Risannen, Sari

AU - Nygård, Louise

N1 - Funding information: This study is a part of the research project ‘Dementia or Mild Cognitive Impairment: @ Work in Progress’ supported by the Academy of Finland (grant number 318848); Swedish Council for Health, Working Life and Welfare, FORTE (grant number 2017-02303); the Canadian Institute for Health Research (grant number MYB155683) under the framework of the JPI MYBL; and the Ontario Shores Research Chair in Dementia Well-being (AA); as well as the research project Working Life and Memory Impairment – Mental Wellbeing, Legal Security and Occupational Capacity of People with Early Onset Dementia’ supported by the Academy of Finland (grant number 314749).

PY - 2023/8

Y1 - 2023/8

N2 - 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.

AB - 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.

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KW - human rights

KW - legislation

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KW - participation

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KW - stigma

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