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Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia

Background: People with younger onset dementia (YOD <65 years) experience a great transformation of existential life. Living alone, they lack the support of a partner, and have a higher risk of moving into a residential care facility. Aim: To explore how people living alone with YOD experience an...

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Autores principales: Johannessen, Aud, Engedal, Knut, Haugen, Per Kristian, Dourado, Marcia CN, Thorsen, Kirsten
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6605042/
https://www.ncbi.nlm.nih.gov/pubmed/31303758
http://dx.doi.org/10.2147/JMDH.S208424
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author Johannessen, Aud
Engedal, Knut
Haugen, Per Kristian
Dourado, Marcia CN
Thorsen, Kirsten
author_facet Johannessen, Aud
Engedal, Knut
Haugen, Per Kristian
Dourado, Marcia CN
Thorsen, Kirsten
author_sort Johannessen, Aud
collection PubMed
description Background: People with younger onset dementia (YOD <65 years) experience a great transformation of existential life. Living alone, they lack the support of a partner, and have a higher risk of moving into a residential care facility. Aim: To explore how people living alone with YOD experience and cope with transitions during the progression of dementia. Method: A longitudinal qualitative approach was used. From 2014 to 2018, we interviewed 10 persons with YOD every 6 months for up to four years. Findings: Two significant main transitions and themes were registered under the perspective; experiencing and coping with (1) receiving the diagnosis of dementia and (2) moving to a residential care facility, which covers two subthemes: moving to a supported living accommodation and moving to a nursing home. To get the diagnosis was initially experienced as a dramatic disaster, while moving to residential care were mainly experienced as positive. With efficient cognitive and emotion-focused coping strategies, the participants adapted and experienced a mostly good life for a long time. Conclusion: People with dementia can describe their lived experiences for a long time after receiving the diagnosis. They adapt and preserve a feeling of a rather good life by the efficient use of various coping strategies. High-quality public support is of significant importance to assist them in sustaining quality of life and vitality.
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spelling pubmed-66050422019-07-12 Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia Johannessen, Aud Engedal, Knut Haugen, Per Kristian Dourado, Marcia CN Thorsen, Kirsten J Multidiscip Healthc Original Research Background: People with younger onset dementia (YOD <65 years) experience a great transformation of existential life. Living alone, they lack the support of a partner, and have a higher risk of moving into a residential care facility. Aim: To explore how people living alone with YOD experience and cope with transitions during the progression of dementia. Method: A longitudinal qualitative approach was used. From 2014 to 2018, we interviewed 10 persons with YOD every 6 months for up to four years. Findings: Two significant main transitions and themes were registered under the perspective; experiencing and coping with (1) receiving the diagnosis of dementia and (2) moving to a residential care facility, which covers two subthemes: moving to a supported living accommodation and moving to a nursing home. To get the diagnosis was initially experienced as a dramatic disaster, while moving to residential care were mainly experienced as positive. With efficient cognitive and emotion-focused coping strategies, the participants adapted and experienced a mostly good life for a long time. Conclusion: People with dementia can describe their lived experiences for a long time after receiving the diagnosis. They adapt and preserve a feeling of a rather good life by the efficient use of various coping strategies. High-quality public support is of significant importance to assist them in sustaining quality of life and vitality. Dove 2019-06-28 /pmc/articles/PMC6605042/ /pubmed/31303758 http://dx.doi.org/10.2147/JMDH.S208424 Text en © 2019 Johannessen et al. http://creativecommons.org/licenses/by-nc/3.0/ This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php).
spellingShingle Original Research
Johannessen, Aud
Engedal, Knut
Haugen, Per Kristian
Dourado, Marcia CN
Thorsen, Kirsten
Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title_full Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title_fullStr Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title_full_unstemmed Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title_short Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
title_sort coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6605042/
https://www.ncbi.nlm.nih.gov/pubmed/31303758
http://dx.doi.org/10.2147/JMDH.S208424
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