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

Authors Johannessen A, Engedal K, Haugen PK, Dourado MCN, Thorsen K

Received 12 March 2019

Accepted for publication 15 May 2019

Published 28 June 2019 Volume 2019:12 Pages 479—492

DOI https://doi.org/10.2147/JMDH.S208424

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Cristina Weinberg

Peer reviewer comments 3

Editor who approved publication: Dr Scott Fraser


Aud Johannessen,1,2 Knut Engedal,1 Per Kristian Haugen,1 Marcia CN Dourado,3 Kirsten Thorsen1,4

1Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 2Campus Vestfold, University of South-Eastern Norway, Tønsberg, Norway; 3Center for Alzheimer’s disease, Institute of Psychiatry, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil; 4Norwegian Social Research, Oslo Metropolitan University, Oslo, Norway

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.

Keywords: early-onset dementia, existential needs, health care services, health promotion, qualitative study, transition

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