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I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway

OBJECTIVE: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvemen...

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Autores principales: Telenius, Elisabeth Wiken, Eriksen, Siren, Rokstad, Anne Marie Mork
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7430453/
https://www.ncbi.nlm.nih.gov/pubmed/32801195
http://dx.doi.org/10.1136/bmjopen-2019-035886
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author Telenius, Elisabeth Wiken
Eriksen, Siren
Rokstad, Anne Marie Mork
author_facet Telenius, Elisabeth Wiken
Eriksen, Siren
Rokstad, Anne Marie Mork
author_sort Telenius, Elisabeth Wiken
collection PubMed
description OBJECTIVE: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services. METHODS: An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis. RESULTS: Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am. CONCLUSIONS: People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.
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spelling pubmed-74304532020-08-24 I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway Telenius, Elisabeth Wiken Eriksen, Siren Rokstad, Anne Marie Mork BMJ Open Qualitative Research OBJECTIVE: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services. METHODS: An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis. RESULTS: Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am. CONCLUSIONS: People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia. BMJ Publishing Group 2020-08-16 /pmc/articles/PMC7430453/ /pubmed/32801195 http://dx.doi.org/10.1136/bmjopen-2019-035886 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Qualitative Research
Telenius, Elisabeth Wiken
Eriksen, Siren
Rokstad, Anne Marie Mork
I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title_full I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title_fullStr I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title_full_unstemmed I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title_short I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway
title_sort i need to be who i am: a qualitative interview study exploring the needs of people with dementia in norway
topic Qualitative Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7430453/
https://www.ncbi.nlm.nih.gov/pubmed/32801195
http://dx.doi.org/10.1136/bmjopen-2019-035886
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