dc.contributor.author | Helvik, Anne-Sofie | |
dc.contributor.author | Hvidsten, Lara H. Thomasgaard | |
dc.contributor.author | Engedal, Knut | |
dc.contributor.author | Kersten, Hege | |
dc.contributor.author | Dourado, Marcia Cristina Nascimento | |
dc.contributor.author | Johannessen, Aud | |
dc.date.accessioned | 2024-06-06T08:37:42Z | |
dc.date.available | 2024-06-06T08:37:42Z | |
dc.date.created | 2023-08-02T10:34:42Z | |
dc.date.issued | 2023 | |
dc.identifier.citation | Helvik, A. S., Hvidsten, L., Engedal, K., Kersten, H., Dourado, M. C. N., & Johannessen, A. (2023). Living with young-onset dementia in the family – a mixed method study. Aging & Mental Health, 28(2), 254–261. | en_US |
dc.identifier.issn | 1360-7863 | |
dc.identifier.uri | https://hdl.handle.net/11250/3132792 | |
dc.description.abstract | Background: Studies on disease-related obstructions experienced in everyday life of younger people with dementia (YOD ≤ 65 years) and their families are encouraged.
Aim: To explore how the family carers experience six predefined topics that influence the everyday life and needs of persons with YOD.
Method: A quantitative and a qualitative study including family carers of persons with young-onset Alzheimer’s dementia (AD) and frontotemporal dementia (FTD). Seventy-four informants responded to the Camberwell Assessment of Needs in the Elderly (CANE) and individual interviews were conducted with 13 informants.
Results: Family carers of persons with YOD reported few unmet needs in the CANE assessment. Needs related to behavior and close relationships were reported significantly more frequent (p < 0.1) in persons with FTD than in persons with AD. From the qualitative data, six main themes were emphasized: daily activities turned upside down, involuntary loss of previous social network, losing close relationship, but maintaining a friendship with the spouse, unpredictable behavior adds burdens to a changing life, health and life risks, and economic insecurity for future life and caring costs.
Conclusion: Whilst family carers quantitatively reported unmet needs, the individual interviews reported several major difficulties in everyday life. | en_US |
dc.language.iso | eng | en_US |
dc.rights | Navngivelse 4.0 Internasjonal | * |
dc.rights.uri | http://creativecommons.org/licenses/by/4.0/deed.no | * |
dc.title | Living with young-onset dementia in the family - a mixed method study | en_US |
dc.type | Peer reviewed | en_US |
dc.type | Journal article | en_US |
dc.description.version | publishedVersion | en_US |
dc.rights.holder | © 2023 The Author(s). | en_US |
dc.source.pagenumber | 254-261 | en_US |
dc.source.volume | 28 | en_US |
dc.source.journal | Aging & Mental Health | en_US |
dc.source.issue | 2 | en_US |
dc.identifier.doi | https://doi.org/10.1080/13607863.2023.2243585 | |
dc.identifier.cristin | 2164436 | |
cristin.ispublished | true | |
cristin.fulltext | original | |
cristin.qualitycode | 1 | |