Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers
dc.contributor.author | Sagbakken, Mette | |
dc.contributor.author | Nåden, Dagfinn | |
dc.contributor.author | Ulstein, Ingun | |
dc.contributor.author | Kvaal, Kari | |
dc.contributor.author | Langhammer, Birgitta | |
dc.contributor.author | Rognstad, May Karin | |
dc.date.accessioned | 2018-01-03T14:18:29Z | |
dc.date.accessioned | 2018-02-23T12:53:34Z | |
dc.date.available | 2018-01-03T14:18:29Z | |
dc.date.available | 2018-02-23T12:53:34Z | |
dc.date.issued | 2017 | |
dc.identifier.citation | Sagbakken M, Nåden D, Ulstein I, Kvaal K, Langhammer MB, Rognstad MK. Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers. BMC Health Services Research. 2017;17(1) | en |
dc.identifier.issn | 1472-6963 | |
dc.identifier.uri | https://hdl.handle.net/10642/5686 | |
dc.description.abstract | Background Frontotemporal dementia (FTD) constitutes on average 10–15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions. Methods A qualitative, descriptive, and explorative design were employed to address the aims of this study. We interviewed nine relatives of people with FTD and similar conditions living in nursing homes, and two relatives of people living at home but attending day center 5 days a week. Results Relatives described the transition from being a close relative to someone who had little influence or knowledge of what constituted the care and the daily life of their loved ones. According to relatives’ descriptions, patients are deprived of dignity in various ways: through limited interaction with peers and close relatives, limited confirmation of identity through staff who know them well, lack of possibilities for making autonomous decisions or entertaining meaningful roles or activities. Examples provided from the day care centres show how dignity is maintained through identity-strengthening activities conducted in different places, under various kinds of supervision and care, and together with people representing different roles and functions. Conclusions Maintaining a link with the world outside the institution, through closer cooperation between the institution and family members, and/or by the use of day care centres, seems to facilitate prevention of many of the factors that may threaten dignified care. | en |
dc.language.iso | en | en |
dc.publisher | BioMed Central | en |
dc.rights | © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. | en |
dc.rights.uri | http://creativecommons.org/licenses/by/4.0/ | |
dc.subject | Dementia | en |
dc.subject | Dignity | en |
dc.subject | Relatives | en |
dc.subject | Nursing homes | en |
dc.subject | Day care centre | en |
dc.title | Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers | en |
dc.type | Journal article | en |
dc.type | Peer reviewed | en |
dc.date.updated | 2018-01-03T14:18:29Z | |
dc.description.version | publishedVersion | en |
dc.identifier.doi | http://doi.org/10.1186/s12913-017-2378-x | |
dc.identifier.cristin | 1478590 | |
dc.source.journal | BMC Health Services Research |
Files in this item
This item appears in the following Collection(s)
-
HV - Institutt for sykepleie og helsefremmende arbeid [1385]
HV - Department of Nursing and Health Promotion
Except where otherwise noted, this item's license is described as © The Author(s). 2017
Open Access
This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.