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Störande beteende i interaktionen mellan personer med demens och deras vårdare
Umeå University, Faculty of Medicine, Department of Nursing.
2004 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Det övergripande syftet med avhandlingen var att belysa innebörden i interaktionen mellan personer med demens och så kallat störande beteende och deras vårdare. I delstudierna I och II deltog en kvinna med frontallobsdemens och störande beteende (Ruth) respektive en kvinna med schizofreni, demens och störande beteende (Alice) och deras vårdare. Fjorton respektive 30 deltagande observationer samt sex respektive sju reflekterande samtal med vårdare genomfördes. Texterna tolkades med hjälp av kvalitativ innehållsanalys. I delstudie III gjordes narrativa intervjuer med sex vårdare och i delstudie IV genomfördes 10 informella samtal med tre personer med demens och störande beteende. Dessa texter tolkades med hjälp av fenomenologisk hermeneutisk metod.

Innebörden i interaktionen mellan personerna med demens och störande beteende och deras vårdare handlar om att befinna sig i kaos och pendla mellan motsatser: att känna sig hemlös och hemma och att ”vara herre ”och ”vara slav”. Vårdarna upplever konflikter mellan att göra gott för individen och/eller kollektivet samt mellan de demensdrabbades beroende och önskan om självbestämmande.

Såväl personerna med demens och störande beteende som deras vårdare pendlar mellan att känna sig hemlösa och hemma. Ruth lever i en fragmenterad värld där hon slåss för att skydda sitt revir. Hon kämpar också för att bli bekräftad samtidigt som hon bekräftar andra. Vårdarna bekräftar henne genom att möta henne i hennes värld. Alice lever i en tudelad värld där hon pendlar mellan ”himmel och helvete”. Hon misstror vårdarnas avsikter och slåss för sitt liv men hon visar också sin uppskattning och bekräftar vårdarnas ansträngningar. Även vårdarna upplever en tudelad värld. Innebörden i att leva med demens och störande beteende på institution handlar om att vara omgiven av oordning, fångad av begränsningar, satt åt sidan men också räknad med. Vårdarna befinner sig också i kaos och förstår inte vad det störande beteendet betyder. De upplever att de är fråntagna initiativet och känner sig utmattade och hjälplösa. Då och då upplever de att de har kontroll och känner sig dugliga och accepterade.

Vårdarna pendlar mellan att ”vara herre” och ”vara slav”. Dialektiken mellan herre och slav handlar om kampen för ömsesidig bekräftelse. När vårdaren möter den demensdrabbade i sin egen (vårdarens) värld reduceras personen med demens till ett objekt. Därmed objektifierar vårdaren också sig själv. När vårdaren möter personen med demens i hans eller hennes värld, betraktar vårdaren den demensdrabbade som en betydelsefull person vars existens är viktig att bekräfta. Därmed känner sig också vårdaren betydelsefull.

I hemmastaddheten bekräftas både personen med demens och vårdaren och kampen mellan herre och slav övergår i en Jag- Du relation. Störande beteenden är beteenden som inte bekräftar den andre. När vårdarna inte blir bekräftade upplever de personerna med demens vara störande och när personerna med demens inte blir bekräftade upplever de vårdarna vara störande. Bekräftelse uppstår i interaktioner som präglas av hemmastaddhet medan störande beteende visar sig i interaktioner som kännetecknas av hemlöshet.

Place, publisher, year, edition, pages
Umeå: Omvårdnad , 2004. , 63 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 906
Keyword [en]
Nursing
Keyword [sv]
Omvårdnad, bekräftelse, demens, etiska problem, fenomenologisk hermeneutik, hemmastaddhet, hemlöshet, herre och slav, kvalitativ innehållsanalys, schizofreni, störande beteende
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-311ISBN: 91-7305-699-5 (print)OAI: oai:DiVA.org:umu-311DiVA: diva2:143043
Public defence
2004-10-01, Aulan, Vårdvetarhuset, Umeå universitet, Umeå, 13:00 (English)
Opponent
Supervisors
Available from: 2004-09-07 Created: 2004-09-07 Last updated: 2010-10-22Bibliographically approved
List of papers
1. Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and 'behavioural disturbances', and on her care providers
Open this publication in new window or tab >>Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and 'behavioural disturbances', and on her care providers
2001 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 36, no 2, 256-265 p.Article in journal (Refereed) Published
Abstract [en]

AIM: The study aims to illuminate how one woman with severe dementia and so-called behavioural disturbances acts in relation to her care providers and how the care providers act in relation to her. METHODS: Fourteen participant observations, including one woman with dementia and six care providers, were performed. A reflective dialogue focusing on the interaction between the woman and her care providers followed each observation. The tape-recorded observational notes and reflective dialogues were fixed as a text, which was subjected to a thematic content analysis. FINDINGS: The main findings are that the interaction between a woman with severe dementia and "behavioural disturbances" and her care providers relates to privacy, identity, autonomy and security. The phenomena are intertwined and also in conflict with each other. Interaction is a complex dialectic process in which those who are engaged meet problems that can be solved and are involved in dilemmas that cannot be solved, only related to.

Keyword
autonomy, behavioural disturbances, dementia, identity, interaction, participant observation, privacy, reflective dialogue, security, thematic content analysis
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-4077 (URN)10.1046/j.1365-2648.2001.01966.x (DOI)11580800 (PubMedID)
Available from: 2004-09-07 Created: 2004-09-07 Last updated: 2017-12-14Bibliographically approved
2. Hovering between heaven and hell: an observational study focusing on a woman with schizophrenia, dementia and 'disturbing behaviour', and on her care providers
Open this publication in new window or tab >>Hovering between heaven and hell: an observational study focusing on a woman with schizophrenia, dementia and 'disturbing behaviour', and on her care providers
(English)Article in journal (Refereed) Submitted
Identifiers
urn:nbn:se:umu:diva-4078 (URN)
Available from: 2004-09-07 Created: 2004-09-07 Last updated: 2010-01-27Bibliographically approved
3. Balancing between contradictions: the meaning of interaction with people suffering from dementia and "behavioral disturbances".
Open this publication in new window or tab >>Balancing between contradictions: the meaning of interaction with people suffering from dementia and "behavioral disturbances".
2005 (English)In: The International Journal of Aging & Human Development, ISSN 0091-4150, E-ISSN 1541-3535, Vol. 60, no 2, 145-157 p.Article in journal (Refereed) Published
Abstract [en]

Interacting with people who suffer from dementia poses a challenge for care providers, and the presence of behavioral disturbances adds a further complication. Our article is based on the assumption that behavioral disturbances are meaningful expressions of experiences. Six narrative interviews were conducted with care providers with the aim of illuminating the meaning of interaction with people suffering from dementia and behavioral disturbances. The interviews were tape-recorded, transcribed into text, and interpreted using a phenomenological hermeneutic methodology. The findings indicate that interacting with people with dementia and behavioral disturbances, as narrated by care providers, means balancing between contradictions concerning meeting the person in my versus her/his world, feeling powerless versus capable, and feeling rejected versus accepted. Interaction involves being at various positions along these continua at different points in time. Furthermore, it means facing ethical dilemmas concerning doing good for the individual or the collective. This is interpreted as a dialectic process and is reflected on in light of Hegel's reasoning about the struggle between the master and the slave.

National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-19107 (URN)10.2190/X2EN-XBDJ-EW6U-F363 (DOI)15801387 (PubMedID)
Available from: 2009-03-04 Created: 2009-03-04 Last updated: 2017-12-13Bibliographically approved
4. The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted to a residential home.
Open this publication in new window or tab >>The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted to a residential home.
2006 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, no 11, 1397-403 p.Article in journal (Refereed) Published
Abstract [en]

AIM: The aim of our study was to illuminate the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home. BACKGROUND: Living with dementia and so-called disturbing behaviour in an institution involves interaction with care providers and fellow residents and poses a challenge to all who are involved. METHODS: We asked the head nurses at a residential home to select persons with dementia and disturbing behaviour who were willing to be interviewed and able to communicate verbally. We performed 10 informal conversational interviews with three persons. The interviews were transcribed into text and interpreted using a phenomenological hermeneutic method inspired by Ricoeur's philosophy. RESULTS: The findings indicate that the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home, is about being surrounded by disorder, being trapped by restriction and being set aside, as well as about being included. The findings are interpreted as a collapse of relations to self and others intertwined with occasional episodes of togetherness. This is reflected on in relation to the literature on homelessness and at-homeness and loss and maintenance of personal and social selves. RELEVANCE TO CLINICAL PRACTICE: The view others have of the person with dementia and of disturbing behaviour determines the nursing care given. Taking the residents' personal history and actual context into account, disturbing behaviour may be seen as a way persons with dementia express their story and maintain their self.

National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-19056 (URN)10.1111/j.1365-2702.2006.01476.x (DOI)17038100 (PubMedID)
Available from: 2009-03-03 Created: 2009-03-03 Last updated: 2017-12-13Bibliographically approved

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