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Public Health and Dementia - with focus on access to society
Nordic Council of Ministers, Nordic School of Public Health NHV. Ageing and Health Norwegian Centre for Research, Education and Service Development Tønsberg, Norway.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis is to learn more about how to contribute to improving the daily lives of persons with dementia and those of their carers, and to increase these people’s participation in society.

Methods: The thesis comprises four studies carried out between2003and2011. Study Iwas based on qualitative interviews with 20 persons with early-onset dementia living in the Southern Norway. Study II was a qualitative study with interviews of 19 support contacts,from the Southern Norway. Study III was also based on interviews, in this study with 35 administrators in local authorities, from 32 Norwegian rural and urban local authorities.Study IV was an evaluation study of an intervention for carers of people with dementia and datawere obtained in three steps; (1) a self-derived questionnaires with space for comments, completed by 45 carers after the intervention and 12 months after the starting point of the intervention; (2) interviews with 13 carers 12 months after the starting point of the intervention and analysed together with the comments from the evaluation questionnaires; and (3) a new intervention for carers of younger persons with dementia was developed based onthe findings from the two first steps. The new intervention was evaluated with a self-report questionnaire completed by the carers with space for comments based on the findings from the two first steps. The questionnaire was completed by 48 carers after the new intervention and 12 months after the starting point of this intervention.

Main findings: StudyI describes how people with dementia experience living with dementia, their experiences of the process towards a dementia diagnosisand their descriptions of how they try to maintain their “quality of life”. Study II describes how support contacts perceive their work in dementia care. The study also shows the support contacts’motives for becoming a support contact and their encouraging and discouraging experiences while being a support contact. Furthermore, Study III describes the variation in the process that leads or does not lead to the use of support contacts as a service offered to families with dementia. The administrators’ skills, the accessibilityand management of the service are factorsthat influence this process of offering families with dementia a support contact.Study IV showsthat carers rated the original intervention as beingbeneficial for them,a benefit that remained. These findingscorrespondwith the findings from the interviews. Study IV also shows that the carers of younger persons with dementia benefited from the new intervention aimed at carers of younger people with dementia, a benefit that remained. The carershad valuable proposals for further interventions.

Conclusion: This thesis shows us that the opinions of these families, their supporters and those of other health personnel should not be overlooked when developing services in order to facilitate the provision of the chance to participate in society to families with dementia

Abstract [no]

Mål: Hovedmålet med denne avhandlingen er å få mer kunnskaper om hvordan man kan legge til rette for å bedre hverdagen tilpersoner med demens og deres pårørende,samthvordan man kan bidra til å øke deres muligheter til deltagelse i samfunnet.

Metode: Avhandlingen består av fire studier som ble gjennomført i tidsrommet 2003-2011. Studie Ivar basert på kvalitative intervjuer med 20 personer som hadde fått diagnosen demens før de fylte 65 år, som kom fra Sør-Norge. Studie II var en kvalitativ studie hvor 19 støttekontakter ble intervjuet,også disse ble inkludert fraSør-Norge.StudieIII baserte segpå intervjuer, hvor 35 ledere fra 32 norske kommunerble inkludert. Disse kommunenerepresenterte store og små byer og bygder.Studie IV var en intervensjonsstudie for pårørende til personer med demens, og data var innhentet gjennom tre steg; (1) et selvutfyllende spørreskjema med plass til kommentarer, som ble fylt ut av 45 pårørende etter intervensjonen og 12 måneder etter oppstart av intervensjonen; (2) intervjuer av 13 pårørende 12 måneder etter oppstart av intervensjonen,og analysert sammen med kommentarer fra spørreskjemaene; og(3) basert på funnene ide to første stegene ble en nyintervensjonfor pårørende til yngre personer med demens(< 65 år) utviklet. Evalueringsskjemaene til denne nye intervensjonen ble utviklet på bakgrunn av funn fra de to første stegene i Studie IV. Skjemaene blefylt ut av 47 pårørende etterintervensjonen og 12 måneder etter oppstartav intervensjonen.Disse skjemaene hadde også plass til kommentarer.

Hovedfunn: Studie I beskriverhvordan mennesker med demens opplever å leve med demens og deres erfaringer knyttet til prosess som leder til å få stillet en demens diagnosen. Studien viserogsåhvordan de forsøker å opprettholde livskvalitet i det daglige. Studie II beskriver hvordan støttekontakter opplever deres arbeidsoppgaver i demensomsorgen. Studien viserogså støttekontaktenes motiver for å bli støttekontakt, og motiverendeog demotiverende erfaringer knyttet til det å være støttekontakt.Studie III beskrivervariasjonen i prosessen som leder til eller ikke leder til at støttekontakt tjenesten blir tildelt familier med demens. Lederes kunnskaper, organisering avkommunene og tilgjengelighet av tjenesten er variasjoner som påvirker tildelingen av en støttekontakt.Studie IV viser at pårørende hadde nytte av den opprinnelige intervensjonenogeffekten forble. Disse funn samsvarermed funn fra intervjuene med pårørende. Studien viser også at den nye intervensjonen for pårørende til yngre personer med demens var nyttig for disse pårørende og denne effekten forble. Pårørende forbedret intervensjonene og de hadde verdifulle forslag til videre utvikling av intervensjonene.

Konklusjon: Denne avhandlingen viser at disse familiene, støttekontaktene og annet helsepersonells meninger ikke må bli oversett når en skalutvikle tjenestetilbud og tilrettelegge tjenester slik at det er mulig for familier med demens å delta i samfunne

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden , 2012. , 71 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2012:6
Keyword [en]
accessibility, dementia, health promotion, services, U niversal Design
Keyword [no]
ilgjengelighet, demens, helsefremmende arbeid, tjenester, Universell Design
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3763ISBN: 978-91-86739-34-8 (print)OAI: oai:DiVA.org:norden-3763DiVA: diva2:787154
Public defence
2012-06-20, Nordic School of Public Health NHV, Göteborg, Sweden, 13:00 (Norwegian)
Opponent
Supervisors
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved
List of papers
1. Motivating and discouraging factors with being a support contact in the dementia care sector:: a grounded theory study
Open this publication in new window or tab >>Motivating and discouraging factors with being a support contact in the dementia care sector:: a grounded theory study
2012 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 15, no 1Article in journal (Refereed) Published
Abstract [en]

Background: People with dementia need different forms of assistance as the disorder progresses. In Norway, support contacts work as ‘paid friends’ and their role can be compared with respite carers or voluntary workers' in other Western countries. Support contacts may be helpful within the dementia sector, especially in the early stages of the disorder, though they are rarely used.

Aim: The aim of this study was to find out how the support contacts perceive their work.

Method: Grounded theory, a qualitative method, with interviews of 19 participants (14 women and five men aged 40–75 years) during 2009–2010, from 12 local authorities.

Findings: This study describes the participants' motives for becoming a support contact and their encouraging and discouraging experiences while being a support contact, expressed as four sets of opposites; flexibility vs rigidity; being compensated vs feeling used; affiliation vs abandonment; and satisfaction vs lack of satisfaction.

Conclusion: Greater flexibility, adequate compensation, a sense of affiliation and satisfaction, together with potential for building relationship with families, are factors that will encourage dementia care supporters to continue with their work.

Keyword
dementia, health promotion, respite care, voluntary workers' experiences
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3761 (URN)10.1080/15017419.2012.667000 (DOI)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved
2. Why do administrators employ or not employsupport contacts?: A Norwegian qualitative study
Open this publication in new window or tab >>Why do administrators employ or not employsupport contacts?: A Norwegian qualitative study
2012 (English)In: Nordic Journal of Social Research, ISSN 1892-2783, Vol. 3Article in journal (Refereed) Published
Abstract [en]

This is a qualitative study based on statements by administrators in thedementia sector in Norwegian local authorities. The aim of the present study isto investigate the arguments for and barriers to the allocation and organizationof support contacts for people with dementia and their families. Variousservices are needed to help these families from being isolated. ‘Supportcontacts’ can be one such service, yet the local authorities rarely use them inthe Norwegian dementia-care sector and little is known about why that is so.Support contacts are ‘paid friends’ and their tasks can be compared to respitecarers or volunteers in other Western countries. The data was gathered frominterviews with 35 informants (34 women and one man, aged 35-66 years)during 2011, from 32 local authorities in Norway. The analysis of data involveda qualitative content analysis. Three main categories emerged: ‘knowledge’,‘accessibility’, and ‘management’. ‘Knowledge’ describes the range of anadministrator's familiarity both with dementia and with the legislationconcerning the offering of a support contact to families with dementia, and ithas two subcategories: ‘formal knowledge’ and ‘experiential knowledge’. Thecategory of ‘reaching out’ describes the circumstances that lead families withdementia to apply for help and contains the subcategories of ‘supplyinginformation’ about the service and ‘characteristics of target group’ receiving asupport contact. The category of ‘management of services’ describes thevarious ways in which a supporter service may work satisfactorily and containsthe subcategories ‘recruitment’ and ‘organization’. In conclusion, theadministrators consider support contacts to be a valuable service. The authorsconclude that managers of local authorities need to organize theirdepartments in a way that administrators will have sufficient knowledge aboutmaking the service available and supporter contacts will receive the necessaryguidance and knowledge to maintain the service effectively.

Keyword
accessibility, dementia, health promotion, public health, services
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3760 (URN)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved
3. Experiences of persons with early-onset dementia in everyday life: a qualitative study.
Open this publication in new window or tab >>Experiences of persons with early-onset dementia in everyday life: a qualitative study.
2013 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 4, 410-24 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The small number of existing studies confirms that people with early-onset dementia (EOD) need special assistance from the beginning and as the disease progresses. There is a need to develop services to respond to the specific needs of persons with EOD.

AIM: To find out how people experience living with early-onset dementia, and to assess the implications for practice and the development of further services.

METHOD: Grounded theory, a qualitative method, with interviews of 20 informants (aged 54-67 years; 12 of them men) during 2010-2011.

FINDINGS: One category, the process toward a dementia diagnosis, covered two subcategories; describing changes and being diagnosed. Another category fighting for dignity describes how the informants try to maintain their quality of life, covering two subcategories; intrapsychic challenges and social challenges.

CONCLUSION: Health services should give persons with EOD the ability to maintain contact with society and their voices should not be overlooked.

Keyword
early-onset dementia, health promotion, health services, subjective experiences, young persons with dementia
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3762 (URN)10.1177/1471301211430647 (DOI)24336952 (PubMedID)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved

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