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What it means to be an adult child of a person with dementia
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.ORCID iD: 0000-0002-1614-7379
2013 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 8, Art. no. 21676- p.Article in journal (Refereed) Published
Abstract [en]

The prevalence of dementia as a disease has increased worldwide with advancing age and growing population numbers, affecting whole families. However, most previous research does not separate the spouses or cohabitants from the adult children, but instead regards all next of kin involved in the everyday care of the person suffering from dementia as caregivers. This has made it difficult to find previous research regarding what it means to be an adult child of a person with dementia, and as such, the aim of this study is to explore that topic. The method used was narrative interviews analysed using phenomenological hermeneutics. Our comprehensive understanding showed that to be an adult child of a person with dementia means being burdened with the responsibility to act on behalf of the diseased parent despite a deep sense of grief and loss, which leads to frustration and despondence. The adult children’s existence and reality are threatened not only by the loss of the parent but also by the possibility that one day they too may inherit the disease. This could be compared to a psychic crisis, which is defined as a situation that leads to radical changes in the afflicted person’s relationship to life and reality, or, simply, ‘‘an upset in a steady state’’. The findings suggest that adult children of people with dementia are in need of support for a substantial period of time in order to adapt to the fact that they have lost a parent who is still alive. They also need information about the disease and the process of diagnosis and treatment to feel more a part of the process, as well as understand the behavior and needs of their parent.

Place, publisher, year, edition, pages
2013. Vol. 8, Art. no. 21676- p.
Keyword [en]
Adult children, dementia, life world, phenomenological hermeneutics, qualitative research
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:miun:diva-20628DOI: 10.3402/qhw.v8i0.21676ISI: 000325897500001Scopus ID: 2-s2.0-84886691968OAI: oai:DiVA.org:miun-20628DiVA: diva2:678050
Available from: 2013-12-11 Created: 2013-12-11 Last updated: 2016-10-18Bibliographically approved
In thesis
1. Long-Term Ongoing Structured Support in Early Stage of Dementia: A Family Affair
Open this publication in new window or tab >>Long-Term Ongoing Structured Support in Early Stage of Dementia: A Family Affair
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Demenssjukdomar drabbar mer än 35 miljoner människor världen över, en summa som kommer att fördubblas vart tjugonde år.

   Demens är en global störning av intellektuella funktioner: förmågan att minnas försämras, och förmågor som att orientera sig i tid och rum, språklig förmåga, tankeprocesser som att gå från tanke till handling, problemlösande, utföra saker praktiskt och känna igen föremål. Symtomen följs ofta av förändringar i beteende och personlighet, som låg initiativförmåga, irritation, grovt socialt beteende och humörsvängningar. I Sverige diagnostiseras 25 000 personer per år, totalt så lever 160 000 personer med sjukdomen i Sverige idag. I Sverige ställs diagnosen ofta utifrån blodprover, hjärnröntgen och Mini Mental Score Evaluation-Swedish Revision tillsammans med personens sjukdomshistoria.

 

Efter diagnosen har ofta anhöriga många frågor om hur livet kommer att te sig framöver, är det bra att flytta eller ska man bo kvar? Hur kommer sjukdomen att förändra livet och personligheten hos den drabbade? Tidigare studier visar att dessa frågor ofta förblir obesvarade, det är svårt att få en uppföljning hos läkare och det finns få länder där stöd efter diagnosen är vanligt förekommande.

   Sverige har sen 2009 lagstiftat om rätten till stöd till anhöriga och närstående med demenssjukdom eller andra kroniska sjukdomar med funktionshinder. Typen av stöd som ges skiljer sig däremot åt, Socialstyrelsen kom därför hösten 2013 ut med riktlinjer för hur stödet bör se ut för att vara effektivt: 8-10 träffar under 3-6 månader med information och socialt stöd till anhöriga.

En kommun i norra delen av Sverige har gett långvarigt stöd till personer med demenssjukdom och deras anhöriga sen 2006.

Ett nära samarbete med Landstinget i regionen och på senare tid även privata vårdcentraler i området har lett till att stöd kan erbjudas i direkt samband med diagnostillfället. Personerna deltar ofta i stödgrupp inom ca 4-6 veckor efter sin diagnos. Avhandlingens syfte var att fördjupa kunskapen om personernas upplevelse av att vara i stödgrupp under lång tid; den längsta i 4 år. Intervjuer gjordes med anhöriga och personer med demenssjukdom.

Resultaten visade att de par som varit med längst i stödgrupp kände sig trygga, de upplevde att de fick god kunskap om demens och var förberedda på den förändring som skulle komma. Resultaten visade också att vara vuxet barn till en person med demens innebar att vara tyngd av ansvar för att agera i den sjuka förälderns intresse trots en djup känsla av sorg of förlust vilket ofta leder till frustration med situationen. Relationerna inom familjen kan förändras efter demens diagnosen både till det bättre; att man sluter upp kring den demenssjuke föräldern men också till det sämre; att familjen splittras då relationerna utsätts för påfrestningar. Personerna med demenssjukdom som deltog i stödgrupperna upplevde och skattade sin känsla av sammanhang högt; att livet var meningsfullt, begripligt och hanterbart. Deras friska partner upplevde mindre begriplighet och hanterbarhet och de vuxna barnen mer meningsfullhet.

Avhandlingens resultat har legat till grund för en modell för stöd till personer med demenssjukdom och deras anhöriga kallat PER-modellen®; Pedagogisk, Emotionell och Relationsbaserad modell för stöd.

Abstract [en]

Dementia disorders affect more than 35 million people around the world, which will double every twenty years. Dementia is a global disruption of intellectual functioning; there is a decrease of memory ability and other intellectual abilities such as orientation, visuospatial- perceptive ability, language, thinking, executive abilities, problem solving, apraxia and agnosia.  These symptoms are often followed by behavioral changes and changes in the personality, such as loss of initiative, emotional instability, irritation, apathy, coarse social behaviour and mood changes. The most frequent symptoms were apathy, depression, irritability, and agitation. About 25, 000 persons are diagnosed with dementia each year in Sweden. Today, estimates are that 160, 000 persons in total are suffering from dementia in Sweden. In Sweden, most diagnoses are done in the primary health care setting by general practitioners  and are based on the person´s own history, interviews with next of kin and an Mini Mental Score Evaluation- Swedish Revision (MMSE-SR) along with blood work and a brain scan to rule out any other diseases.

After diagnosis the next of kin often have many questions about the coming lifestyle changes and ways to handle the personality changes that the person suffering from dementia may go through. Previous studies show that in many cases these questions are left unanswered, because it is difficult to get a follow up with a physician and there are few countries where support after diagnose is common.

   In 2009, the Swedish Parliament passed a new law that states that support is to be given to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities. There was, however, no detailed description of the extent or kind of services to be provided, and the municipalities had extensive freedom in implementing the legislation. In the autumn of 2013 the Swedish National Health Board therefore, issued guidelines where eight to ten meetings during a three- to six-month period with information and social support were recommended.A municipality in northern Sweden have a long term ongoing support to persons with dementia and their next of kin since 2006. A close collaboration with the geriatric clinic and private health centers has resulted in support being offered within 4-6 weeks after diagnose.  

 

The overall aim of this thesis was to explore experiences of living with dementia both as a sufferer and as a next of kin; and being part of a long-term ongoing support group, the longest for four years.

    Interviews were done with persons with dementia and their next of kin. Results showed that couples who had been the longest in a support group felt great comfort and support. They experienced that their knowledge about the disorder was good and that they could prepare for the changes to come.

Results also showed that to be an adult child of a person with dementia disease means being burdened with the responsibility to act on behalf of the diseased parent despite a deep sense of grief and loss, which leads to frustration with the situation. 

   Relationships within the family can sometimes change when a family member is affected by dementia. Sometimes for the better; where the family rallied to support the affected member and sometimes for worse; where the relationships were strained when pressure became too much. The persons with dementia who participated in the support groups experienced a great sense of coherence and felt that life was manageable, comprehensible and meaningful. Their healthy partners experienced less comprehensibility and manageability and the adult children more meaningfulness.

 

The results of the thesis have founded a model for support called PER-model®; Pedagogical, Emotional and Relationship based model of support.

Place, publisher, year, edition, pages
Sundsvall: Mittuniversitetet, 2014. 56 p.
Series
Mid Sweden University doctoral thesis, ISSN 1652-893X ; 197
Keyword
Dementia, Next of kin, Relationships, Support group
National Category
Humanities
Identifiers
urn:nbn:se:miun:diva-22673 (URN)978-91-87557-76-7 (ISBN)
Public defence
2014-09-12, M 108, Campus Sundsvall, Sundsvall, 10:15 (Swedish)
Opponent
Supervisors
Available from: 2014-08-29 Created: 2014-08-27 Last updated: 2014-09-11Bibliographically approved

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