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People Living with a Dementia Diagnosis with No Eldercare at all: Who Are They?
Linköping University, Department of Culture and Society, Division of Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.ORCID iD: 0000-0002-7675-2415
Linköping University, Department of Culture and Society, Division of Ageing and Social Change. Linköping University, Faculty of Arts and Sciences. (Center for Dementia Research (CEDER))ORCID iD: 0000-0002-3033-9879
Linköping University, Department of Culture and Society, Division of Social Work. Linköping University, Faculty of Arts and Sciences. Karolinska Inst, Sweden; Stockholm Univ, Sweden.ORCID iD: 0000-0001-9369-1928
2022 (English)In: Journal of Aging & Social Policy, ISSN 0895-9420, E-ISSN 1545-0821, Vol. 34, no 6, p. 876-893Article in journal (Refereed) Published
Abstract [en]

Dementia is a non-curable disease that progressively affects peoples ability to handle their everyday life. Still, previous Swedish research found that many people living with dementia (PlwD) do not use any eldercare. In this study, we investigated the association between not using eldercare services and key social background factors: years with dementia, hospital care, and country of birth for PlwD. We identified all people aged 65+ diagnosed with dementia between January 2006 and March 2015 (n = 43,372) using secondary data analysis of information taken from multiple Swedish nationwide registers. Results showed that not using eldercare was more common among younger age groups and men. The likelihood of having no eldercare was three times higher for those cohabiting; notably, almost a fifth of the PlwD who had the diagnosis for four years or more did not have eldercare at all. Finally, people born outside Europe used eldercare less than persons born in Sweden. Since the public dementia policy in Sweden is basically geared toward PlwD in a later stage and primarily in residential care, there has been almost no policy development around the needs and rights of PlwD in their homes. This study provides a ground for reconsidering dementia policy regardless of the ethnic and cultural backgrounds of PlwD.

Place, publisher, year, edition, pages
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD , 2022. Vol. 34, no 6, p. 876-893
Keywords [en]
Dementia; social care; people with dementia; eldercare; socio-demographic factors; dementia care policy
National Category
Social Work
Identifiers
URN: urn:nbn:se:liu:diva-187868DOI: 10.1080/08959420.2022.2111165ISI: 000840048900001PubMedID: 35957610OAI: oai:DiVA.org:liu-187868DiVA, id: diva2:1691775
Note

Funding Agencies|European Union [764632]

Available from: 2022-08-31 Created: 2022-08-31 Last updated: 2023-03-29Bibliographically approved
In thesis
1. People living with dementia using eldercare in Sweden
Open this publication in new window or tab >>People living with dementia using eldercare in Sweden
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Personer som lever med demens använder äldreomsorgen i Sverige
Abstract [en]

Dementia is a major public health concern. Due to the progressive nature of the disease, people living with dementia (PlwD) may experience challenges at different stages of dementia deriving from functional, cognitive, and communicative disabilities and as a consequence experience restriction in performing everyday tasks. As a result, PlwD have an increasing demand for eldercare (including homecare and residential care), especially during the last years of life. This thesis aims at contributing to the understanding of the utilization of eldercare among older adults with and without dementia aged 65+ in Sweden. Although previous studies on eldercare use largely focused on older adults in general, less attention has been paid to PlwD. Little is also known about the group of PlwD who do not have any eldercare at all and the relationship between the likelihood of having or not having eldercare, the number of years with a dementia diagnosis, and the influence of social demographic factors. In order to be able to offer an integrated life in society for PlwD it is important to understand the structure of care provisions. The objective of this thesis is to investigate (1) what type of eldercare services people with and without dementia aged 65+ use during the last years of life; (2) who the people diagnosed with dementia are that do not use any eldercare at all; and (3) which socio-demographic factors influence the use of eldercare among PlwD. Using multiple health registers, the thesis captured cross-sectional as well as longitudinal data in order to examine the utilization of eldercare among people with and without dementia. The main findings showed that (1) the use of residential care was more common among PlwD compared with those without dementia diagnosis during the last years of life; (2) PlwD with no eldercare were comprised of people in their early stage of dementia, living with partners/married/cohabiting, were more likely men as well as foreign-born; and (3) cohabitation status of PlwD was one of the crucial factors for utilizing eldercare during the last years of life. The thesis identified that a considerable proportion of older adults aged 65+ do not use dementia care even if they have a dementia diagnosis—something that is especially true for people with an older age, women, and living alone. The main argument drawn from this thesis is that not only the diagnosis of dementia but the years living with the diagnosis was the primary predictor for eldercare utilization among older adults aged 65+ years in Sweden. More explorative research is needed about the care needs of PlwD and policy makers must be aware of the need for individualized homecare services for PlwD in order to provide possibilities for a good life quality for PlwD.

Abstract [sv]

Demens är ett stort folkhälsoproblem. På grund av sjukdomens progressiva karaktär kan personer som lever med demens (plmd) uppleva utmaningar i olika stadier av demenssjukdomen som härrör från funktionella, kognitiva och kommunikativa funktionshinder och därmed vara begränsad i att utföra vardagliga sysslor. Som ett resultat av detta kan plmd ha en ökad efterfrågan på äldreomsorg (inklusive hemtjänst och boende), särskilt under de sista åren av livet. Avhandlingen syftar till att bidra till förståelsen av utnyttjandet av äldreomsorg bland äldre med och utan demens 65+ i Sverige. Även om tidigare studier om användning av äldreomsorg till stor del fokuserat på äldre i allmänhet, har mindre uppmärksamhet ägnats åt plmd. Lite är också känt om gruppen plmd som inte har någon äldreomsorg alls, och sambandet mellan att ha eller inte ha äldreomsorg, antalet år med en demensdiagnos och olika socialdemografiska faktorer. För att erbjuda ett integrerat liv i samhället för PlwD är det viktigt att förstå vårdens struktur och organisation. Avhandlingens forskningsfrågor är att undersöka (1) vilken typ av äldreomsorg personer med och utan demens i åldern 65+ använder under de sista levnadsåren; (2) vilka de personer är som diagnostiserats med demens men som inte har någon äldreomsorg alls; och (3) vilka sociodemografiska faktorer som påverkar användandet av äldreomsorg bland plmd? Med hjälp av flera hälsoregister har såväl tvärsnitts- som longitudinella data använts för att undersöka utnyttjandet av äldreomsorgen bland personer med och utan demens. Huvudfynden visade att (1) användningen av hemtjänstinsatser var vanligare bland plmd jämfört med de utan demensdiagnos, under de sista levnadsåren; (2) plmd utan äldreomsorg bestod av personer som befann sig i ett tidigt skede av demenssjukdomen, som bodde med en partner/gift/sambo, i större utsträckning en man och utrikes födda; och (3) samlevnadsstatusen för plmd var en av de avgörande faktorerna för att utnyttja äldreomsorgen under de sista åren av livet. Avhandlingen identifierade att en betydande andel av äldre 65+ inte utnyttjar äldreomsorgens insatser även om de hade en demensdiagnos, var äldre, och var ensamboende, något som i högre utsträckning gällde för kvinnor jämfört med män. En viktig slutsats från avhandlingens studier är att inte bara en demensdiagnos utan också antalet år med en demens var den primära prediktorn för användandet av äldreomsorgs bland äldre vuxna i åldern 65+ år i Sverige. Mer explorativ forskning behövs om plmd och beslutsfattare bör vara utforma individualiserade hemtjänstinsatser för plmd för att öka möjligheterna för personer med demens att utnyttja anpassade insatser.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2023. p. 105
Series
Linköping Studies in Arts and Sciences, ISSN 0282-9800 ; 856
Keywords
Eldercare, Long-term care, Dementia, Social care policy, People living with dementia, Older adults, Äldreomsorg, Långtidsvård, Demens, Socialvårdspolitik, Personer som lever med demens, Äldre
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-192746 (URN)10.3384/9789180751872 (DOI)9789180751865 (ISBN)9789180751872 (ISBN)
Public defence
2023-05-08, K4, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (English)
Opponent
Supervisors
Available from: 2023-03-29 Created: 2023-03-29 Last updated: 2023-03-30Bibliographically approved

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Rahman, AtiqurHydén, Lars-ChristerKelfve, Susanne

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