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Family caregiving, a long and winding road. Aspects on burden and life satisfaction among caregivers from the general population study 'Good Aging in Skåne' and effects of psychosocial intervention

Dahlrup, Beth LU (2015) In Lund University, Faculty of Medicine Doctoral Dissertation Series 2015:121.
Abstract (Swedish)
Popular Abstract in Swedish

Anhöriga – aspekter på börda, livstillfredsställelse och effekter av stöd.

Med en ökande befolkning av äldre och en samtidig minskning av möjligheter till hjälpinsatser inom såväl kommunalt som landstingsstyrd vård och omsorg, kommer många av oss ta hand om äldre familjemedlemmar, släktingar och vänner.

Hur kommer detta att påverka oss?

Ungefär 20 % av den vuxna befolkningen i Sverige identifierar sig som anhöriga. Detta framkommer av en enkät bland 15000 personer över 18 år som gjordes av Socialstyrelsen 2012 på uppdrag av Socialdepartementet (National Board of Health and Welfare, 2012 a). Den fråga som ställdes var: ”Vårdar, hjälper eller stödjer du regelbundet... (More)
Popular Abstract in Swedish

Anhöriga – aspekter på börda, livstillfredsställelse och effekter av stöd.

Med en ökande befolkning av äldre och en samtidig minskning av möjligheter till hjälpinsatser inom såväl kommunalt som landstingsstyrd vård och omsorg, kommer många av oss ta hand om äldre familjemedlemmar, släktingar och vänner.

Hur kommer detta att påverka oss?

Ungefär 20 % av den vuxna befolkningen i Sverige identifierar sig som anhöriga. Detta framkommer av en enkät bland 15000 personer över 18 år som gjordes av Socialstyrelsen 2012 på uppdrag av Socialdepartementet (National Board of Health and Welfare, 2012 a). Den fråga som ställdes var: ”Vårdar, hjälper eller stödjer du regelbundet någon eller några personer med vardagliga sysslor, personlig omsorg eller annat stöd som behövs på grund av sjukdom, funktionsnedsättning eller hög ålder?” Resultaten av denna undersökning visar att den största gruppen anhöriga finns bland medelålders, men också gruppen äldre makar och partners utgör en stor grupp. Många är såldes i förvärvsaktiv ålder och delar sin tid mellan arbete, familjeliv och att vårda och hjälpa en anhörig. Många är också i hög ålder med egna hälsoproblem. Risken för att anhörigas hälsa påverkas till det sämre är välkänd men det finns också positiva aspekter i att vårda åtminstone om anhörigas börda inte upplevs vara hög.

Det övergripande målet för avhandlingen var att studera anhörigas börda och hur denna påverkar livskvalitet genom att för det första; identifiera börda och dess påverkan på livskvalitet och för det andra beskriva hur bördan kan reduceras. Studierna bygger på datainsamling från Gott Åldrande i Skåne (GÅS) och Malmö Interventionsstudie för Närstående (anhöriga) med Demens, (MIND).

Den första studien är en tvärsnittstudie av GÅS. Målet var dels att beskriva karakteristika hos 369 anhöriga och 2233 icke anhöriga, och att studera skillnaderna i hälsorelaterad livskvalitet och livstillfredsställelse mellan anhöriga och icke-anhöriga och mellan anhöriga uppdelade utifrån upplevelse av hög eller låg börda och där icke-anhöriga utgjorde kontrollgrupp. De som var anhöriga i GÅS identifierades utifrån frågan; ”Hjälper Du någon närstående med nedsatt hälsa i eller utanför hemmet?”. Resultaten visar att de anhöriga var yngre, hade fler utbildningsår och oftare levde i parförhållande jämfört med icke-anhöriga. Mer än 30 % (n=133) av de anhöriga uppgav hög börda. En jämförelse mellan anhöriggrupperna visade att de anhöriga som uppgav hög börda också uppvisade lägre hälsorelaterad livskvalitet och lägre livstillfredsställelse. Ett annat fynd var att anhöriga som uppgav låg börda rapporterade en bättre hälsorelaterad livskvalitet och livstillfredsställelse än icke-anhöriga (Dahlrup et al, 2015). Att uppmärksamma börda och erbjuda stöd och hjälp innan bördan övergår till att påverka den anhöriges livskvalitet är viktigt för samtlig personal inom vård och omsorg.

Den andra studien är också den en tvärsnittsstudie baserad på GÅS och där deltagarna delats in i olika diagnosgrupper. De GÅS-deltagare (n=350), som angav att de hade stöd och hjälp genom att besvara följande fråga; ”Får du på grund av nedsatt hälsa hjälp med skötsel av hemmet och andra vardagssysslor eller personlig omvårdnad från närstående (anhöriga, vänner, grannar)?” där undersökte vi också data från de anhöriga (n=343). I denna studie ville vi undersöka om det fanns någon skillnad i upplevelsen av börda mellan anhöriga utifrån diagnosen hos den person som man vårdade. Vi studerade anhörigas självrapporterade fysiska och psykiska hälsa, insatser och tidsåtgång för såväl formell som informell vård samt upplevelser av börda. För att undersöka börda använde vi Caregiver Burden Scale (CBS) (Elmståhl, S., Malmberg, B., Annerstedt, L., 1996) som består av 22 frågor inom 5 olika områden. Medelvärdet i de fem olika områdena anger den totala bördan och denna indelades i hög och låg total börda. Den högsta totala bördan fann vi hos anhöriga till personer med diagnoserna demens och depression och bland dessa grupper fann vi också den högsta bördan i 4 av de 5 olika områdena av CBS. Bördan hos anhöriga till personer med demenssjukdom är väl studerat vilket inte är fallet bland anhöriga till äldre personer med depression. Det är viktigt för personal inom vård och omsorg att uppmärksamma risk för börda också i denna grupp av anhöriga och erbjuda adekvata former av stöd.

I den tredje studien ville vi undersöka hur anhöriga till personer med demenssjukdom skattade intellektuella, emotionella och motoriska symptom hos personen med demenssjukdom före och efter en intervention riktad till anhöriga bestående av information, undervisning och stödgrupper. För symtomskattningen användes Gottfries-Bråne-Steen skalan (GBS-Scale) (Bråne, 1997). För studien använde vi data från MIND och i denna delstudie ingick 129 anhöriga i interventionsgruppen och 133 i kontrollgruppen. Båda grupperna undersöktes vid baseline, dvs. före start av information, undervisning och stödgrupp för interventionsgruppen och sedan var sjätte månad under 18 månader. Anhöriga som deltog i interventionen skattade de intellektuella och emotionella symptomen högre dvs. mer uttalade, efter 6 månader än kontrollgruppen. Denna förändring kvarstod under hela uppföljningsperioden. Tolkningen av resultatet är att anhöriga genom interventionen fick bättre kunskap om sjukdomen och fick lättare att tolka olika symptom som sjukdomsyttringar (Dahlrup et al. 2011). Resultaten kan också förklara tidigare resultat som visat mindre börda, ökad tillfredsställelse och senare inflyttning till särskilda boenden i interventionsgruppen (Andrén, S., 2006, Andrén, S., Elmståhl, S., 2008 b, Andrén, S and Elmståhl, S. 2008 c).

I den fjärde studien var målet att beskriva kostnadseffektiviteten av den psykosociala interventionen som utvecklats i MIND-studien. Vi analyserade resursutnyttjande och kommunens kostnader för insatserna för varje enskild person med demenssjukdom (n=308) och de anhörigas självskattade hälsorelaterade livskvalitet. Interventionsgruppen bestod av 153 anhöriga och kontrollgruppen av 155 anhöriga. Anhöriga var indelade i grupper utifrån relation till den de vårdade. Resultaten visar att kostnaderna för insatser i ordinärt boende var lägre för de som vårdades av sina makar från interventionsgruppen och kostnaderna för särskilt boende var lägre i hela interventionsgruppen oavsett relation. Makar i interventionsgruppen ordnade en tidigare flytt för maken/makan till ett vårdboende jämfört med kontrollgruppen. För de vuxna barnen var det tvärtom, dvs. barnen i interventionsgruppen vårdade sina föräldrar i det ordinära boendet längre än barnen i kontrollgruppen. Anhöriga i interventionsgruppen angav också en högre hälsorelaterad livskvalitet jämfört med kontrollgruppen både då personen vistades i ordinärt boende och efter inflyttning till särskilt boende. Efter inflyttning till särskilt boende uppvisade speciellt gruppen av makar i kontrollgruppen en låg självskattad livskvalitet. Resultatet indikerar att information, undervisning och stödgrupper riktade till anhöriga kan minska risken för en försämrad livskvalitet (Dahlrup et al.2014).

Under de kommande decennierna, förväntas befolkningen öka och den största ökningen väntas bland personer 80 år och äldre (SCB). Detta innebär att behovet av både informell och formell vård kommer att bli stor bland denna del av befolkningen (Szebehaly och Trydegård, 2012). Kommer samhället att kunna möta kraven? Om inte, kommer anhöriga att kunna överbrygga detta gap mellan behov och resurser?

Också inom vård och omsorg är vi beroende av anhöriga för att upprätthålla ett gott liv för äldre i behov av hjälp. Vi måste finna vägar för att hantera framtiden på ett sätt som gynnar alla. Vi har en ganska god kunskap om situationen för anhörigvårdare för personer med demens, men vi måste få mer kunskap även om anhörigvårdare till personer med andra sjukdomstillstånd, särskilt anhöriga till personer med depression. Vi fann att anhörigvårdare till personer med depression upplevt hög belastning men forskning är begränsad trots att depression är ett vanligare tillstånd bland äldre än demens.

Behovet av att "ta hand om vårdaren" och på så sätt förbättra möjligheten för både anhöriga och vårdtagare att leva ett gott liv är en framtida utmaning. Denna utmaning måste mötas på alla möjliga sätt. Några svar föreslås i denna avhandling baseras på resultat från våra studier av anhöriga, deras upplevda börda och effekterna av information, utbildning och psykosocialt stöd. (Less)
Abstract
With an aging population and a reduction in social services provided by the municipality, a huge majority of us will take care of elderly family members, relatives and friends in need of assistance.

How will this affect our lives? Approximately 20% of the adult population in Sweden, mainly middle-aged persons, identify themselves as family caregivers. Many of these caregivers are working and, at the same time, helping and supporting someone within the family or among friends. Among the elderly, taking care of an equally elderly spouse or partner is also common. Although the risk of illness among family caregivers is thoroughly studied and well known, providing help and support seems to have positive aspects, at least as long as... (More)
With an aging population and a reduction in social services provided by the municipality, a huge majority of us will take care of elderly family members, relatives and friends in need of assistance.

How will this affect our lives? Approximately 20% of the adult population in Sweden, mainly middle-aged persons, identify themselves as family caregivers. Many of these caregivers are working and, at the same time, helping and supporting someone within the family or among friends. Among the elderly, taking care of an equally elderly spouse or partner is also common. Although the risk of illness among family caregivers is thoroughly studied and well known, providing help and support seems to have positive aspects, at least as long as the caregivers’ perceived burden is not too high.

The overall aim of the thesis was to study family caregivers’ perceived burden and its consequences on health related quality of life (HRQoL) and life satisfaction (LS) and find ways firstly to identify burden and secondly to describe ways to reduce burden. Data were extracted from two study populations: “Good aging in Skåne” (GÅS) and Malmö INtervention Study on Caregivers to persons with Dementia (MIND).

In Paper I, a cross-sectional study was conducted with data from GÅS, a general population study on persons 60 years and older. The aims were to describe the characteristics of family caregivers (n=369) and non-caregivers (n=2233) and the differences in HRQoL and LS between family caregivers and non-caregivers, and between family caregivers stratified by level of perceived strain using the same non-caregivers as a control group. The family caregivers among the participants in GÅS was identified by the question “Are you helping a family member with impaired health within or outside your household?” The results shows that family caregivers were younger, had more years of formal education, were more often cohabiting and relied less on powerful others than non-caregivers. More than 30% (n=133) of the family caregivers reported high strain. In a three-group comparison including non-caregivers and family caregivers stratified by strain, high strain was associated with lower HRQoL and LS. Furthermore, the study revealed that family caregivers experiencing low strain reported a better LS and HRQoL compared to non-caregivers. These results stress the importance of identifying burden among family caregivers and offering support in order to prevent the occurrence of high burden with its possible implications on the family caregivers LS and HRQoL.

Paper II is also a cross-sectional study but this paper includes data from the family caregivers (n= 343) of persons participating in GÅS, who in connection with the examination reported having informal help. The question asked was: Do you, due to impaired health, get help with household chores or personal care from someone in your family or among your friends or neighbors? After reviewing the medical protocols, five main diagnostic groups emerged among the participants: dementia disorders, heart and lung diseases, stroke, fractures, depression and a group called “other” consisting of a small number of various diagnoses. In this study we wanted to examine the associations between different diagnoses and caregiver burden. The family caregivers’ well-being, the content of and time spent on formal and informal care as well as the perceived burden was examined. A majority rated their health as very good or good but among family caregivers to persons diagnosed with heart and lung diseases and family caregivers to persons in the group “other,” ≥50% rated their health as poor. Pain and discomfort were common among family caregivers in all diagnostic groups except in the groups of stroke and fractures, and anxiety and depression were experienced by between 22- 42% of the family caregivers. A majority of the caregivers gave help with IADL more than once a week, with means ranging between 4.5 days per week in the group providing help to individuals with dementia disorders and 2 days per week within the heart and lung and “other” diagnosis groups. The family caregiver was most commonly a spouse/partner or an adult child and the average hours per week providing help on matters concerning IADL and PADL differed both between the groups and with respect to the relationship between family caregiver and care recipient within the groups. The highest reported time spent on IADL was reported in the diagnostic groups “dementia” and “heart and lung diseases,” in which spouse or partner caregivers provided help approximately 40 hours weekly. The highest reported time spent on PADL was seen among family caregivers in the group “heart and lung diseases,” with 112 hours weekly (md= 28). Caregiver Burden Scale (CBS), a 22-item scale comprising five factors of burden, was used to assess burden. The mean score of the five factors in the CBS comprises a total burden index. The highest percentage of total burden was seen among family caregivers to persons with dementia and family caregivers to persons with depression. Furthermore, family caregivers to persons with dementia and depression stood out in terms of a higher perception of burden in four out of five factors of the CBS. Burden among family caregivers to persons with dementia has been frequently studied but among caregivers to persons with depression the studies are scarce. The risk of high burden among family caregivers to persons with depression needs more attention among professionals in all areas within the healthcare sector.

The aim of Paper III was to examine whether a psychosocial intervention for family caregivers to persons with dementia made any differences when describing symptoms in the person they cared for. In paper III we used data from the longitudinal cohort study MIND, and examined family caregivers’ assessment and rating of symptoms of dementia before and after the family caregivers participated in a psychosocial intervention including education, information and provision of support group. Family caregivers, 129 from the intervention group and 133 among controls, were followed every 6 months during 18 months. Intellectual, emotional and activity of daily living (ADL) functions were rated by the Gottfries-Bråne-Steen-scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18 month follow-up. Our findings suggest that family caregivers who underwent psychosocial intervention achieved better knowledge regarding different symptoms and behaviours and interpreted these as signs of dementia. The findings may also explain earlier findings in studies of the MIND population of less caregiver burden, higher satisfaction and the ability to delay nursing home placement in the intervention group.

In Paper IV, the aims were to describe the cost and cost-effectiveness of the psychosocial intervention developed within the MIND study. We analysed resource use and costs of formal care for persons with dementia (n=308) and their family caregivers (HRQoL) in the intervention group (n=153) and amongst the controls (n=155). The results showed that costs of home help services were lower among spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. The family caregivers in the intervention group reported higher HRQoL both during the time when the person with dementia lived at home and after moving to nursing home. After the person with dementia had moved to nursing home, spouses in the control group reported a lower HRQoL, which can be interpreted as a positive effect of the intervention. (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Associate prof Johansson, Lennarth, Karoliniska institutet, Stockholm University and the National Board of Health and Welfare
organization
publishing date
type
Thesis
publication status
published
subject
keywords
Health economic analysis, intervetion, quality of Life, Life satisfaction, Caregiver burden
in
Lund University, Faculty of Medicine Doctoral Dissertation Series
volume
2015:121
pages
153 pages
publisher
Department of Health Sciences, Lund University
defense location
Jubileumsaulan, Jan Waldenströms gata 5, SUS i Malmö
defense date
2015-11-26 09:00
ISSN
1652-8220
ISBN
978-91-7619-200-9
language
English
LU publication?
yes
id
b485e161-9d31-4411-bea9-b28d7e444a96 (old id 8169476)
date added to LUP
2015-11-20 08:56:05
date last changed
2016-09-19 08:44:46
@phdthesis{b485e161-9d31-4411-bea9-b28d7e444a96,
  abstract     = {With an aging population and a reduction in social services provided by the municipality, a huge majority of us will take care of elderly family members, relatives and friends in need of assistance. <br/><br>
How will this affect our lives? Approximately 20% of the adult population in Sweden, mainly middle-aged persons, identify themselves as family caregivers. Many of these caregivers are working and, at the same time, helping and supporting someone within the family or among friends. Among the elderly, taking care of an equally elderly spouse or partner is also common. Although the risk of illness among family caregivers is thoroughly studied and well known, providing help and support seems to have positive aspects, at least as long as the caregivers’ perceived burden is not too high. <br/><br>
The overall aim of the thesis was to study family caregivers’ perceived burden and its consequences on health related quality of life (HRQoL) and life satisfaction (LS) and find ways firstly to identify burden and secondly to describe ways to reduce burden. Data were extracted from two study populations: “Good aging in Skåne” (GÅS) and Malmö INtervention Study on Caregivers to persons with Dementia (MIND).<br/><br>
In Paper I, a cross-sectional study was conducted with data from GÅS, a general population study on persons 60 years and older. The aims were to describe the characteristics of family caregivers (n=369) and non-caregivers (n=2233) and the differences in HRQoL and LS between family caregivers and non-caregivers, and between family caregivers stratified by level of perceived strain using the same non-caregivers as a control group. The family caregivers among the participants in GÅS was identified by the question “Are you helping a family member with impaired health within or outside your household?” The results shows that family caregivers were younger, had more years of formal education, were more often cohabiting and relied less on powerful others than non-caregivers. More than 30% (n=133) of the family caregivers reported high strain. In a three-group comparison including non-caregivers and family caregivers stratified by strain, high strain was associated with lower HRQoL and LS. Furthermore, the study revealed that family caregivers experiencing low strain reported a better LS and HRQoL compared to non-caregivers. These results stress the importance of identifying burden among family caregivers and offering support in order to prevent the occurrence of high burden with its possible implications on the family caregivers LS and HRQoL. <br/><br>
Paper II is also a cross-sectional study but this paper includes data from the family caregivers (n= 343) of persons participating in GÅS, who in connection with the examination reported having informal help. The question asked was: Do you, due to impaired health, get help with household chores or personal care from someone in your family or among your friends or neighbors? After reviewing the medical protocols, five main diagnostic groups emerged among the participants: dementia disorders, heart and lung diseases, stroke, fractures, depression and a group called “other” consisting of a small number of various diagnoses. In this study we wanted to examine the associations between different diagnoses and caregiver burden. The family caregivers’ well-being, the content of and time spent on formal and informal care as well as the perceived burden was examined. A majority rated their health as very good or good but among family caregivers to persons diagnosed with heart and lung diseases and family caregivers to persons in the group “other,” ≥50% rated their health as poor. Pain and discomfort were common among family caregivers in all diagnostic groups except in the groups of stroke and fractures, and anxiety and depression were experienced by between 22- 42% of the family caregivers. A majority of the caregivers gave help with IADL more than once a week, with means ranging between 4.5 days per week in the group providing help to individuals with dementia disorders and 2 days per week within the heart and lung and “other” diagnosis groups. The family caregiver was most commonly a spouse/partner or an adult child and the average hours per week providing help on matters concerning IADL and PADL differed both between the groups and with respect to the relationship between family caregiver and care recipient within the groups. The highest reported time spent on IADL was reported in the diagnostic groups “dementia” and “heart and lung diseases,” in which spouse or partner caregivers provided help approximately 40 hours weekly. The highest reported time spent on PADL was seen among family caregivers in the group “heart and lung diseases,” with 112 hours weekly (md= 28). Caregiver Burden Scale (CBS), a 22-item scale comprising five factors of burden, was used to assess burden. The mean score of the five factors in the CBS comprises a total burden index. The highest percentage of total burden was seen among family caregivers to persons with dementia and family caregivers to persons with depression. Furthermore, family caregivers to persons with dementia and depression stood out in terms of a higher perception of burden in four out of five factors of the CBS. Burden among family caregivers to persons with dementia has been frequently studied but among caregivers to persons with depression the studies are scarce. The risk of high burden among family caregivers to persons with depression needs more attention among professionals in all areas within the healthcare sector. <br/><br>
The aim of Paper III was to examine whether a psychosocial intervention for family caregivers to persons with dementia made any differences when describing symptoms in the person they cared for. In paper III we used data from the longitudinal cohort study MIND, and examined family caregivers’ assessment and rating of symptoms of dementia before and after the family caregivers participated in a psychosocial intervention including education, information and provision of support group. Family caregivers, 129 from the intervention group and 133 among controls, were followed every 6 months during 18 months. Intellectual, emotional and activity of daily living (ADL) functions were rated by the Gottfries-Bråne-Steen-scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18 month follow-up. Our findings suggest that family caregivers who underwent psychosocial intervention achieved better knowledge regarding different symptoms and behaviours and interpreted these as signs of dementia. The findings may also explain earlier findings in studies of the MIND population of less caregiver burden, higher satisfaction and the ability to delay nursing home placement in the intervention group. <br/><br>
In Paper IV, the aims were to describe the cost and cost-effectiveness of the psychosocial intervention developed within the MIND study. We analysed resource use and costs of formal care for persons with dementia (n=308) and their family caregivers (HRQoL) in the intervention group (n=153) and amongst the controls (n=155). The results showed that costs of home help services were lower among spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. The family caregivers in the intervention group reported higher HRQoL both during the time when the person with dementia lived at home and after moving to nursing home. After the person with dementia had moved to nursing home, spouses in the control group reported a lower HRQoL, which can be interpreted as a positive effect of the intervention.},
  author       = {Dahlrup, Beth},
  isbn         = {978-91-7619-200-9},
  issn         = {1652-8220},
  keyword      = {Health economic analysis,intervetion,quality of Life,Life satisfaction,Caregiver burden},
  language     = {eng},
  pages        = {153},
  publisher    = {Department of Health Sciences, Lund University},
  school       = {Lund University},
  series       = {Lund University, Faculty of Medicine Doctoral Dissertation Series},
  title        = {Family caregiving, a long and winding road. Aspects on burden and life satisfaction among caregivers from the general population study 'Good Aging in Skåne' and effects of psychosocial intervention},
  volume       = {2015:121},
  year         = {2015},
}