Informal care and voluntary assistance A systematic literature review of quantitative and qualitative aspects of assistance to elderly persons in Sweden, Italy, the United Kingdom and Canada

Anita Karp Roya Ebrahimi Alessandra Marengoni Laura Fratiglioni

A report from the Social Council Stockholm 2010

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Rapporen kan laddas ner från Social rådets hemsida http://www.sou.gov.se/socialaradet/rapporter.htm The report can be downloaded from the above website of the Social Council Tryckt av Elanders Sverige AB Stockholm 2010

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Förord

I denna rapport, som är en av många från Sociala rådet, presenteras resultat från en systematisk översikt av litteraturen om informell vård och omsorg och om frivilligt stöd till äldre personer. Detta är ett mycket aktuellt ämne där en sammanställning av kunskapen saknats. Sociala rådet har givit Laura Fratiglioni, professorn i geriatrisk epidemiologi, i uppdrag att göra denna sammanställning. På grund av tidsskäl publiceras den endast på engelska, med en svensk sammanfattning. Sociala rådet riktar ett varmt tack till Laura Fratiglioni och hennes medarbetare för arbetet med rapporten! Kristina Alexanderson Ordförande i Social rådet

Preface The Social Council of the Swedish Ministry of Health and Welfare has asked Laura Fratiglioni, Professor of Geriatric Epidemiology, to conduct this literature review regarding an area of great importance. The Social Council expresses its sincere gratitude Laura Fratiglioni and her coworkers for their work! More information about the Social Council can be found at the website http://www.sou.gov.se/socialaradet Kristina Alexanderson Chair of the Social Council Professor of Social Insurance

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Andra rapporter från Social rådet 1

Alkoholkonsumtion, alkoholproblem och sjukfrånvaro – vilka är sambanden? - En systematisk litteraturöversikt (SOU 2010:47)

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Multipla hälsoproblem bland personer över 60 år - En systematisk litteraturöversikt om förekomst, konsekvenser och vård (SOU 2010:48)

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Vem arbetar efter 65 års ålder? - En statistisk analys (SOU 2010:85)

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Finns det samband mellan samsjuklighet och sjukfrånvaro? - En systematisk litteraturöversikt (SOU 2010:89)

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Massuppsägningar, arbetslöshet och sjuklighet - En rapport om konsekvenser av 1990-talets friställningar för slutenvårdsutnyttjande och risk för förtida död (SOU 2010:102)

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Ålderspension för invandrare från länder utanför OECD-området (SOU 2010:105)

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Läkares sjukskrivningspraxis; en systematisk litteraturöversikt (SOU 2010:X)

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Content

Sociala rådet i korthet ............................................................................... 7 Presentation of the authors..................................................................... 10 Sammanfattning på svenska .................................................................... 13 Summary .................................................................................................... 17 1

Introduction ..................................................................................... 21

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Background....................................................................................... 24 2.1 Definitions and models .....................................................................24 2.2. Comparison of selected countries .................................................27 2.3. Sociodemographic situation ...........................................................30 2.4. Organization of old-age health care .............................................35 2.5. Summary of voluntary organizations ............................................41

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Systematic search of literature: methods ..................................... 53

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Systematic search of literature: results ........................................ 57 4.1. Prevalence of informal care ...........................................................57 4.2. Prevalence of voluntary assistance ...............................................84 4.3. Impact of informal care and voluntary assistance .....................91

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Discussion and conclusions ........................................................... 100

References .............................................................................................. 107 Attachment A Table A1 - A7 ...................................................................... 123

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Sociala rådet i korthet

Sociala rådet i korthet

Sociala rådets uppdrag är, enligt kommittédirektivet, att agera som rådgivare till regeringen på hälso- och sjukvårdsområdet samt i sociala frågor. Sociala rådet ska även förse regeringen med kunskap baserad på svenska och internationella forskningsrön och som är relevant för utformningen av välfärdspolitiken inom Socialdepartementets områden. Dessutom ska Sociala rådet identifiera utvecklingstendenser och viktiga faktorer som har betydelse för välfärdssektorns funktion. Uppdraget omfattar de tre åren 2008-2010. I rådet ingår forskare från olika vetenskapsområden samt generaldirektörerna för Försäkringskassan och Socialstyrelsen. Sociala rådets verksamhet utgörs av flera olika delar, t.ex. regelbundna möten med Socialdepartementets statsråd och politiskt sakkunniga. Sociala rådet ordnar även seminarier och har andra möten med Socialdepartementets tjänstemän, samt arrangerar årligen en konferens för en bredare publik. Sociala rådet har under uppdragsperioden identifierat några områden där det saknas kunskap eller där befintlig kunskap behöver uppdateras eller sammanställas. Sociala rådet har därför initierat ett antal projekt som ska bidra till att fylla vissa kunskapsluckor med innehåll och/eller ge en uppdaterad och översiktlig bild av kunskapsläget. Projekten kommer att redovisas i en serie rapporter, vilken föreliggande rapport tillhör.

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Sociala i korthet

Rapporterna kan laddas ner från Sociala rådets hemsida: http://www.sou.gov.se/socialaradet. Där finns även information om rådet och dess verksamhet.

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Sociala rådet i korthet

I Sociala rådet ingår följande personer: Kristina Alexanderson (ordförande), professor i socialförsäkring, Sektionen för försäkringsmedicin, Karolinska Institutet Lennart Flood (ledamot), professor i ekonometri vid Handelshögskolan, Göteborgs universitet Laura Fratiglioni (ledamot), professor i geriatrisk epidemiologi vid Aging Research Center, Karolinska Institutet/Stockholms universitet Lars-Erik Holm (adjungerad ledamot), generaldirektör och chef för Socialstyrelsen Per Johansson (ledamot), professor i ekonometri vid Uppsala Universitet; Institutet för arbetsmarknadspolitisk utvärdering Adriana Lender (adjungerad ledamot), generaldirektör och chef för Försäkringskassan Olle Lundberg (ledamot), professor i forskning om jämlikhet i hälsa vid Center for Health Equity Studies (CHESS), Karolinska Institutet/Stockholms universitet Clas Rehnberg (ledamot), docent i hälsoekonomi vid Medical Management Centre, Karolinska Institutet.

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Presentation of the authors

Presentation of the authors

Anita Karp has a PhD in medical science and a BA in psychology and sociology. She earned her PhD in 2005 in geriatric epidemiology at the Karolinska Institute. Her dissertation focused on psychosocial factors and risks of dementia in a life course perspective. Anita is currently working as an investigator at the Stockholm Gerontology Center (Äldrecentrum) and Aging Research Center (ARC). Her research focuses on psychosocial factors, dementia, and preventive home visits to elderly persons. Roya Ebrahimi has an MA in medical science in public health from the Karolinska Institute. Her master‟s thesis focused on decision making among young women regarding their family planning. After having completed her master‟s degree Roya worked as a health coordinator in a nonprofit organization for people with physical disabilities in an educational environment in Tanzania. Currently, Roya is an investigator at the Stockholm Gerontology Center (Äldrecentrum) as well as an administrator for their project SpråkSam. SpråkSam seeks to enhance the language and vocational skills of health care staff for elderly persons in Stockholm County. Alessandra Marengoni is a senior researcher at the Department of Medicine and Surgery of the University of Brescia in Italy. She is also a researcher at the Aging Research Center (ARC) in Stockholm. She is a physician specializing in internal medicine and is working in a geriatric unit in northern Italy. In 2008 she defended her thesis on the subject of geriatric epidemiology at the Department of Neurobiology, Care Sciences and Society at the Karolinska Institute. 10

Presentation of the authors

Alessandra's main research area is chronic diseases and ageing. More specifically, she researches in epidemiology, chronic disease, and multimorbidity in older people, multimorbidity, disability and mortality in older people, and chronic diseases and risk of Alzheimer's disease and other dementias. Alessandra is currently participating in an international research group that focuses on multimorbidity. Laura Fratiglioni is a professor of geriatric epidemiology at the Karolinska Institute where she directs the Aging Research Center (ARC) in Stockholm. She is also a project manager at the Stockholm Gerontology Center and a licensed physician with specialized training in both neurology and epidemiology. Her main research field is currently the occurrence of dementia, multimorbidity and disability in older populations and their risk factors. Within these disciplines, she has published numerous scientific articles in renowned journals. Laura leads two longitudinal research projects to investigate the health of the elderly population: the Kungsholmen and SNAC-Kungsholmen projects. She participates in many other projects on dementia, such as the Finnish population study CAIDE and the Swedish twin project Harmony. Laura participated in an expert group which carried out a systematic scientific survey of literature at SBU on dementia. Since 2008 she has also been a member of the Social Council. Laura Fratiglioni can be reached at: [email protected]

Acknowledgments We would like to thank Sven Erik Wånell at Äldrecentrum for discussing, reading, and commenting on our work throughout the entire process. A special posthumous thanks to Kristina Larsson for giving of her valuable time to help and introduce us to the field of informal care, her area of expertise. We also like to thank all the experts in the field of informal care and voluntary assistance in Sweden, Italy, the UK and Canada, who so kindly has given us information through email contacts.

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Presentation of the authors

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Sammanfattning på svenska

Sammanfattning på svenska

Denna rapport är en systematisk genomgång av vetenskaplig litteratur om kvalitativa och kvantitativa aspekter av informell vård och omsorg samt frivilligt stöd. Vi har haft fokus på de äldre personer som mottar vård och omsorg och inte på de anhörigas situation och behov av stöd. Syftet med litteraturstudien var att beskriva förekomsten av informell omsorg och frivilligt stöd till äldre personer i termer av andelen personer som får hjälp av närstående eller frivilliga, vilken tid som ägnas åt denna verksamhet, och vilken typ av tjänster som tillhandahålls. Därutöver undersökte vi om informell vård eller frivilliga insatser har utvärderas när det gäller dess inverkan på de äldres välbefinnande och äldrevårdens organisering. Vi har jämfört förekomsten av informell vård och frivilliga hjälpinsatser riktade till äldre personer i Sverige och Italien, Storbritannien och Kanada. Just dessa länder valdes därför alla har offentliga sjukvårdssystem, men olika modeller när det gäller t.ex. ansvar och finansiering av vården. Vi granskade alla påträffade studier publicerade under 20002009, enligt förutbestämda kriterier, och inkluderade de studier som var relevanta och av tillräckligt hög kvalitet. Slutligen extraherade vi denna information och sammanfattade resultaten enligt fördefinierade kriterier. Sökningar på Internet genomfördes också. Förekomsten av informell vård varierade både inom och mellan länderna. I Sverige hängde den rapporterade variationen främst samman med skillnader i ålder och behov av hjälp med dagliga aktiviteter (ADL). Bland personer 65 år och äldre, fick 18 procent av de ensamboende informell vård. Bland dem som var över 82 år fick 60 procent informell vård. När prevalensen beräknades enbart bland ADL-beroende, var det cirka 60-70 procent som fick informell vård. Enligt den enda italienska studien vi kunde hitta, hade 97 procent av 13

Sammanfattning på svenska

italienarna, 65 år och äldre, tillgång till informell vård. I Storbritannien, fick 80-85 procent av ADL-beroende personer, 65 år och äldre, informell vård. Jämförande studier bekräftade skillnaderna i prevalens mellan länderna, något som stödjer idén om en nord-sydlig gradient i Europa med starkare familjeband i söder och svagare i norr. Endast ett fåtal vetenskapliga artiklar rapporterade prevalenstal i Kanada, men rapporter från Statistics Canada visade att bland personer i åldern 75 år och äldre, fick 38 procent minst en form av informella hjälpinsatser från någon utanför det egna hushållet, och att 75 procent av gruppen äldre med långvariga hälsoproblem fick hjälp, helt eller delvis, från informella källor. Vetenskapliga studier som rapporterar hur vanligt förekommande det är att äldre erhåller hjälp från frivilligorganisationer var ytterst få. Information om hur många som utför frivilligt arbete var lättare att få tag på. Ungefär hälften av befolkningen i Sverige (50 %), Storbritannien (59%) och Kanada (46%) utför någon typ av volontärarbete. Det var emellertid svårt, att uppskatta hur mycket av den totala volymen som riktar sig till att hjälpa äldre personer. När det gäller effekterna på den äldres välbefinnande, fann ett par svenska studier att livskvaliteten för äldre vårdtagare inte påverkades av om vården var informell eller formell, men hjälp av anhörig kunde fördröja flytt till vård- och omsorgsboende. Beträffande eventuella effekter på äldrevårdens organisering framhöll en svensk studie att de egentliga kostnaderna för äldreomsorgen underskattas när kostnaderna för informell vård inte beaktas. Hur man bäst ska beräkna kostnaden för informell vård är emellertid kontroversiellt, eftersom den delvis utförs av personer i arbetsför ålder och delvis av personer som är pensionerade. En svensk rapport som uppskattade kostnaderna för demensvården fann att cirka 9 procent av de totala kostnaderna kunde härledas till informell vård. Men om alla ADL- och tillsynsinsatser som i nuläget utförs av informella vårdare skulle upphöra i ett slag, och behöva ersättas av formell vård, skulle den totala kostnaden för demensvården 14

Sammanfattning på svenska

nästan fördubblas. Enligt en rapport från Storbritannien uppskattades det ekonomiska värdet av informella arbetsinsatser överskrida de totala offentliga utgifterna för National Health Service (NHS). Rapporten visar hur viktig den informella vården är, inte bara för vårdens organisation utan också för det ekonomiska systemet i Storbritannien. I Kanada, uppskattade man att informella vårdares ekonomiska bidrag uppgick till 25- 26 miljarder dollar under 2009. Eftersom antalet äldre ökar och andelen potentiella vårdare per äldre person minskar i Sverige och andra industriländer, kommer de demografiska förändringarna ofrånkomligen att medföra ökande utmaningar för äldreomsorgen. Beslutsfattare i flera länder har riktat uppmärksamheten mot informell vård och frivillig hjälp. Även i Sverige är förekomsten av informell hjälp till äldre med ADL-behov förhållandevis hög och verkar öka i omfattning. Den svenska frivilligsektorn är stark och visar inga tecken på att minska, även om vi i nuläget inte vet stor andel av verksamheten som riktar sig till äldre. Kan något av detta engagemang riktas mot mer stöd till äldre? De finns rapporter om att yngre-äldre hjälper de allra äldsta. Detta kan vara en bra lösning, och frivilligarbete har visat sig ha en positiv inverkan på både välbefinnande och känsla av meningsfullhet hos volontären. Men hur hanterar vi frågor som försäkringar, sekretess och säkerhet för vårdtagaren? Hur medvetna är volontärerna om tidiga tecken på demens, depression, eller felaktig medicinering? Hur kan kontinuiteten i vården upprätthållas? Alla dessa frågor måste studeras med lämpliga metoder och representativa urval av den äldre befolkningen. Vi behöver mer forskning, ett större utbyte av information och erfarenheter, mer initiativ och fokus på dessa frågor. De sociodemografiska förändringarna kommer att fortsätta att utmana oss under detta århundrade, men kan också inspirera till ett nytt sätt att ta hand om alla människor i behov av hjälp, inklusive äldre människor.

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Sammanfattning på svenska

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Summary

Summary

This report is a systematic review of the scientific literature concerning qualitative and quantitative aspects of informal care and voluntary assistance. We examined studies reporting the occurrence of informal care and voluntary assistance to old persons, as well as its impact on the elderly person‟s wellbeing and on the health system organization. We did not cover the vast field of caregiver burden and caregiver support, but kept the focus on persons receiving the care and assistance. The specific aim of the literature review was to quantify the phenomena in terms of the proportion of people assisted by significant others or volunteers, time devoted to this activity, and type of services provided; furthermore, we explored whether informal care or voluntary assistance had been evaluated in terms of its impact on the old person‟s well-being and on the health system organization. The review compared informal care and voluntary assistance for older people in Sweden with Italy, the United Kingdom (UK), and Canada. These particular countries were chosen as all have public care systems but different care models. We reviewed all detected studies on these topics published during 2000–2009, according to predetermined criteria and included the studies that were relevant and of sufficiently high quality. Finally, we extracted the information and summarized the results according to predefined criteria. A search on the Web was carried out, too. The prevalence of informal care performed by significant others varied both within and between countries. In Sweden, the reported variation among the studies was mainly due to differences in age and ADL needs. Among persons aged 65 17

Summary

years and older, 18 per cent of persons living alone received informal care, while 60 per cent of persons over 82 years received informal care. When the prevalence was calculated solely for persons needing help with activities of daily living (ADL), approximately 60–70 per cent of old people living alone received informal care. According to the only Italian study, 97 per cent of Italians older than 64 years of age have access to informal care. In the UK, 80–85 per cent of dependent persons 65 years of age and older receive informal care. Comparative studies confirmed the differences in prevalence between the countries, supporting the idea of a north-south gradient in Europe with stronger family ties in the south and weaker in the north. Peer-reviewed studies reporting prevalence figures in Canada were scarce, but reports from Statistics Canada showed that, among people aged 75 years and older, 38 per cent had received at least one form of unpaid help from someone outside their own household, and that three quarters of them with long-term health problems received help, in part or in total, from informal sources. Scientific studies reporting the prevalence of help received from a voluntary organization were scarce. Data on the prevalence of volunteering were more frequent. Approximately half of the population in Sweden (50%), the UK (59%), and Canada (46%) helped others through a volunteering organization. It was hard, however, to estimate how much of the total volume of volunteering activities was directed towards helping older persons. Concerning the impact on an older person‟s well-being, Swedish studies found that the quality of life of older care recipients was not influenced by care being provided from formal versus informal sources; however, informal care could delay moving to an institution. Regarding potential impact on the health system organization, a Swedish study stated that when the costs of informal care are not taken into account, the costs of old-age care in a society are largely underestimated. How to properly calculate the price of informal care is controversial, however, since the care is partly carried out by people of working age and partly by people 18

Summary

who are retired. A Swedish report estimated the costs of dementia care and found that approximately 9 per cent of total costs were accounted for by informal care. However if all ADL and supervision care currently carried out by informal carers were to cease and be substituted by formal care, the total cost of dementia care would nearly double. In the UK, the economic value of the contribution made by carers was reported to exceed total government spending on the National Health Service (NHS) and several times exceed the spending on social services. The report reveals just how crucial carers are, not only to the health and social care system but also to the economic system in the UK. In Canada, an estimate of the imputed economic contribution of unpaid carers in 2009 equalled CAD 25–26 billion. As the number of elderly people rises and the amount of potential carers per elderly person (the old-age support ratio) decreases in Sweden and other industrialized countries, these demographic changes will indisputably create growing pressure on the resources for elderly care. Looking for new strategies, decision makers in several countries have directed attention to informal care and voluntary assistance. In summary, even in Sweden, traditionally a country with weak family ties, the prevalence of informal care among the oldest old with ADL needs is quite high and appears to be growing. The Swedish voluntary sector is strong and does not show any sign of fading, although our knowledge is still limited regarding how much of that volume is directed to the elderly population. Can some of the engagement be directed towards more assistance for old people? We have reported patterns of younger-old helping older-old adults. This may be a good solution, and volunteering has been shown to have a positive effect on the well-being and meaningfulness of the volunteer. But how can we manage issues such as insurance, confidentiality, and security for the care recipient? How aware are the volunteering helpers of early signs of dementia, depression, or inappropriate medicine intake? What about continuity in care?

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Summary

All these questions need to be studied with the appropriate methodology and representation of the elderly population. We need more research, a greater exchange of information and experience, a greater integration of participants, more initiatives, and focus on these issues. The sociodemographic changes that we are experiencing will continue to challenge us this century but may also inspire a new way of taking care of all people in need of help, including old people.

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Introduction

1

Introduction

Informal care and voluntary assistance directed to elderly persons has attracted increasing attention from policymakers and researchers in the last few years. The major reason for the renewed interest is the demographic change in the number of older people occurring in all countries worldwide. Europe is one of the oldest regions in the world (Demographic yearbook, Council of Europe, 2003), and the number of people over 80 is expected to increase by 50 per cent over the next 15 years (Statistics Sweden, 2010a). Demographic statistics from the European Council predict that declining fertility and growing life expectancy will lead not only to an increased elderly population in Europe, but also to decreasing number of people supporting them. Furthermore, while the proportion of old people in the EU countries will continue to grow, the most remarkable increase will be among the oldest adults. This demographic change generates growing demands for health and social services (Kinsella & Velkoff, 2002) and implies increased pressure and demand on both national and local governments with regards to old-age care. Health expenditure increases with age and is concentrated to the later years of life (WHO, 2010). Recently there has been increasing international debate on guidelines for elderly care including if and how voluntary and informal care can be used in caring for old people. The increased attention on voluntary and informal care is also driven by the current cutback in public old-age care expenditure in almost all European countries (Szebehely, 2006). In Sweden there has been a reduction in service to elderly persons in the last 15 years with the most dramatic change occurring for persons 80 years and older who experienced a decrease in home care from 37 per cent in 1988/89 to 21 per cent in 2002/03 (Larsson, 2006). The 1990s, in particular, have been described as a period in which 21

Introduction

relations between public and voluntary sectors changed as economic conditions hardened. Moreover, a partly new ideological climate has implied a shift towards private and voluntary alternatives (Dahlberg, 2006; Jeppson-Grassman, 2005). The voluntary sector in Sweden has traditionally been thought of as playing a minor role in comparison to other non-Scandinavian countries. Lundström and Svedberg (2003) argue, however, that the international conception of a weak Swedish voluntary sector has no real foundation. They claim that a welfare state of the Scandinavian type seems to influence the composition of the voluntary sector and the structure of its organization rather than diminish its role. According to Lundström and Svedberg (2003), the Swedish voluntary sector, measured in terms of economic importance, membership figures, and popular participation in voluntary activities, is as strong as in other comparable countries, but it is dominated by membership organizations and less concentrated to the core areas of the welfare state (Lundström & Svedberg, 2003). Voluntary organizations in Sweden have not traditionally taken on the role as service and care providers for elderly persons, but are more commonly sports, housing, culture or trade organizations (Svedberg et al, 2010). These proportions may be changing as a result of a shift in the care needs of ageing populations and welfare organization. This report is a systematic review of the scientific studies exploring the quantitative and qualitative aspects of voluntary assistance to old persons, including informal care provided by relatives and friends. We will focus on the perspective of the person who receives care, something that has not often been highlighted in earlier research. Specific aims are to: Quantify the phenomenon in terms of proportion of people assisted by significant others, time devoted to this activity, and type of services provided. Sweden and European and non-European countries will be examined, and Verify whether voluntary assistance has been evaluated in terms of its impact on the elderly person‟s well-being and on the health system organization.

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Introduction

To achieve these aims, this review focuses on informal unpaid care provided by significant others and voluntary organizations to old people in Sweden in comparison with Italy, the United Kingdom (UK), and Canada. These particular countries were chosen as all have a public care system but different models. Sweden represents the “Scandinavian or Nordic model” with its high public investments in elderly care; Italy represents a “Southern” family-based model with limited public responsibilities and formal service provision; the UK represents the “Northern” type of countries with a means-tested model of elderly care, directing public care provision to the economically more dependent people (Lamura et al, 2008). Finally, Canada has a demographic situation similar to Europe with a rapidly ageing population and an organization of old-age care similar to Sweden, and it has a long history of organized volunteerism dating back to the seventeenth century.

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Background

2

Background

2.1 Definitions and models This report focuses on informal care provided by volunteers (voluntary assistance) or by next of kin (informal care). However, informal care and voluntary assistance are by no means equivalent, especially from the carers‟ point of view. Volunteering is regarded as a part of the civil society and based on motivational forces such as the will to contribute to an organization and help other human beings (Swedberg et al, 2010). It is frequently reported to have a positive impact on the well-being of the volunteer (Musick & Wilson, 2003; Morrow-Howell et al, 2003), and even decreasing the risk of illnesses such as dementia (Wang et al, 2002). When it comes to family care, factors such as love, respect, duty, guilt, responsibilities, and the availability of time play crucial roles. In contrast to volunteering, informal care by family members is often considered as a burden or a strain (Schulz & Martire, 2004; Schumacher et al, 2006; Carretero et al, 2009). As a consequence, Sweden and many other countries have developed support services for family carers to relieve their load. The terms care, help, and assistance are customary expressions that are used in everyday language, sometimes interchangeably, to identify voluntary activities. One may claim that care more often concerns medical diagnosis and treatment, but it can also be tied to social needs. The terms help or assistance may often be related to practical chores. It has

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Background

not been easy to find formal definitions of such basic concepts. Informal care is defined as care given to dependent persons, such as a sick or elderly person, outside the framework of organized, paid, professional work (Dictionary of sociology, 2010). Informal care is usually provided by family members, friends, and neighbours who give regular and sustained assistance to a person requiring support, usually on an unpaid basis. The term family care refers to the same type of care but is restricted to care given by family members. Informal care is reported in the literature as including both emotional help (keeping company with or keeping an eye on) as well as more hands-on help (personal services, practical assistance, paperwork, cleaning) (Jegermalm, 2006). The term voluntary work has been defined as unpaid tasks that are performed within the framework of an organization (Svedberg et al, 2010). Volunteering has been described as the unpaid time people give to help an organization or an individual to whom they are not related. It is generally considered an altruistic activity, intended to promote or improve human quality of life (Volunteering England, 2009). Volunteers fall somewhere between the formal, paid work of the statutory and independent sectors and the informal care offered by family and friends (Hoad, 2002). Not only do definitions of concepts vary among studies, operationalizations of the concepts differ greatly as well. Some studies describe in detail the help provided by the carer (e.g. mobility help, organizing support, financial management, domestic tasks, psychological support); others define it more loosely as to “look after, or give any help or support to family members, neighbours, or others who are sick, disabled, or elderly.” Common tools for defining the need for help are scales assessing the activities of daily living (ADL), the instrumental activities of daily living (IADL), and personal ADL (PADL). ADL are general everyday tasks required for self-care and independent living. One commonly used scale is the Katz ADL scale (Katz, 1983) which includes activities such as eating, toileting, bathing, walking, and dressing. IADL 25

Background

refer to activities such as shopping, telephone use, cooking, housekeeping, medication, and transportation (Burns et al, 2004). PADL refers only to personal ADL needs such as help with bathing and dressing. Finally, in some studies, the definition of informal care includes the requirement of a minimum time devoted by the carer to help a disabled person (for example, at least 20 hours of informal care per week). In other studies the care needs to be regular in order to be defined as informal care (e.g. at least one visit a week). With these shifting definitions and operationalizations, comparison of prevalence figures is of course challenging. In summary, informal care and voluntary work may be generally described as unpaid (at least by regular salaries) activities carried out by citizens in a civil society. The very essence of these activities is that they are voluntary and not contractual. In a study with a qualitative approach, Hoad (2002) pointed out that expectations varied regarding the roles of participants in the care of old people because of the unclear boundaries between paid and informal care. The ways in which these boundaries are established and maintained depend not only on legal and policy constraints at a national or state level, but also on negotiation between organizations and individuals at a local level. Several theoretical models have been proposed in the literature regarding the relation between formal and informal care (Larsson, 2004), or voluntary assistance. They are briefly summarized below. The substitution model claims that formal care substitutes for informal care, implying a corresponding decrease in informal care when formal care is provided (Greene, 1983). It may also work reciprocally, so that the civil society constitutes a resource that can fill gaps caused by cutbacks in the formal care system (Jegermalm & Jeppson Grassman, 2009). In substitution theory the relation between formal and informal care is seen as a zero sum game in which a strong welfare state may “crowd out” voluntary work (Dahlberg, 2006). The compensatory model also takes into account the individual‟s preference for type of help which is regarded as 26

Background

normatively defined and embedded in the cultural values of a society (Cantor, 1979, 1991). The task specificity model suggests that people receive different but complementary kinds of care from formal and informal providers, and that the structure of the task is described as more important than the elderly persons‟ preferences or the availability of informal carers (Litwak, 1985). The complementary model proposes that formal care has both compensatory and supplementary functions, and that the formal care system supplements the informal when the needs of elderly persons exceed the resources of the informal care system (Attias-Donfut &Wolff, 2000). According to this theory different actors have different strengths and weaknesses which make them suitable to carry out different tasks.

2.2. Comparison of selected countries Sweden, Italy, the UK, and Canada have public care systems, but they have different types of care models. Sundström and coauthors (2007) proposed a model adapted from Millar and Warman (1996) (Tables 1a and 1b), which groups European countries along three regions: Nordic, Northern, and Southern with the intention of describing formal and informal old-age care. In this review, Sweden represents the “Scandinavian or Nordic model” with its high public investments in elderly care, whereas Italy represents a “Southern” family-based model with limited public responsibilities and formal service provision. Italy is also interesting since it has the largest proportion (18.2%) of people over 65 of all European countries. The UK represents the “Northern” type of country where voluntary organizations have played a major role in assisting elderly persons. The UK has a means-tested model of elderly care, directing public care provision to the economically more dependent elderly

27

Background

population, which gives a larger role to informal care providers (Lamura et al, 2008). Finally, Canada has a demographic situation similar to Europe, with a rapidly ageing population and an organization of old-age care similar to Sweden. In Canada, the voluntary sector plays an important role in the care of old people, with over 161,000 nonprofit and voluntary organizations operating in the society, and over 17,700 of them are serving the older population. Additionally, Canada has a long history of organized volunteerism dating back to the seventeenth century.

28

Background

Table 1a. Care of the elderly people in different European regions: Variations in dimensions of family care politics and obligations (Sundström et al, 2007) European regions

Family Care Policy

Level of Responsibility

Official Responsibility

Financing

Nordic

Yes, Explicit

Municipality

State

Local Tax

Northen

Yes, Implicit

National

Shared

Insurance

Southern

No, Implicit

Individual

Family

Individual

Table 1b. Care of the elderly people in different European countries: Variation in responsibility (Sundström et al, 2007) Legal obligation for family

No legal obligation

Extended family

Offspring

Extended family

Offspring

Italy

Austria

Irland

Sweden

Portugal

Belgium

Great Britain

Denmark

Spain

France

Finland

Germany

Holland

Greece

Norway

This chapter summarizes the demographic situation and the management and organization of health and social care for older adults in the four selected countries. When summarizing and comparing the patterns of voluntary and informal care for elderly people, one must bear in mind that traditions and legislation undergo change. Italy, for example, has shifted over the last decade from the extended family-based type of care towards relying heavily on informal care, but less so on family carers (Hoffmann & Rodriegues, 2010).

29

Background

2.3. Sociodemographic situation Sweden. In October 2009, the Swedish population reached 9.3 million people (Statistics Sweden, 2010b). The share of older adults has increased and will continue to increase at a fast rate as a result of increased life expectancy. According to the United Nations Department of Economic and Social Affairs Population Division the proportion of people aged 60 years and older was 25 per cent in 2009 and will increase to 30 per cent by 2050 (Figure 1a). The share of persons 80 years and older is expected to increase as well from 22 per cent in 2009 to 31 per cent in 2050 (Figure 1b).

Italy. At the beginning of 2009, the total resident population in Italy was just over 60 million according to the Italian Institute of Statistics (ISTAT, 2010). Italy is one of the European countries with the highest percentage of adults over 60 years of age, accounting for 26 per cent in 2009. This is expected to increase dramatically to 39 per cent by 2050 (UN, 2009). The same type of scenario is expected for those aged 80 and older. In 2009, their share of the population reached 22 per cent and is expected to reach 34 per cent by 2050 (Figure 1b). Italy is experiencing a social transformation characterized by a decline in the cohabitation of generations and an increasing female participation in the labour market, which prevents many women from providing informal care as traditionally done in the past. This trend is expected to continue in the future because of the probable upward shift in the minimum retirement age limit, which will keep Italians in the labour market longer (Vergani, 2007).

30

31

Source: http://www.un.org/esa/population/publications/ageing/ageing2009.htm

Figure 1. A. Percentage of people aged 60+ in Sweden, Italy, the UK, and Canada in 2009 and projected to 2050; B. Percentage of people aged 80+ in Sweden, Italy, the UK, and Canada in 2009 and projected to 2050. Background

Background

United Kingdom. In 2008 the UK had a population of 61.4 million people. The elderly population has increased over the past 35 years (Office for National Statistics, 2008).. In 2009, the share that was older than 60 years of age was 22 per cent, and that is expected to increase by 2050 to 29 per cent. The same scenario is envisioned for persons 80 years and older; that proportion will increase from 21 per cent in 2009 to 30 per cent by 2050.

Canada. According to 2009 estimates, Canada has a population of 33.8 million persons (Statistics Canada, 2009a). Older people represent one of the fastest growing groups in the society due to low fertility rates, longer life expectancy, and the effects of the baby boom generation reaching retirement age (Turcotte & Schellenberg, 2006). The number of people in Canada aged 60 and older is projected to increase from 20 per cent in 2009 to 32 per cent by 2050. The number of people aged 80 and older has grown rapidly over the last two decades. In 2009, the share of people older than 80 years was 20 per cent and will increase to 30 per cent by 2050 (UN, 2009). In conclusion, all four countries have similar demographic distributions and all are expected to increase their proportion of people older than 60 and 80 years of age by 2050. Italy will have the largest increase in percentage of persons aged 80 and older in comparison with the three other countries. All four countries have very similar life expectancy: at least 20 years at the age of 60, 2005–2010 (Figure 2).

32

Background

Figure 2. Life expectancy at age of 60 in the world and in the four selected countries. Source: http://www.un.org/esa/population/publications/ageing/ageing2009.htm

The old-age support ratio is an important indicator of demographic ageing as well as of potential carers. The ratio is calculated as the number of persons aged 15–64 over persons aged 65 years and older. It is an indicator also of the degree of dependency of older persons on potential workers. The level of the old-age support ratio has important implications for the solvency of social security systems (pensions and public health), as well as for the size of private transfers from the working-age population to older family members. As seen from Figure 3, the four countries have differing old-age support ratios, but all will have a decreasing number of potential workers in relation to the number of people aged 65 and older. By 2050, Italy is predicted to be facing the greatest challenge, followed by Canada and Sweden. Of the four countries, Canada is predicted to undergo the greatest transformation in support ratio between 2009 and 2050. 33

Background

Figure 3. Old-age support ratio in the world and in the four selected countries. Source: http://www.un.org/esa/population/publications/ageing/ageing2009.htm

Another important prerequisite of the availability of informal care is represented by the number of persons that have enough time to take on this responsibility. The balance between employment and informal care of family is crucial. Traditionally, women have provided most of the informal care. According to Eurostat, the European Statistics for 2010, the employment rates of women differ substantially in Europe. In 2009, women (15–65 years of age) were employed at a rate of 46.4 per cent in Italy, 65 per cent in the UK, and 70.2 per cent in Sweden. In Canada, according to the Canadian government department, Human Resources and Skills Development (2010), the female employment rate was 58.3 per cent in 2009 (Figure 4).

34

Background

Figure 4. Employment rates in Sweden, Italy, the UK, and Canada, year 2009. Sources: http://epp.eurostat.ec.europa.eu/portal/page/portal/eurostat/home/ http://www4.hrsdc.gc.ca/[email protected]?iid=13#M_2

2.4. Organization of old-age health care Sweden According to the Social Services Act (1982), elderly people have the right to receive public services and help at all stages of life. All who need help to support themselves in their dayto-day existence have the right to claim assistance if their needs cannot be met in any other way. In 1983, the Health and Medical Services Act came into effect. In accordance with this act, health care and medical services aim to maintain a good standard of health among the entire population and to provide care on equal terms for all (Socialstyrelsen, 2004). 35

Background

The voluntary element is fundamental to the Swedish view of family care. According to the National Board of Health and Welfare, the informal care of old people and people with long-term illness or disabilities is important, but must be voluntary both from the perspective of the carers and the recipients. As of 1 July 2009 it is obligatory for municipalities to provide assistance to relatives in compliance with a modification of the Social Services Act. Local health and social services must provide individually tailored support to relatives and work to respect and cooperate with relatives (Socialstyrelsen, 2010). According to the National Board of Health and Welfare, approximately 15 per cent of the population 65 years or older receives formal elderly care, home care, or assistance through a health care institution. The majority (37%) of the recipients of old-age care are 80 years and older (Socialstyrelsen, 2009). The number of places in health care institutions, or särskilda boenden, has decreased significantly. According to the National Board of Health and Welfare, approximately 24,000 places in health care institutions have disappeared since 2000, which corresponds to a 20 per cent decrease. Instead it has become more common for old people to receive assistance from informal sources such as family and relatives (Socialstyrelsen, 2009).

Italy The Italian National Health Service (NHS) is organized in 21 regional health systems that are also autonomous economically. They have to guarantee to all citizens at least the essential services defined by the national Ministry of Health. According to this system, free health care is limited to primary care by general practitioners and to hospital acute care, while long term care costs in residential and nursing homes are only partially covered (the patient has to pay the „“social” part‟, since the NHS only covers the “„health” 36

Background

component‟ of costs). Furthermore, any person in Italy who is unable to live independently has the constitutional right to receive public support, but also the legal right to ask for financial support from relatives. The first right is creating an increasing financial problem for municipalities, which are obliged to cover the difference between fees for residential care and the incomes of the increasing number of elderly people who are resorting to it. The NHS reform was followed by the Objective: Ageing Persons project (the National Plan for Welfare). The objective was to better coordinate medical and social services to ensure their integration within the home care services system. Related services are intended to promote the well-being of elderly people and help them maintain their autonomy (Alzheimer Europe, 2009). Some community services are offered, such as a general practitioner (GP), home care service (SAD), medical home care called programmed home care assistance (ADP) for patients who are unable go to their GP, and integrated home care assistance (ADI) for terminal patients or those affected by severe pathologies. In Italy the home-help category includes people who do the housework and help with personal care (hygiene, getting up and going to bed, dressing, eating, and bathing). Official statistics from an ISTAT report (Gori & Lamura, 2009) indicate that the percentage of elderly people who received publicly financed help in 2008 varied from 2.1 per cent of those aged 65–69 to 23.8 of those aged 80 and older (Lamura & Principi, 2009). According to the same report, Italy is the European country with the lowest number of elderly persons living in residential facilities or cared for by territorial and home services. Residential care in Italy includes the Residenze Sanitarie Assistite (RSA) for non-self-sufficient older people and residential facilities for self-sufficient or partially self-sufficient older 37

Background

people. In 1999 there were 2.7 per cent institutionalized elderly persons in Italy. In the last decades the percentages of older Italians who were institutionalized did not vary substantially; in particular, from 1971 to 2001, this percentage was around 2 per cent (in 2001 it was 2.1%) (Pesaresi & Brizioli, 2009).

United Kingdom Formal care is provided by the National Health Service (NHS), municipalities, private companies, and voluntary organizations. The National Health Service Act of 1946 came into effect in 1948, and the NHS has grown to become the world‟s largest publicly funded health service. The system was built on the idea that good health care should be available to all, regardless of wealth. The NHS remains free at the point of use for anyone who is resident in the UK with the exception of charges for some prescriptions and optical and dental services. Although funded centrally by national taxation, NHS services in England, Northern Ireland, Scotland, and Wales are managed separately. While some differences have emerged between these systems in recent years, they remain similar in most respects (National Health Services, 2009). Old-age care in the home (home care) generally includes help with personal tasks such as bathing and washing, getting up and going to bed, shopping, and managing finances. Help is given two or three times a day or around the clock if necessary. Home helpers provide assistance with general domestic tasks including cleaning and cooking and maintaining hygiene in the home. According to national statistics, approximately 6 per cent of persons 65 years of age and older receive home care. The average number of hours of home care per household per week has increased from 5.8 to 11.6 between 1998 and 2007 (National statistics & NHS, 2008).

38

Background

Of people who are 65 years of age and older, 3.5 per cent live in residential care houses (e.g. servicehus) or nursing homes (e.g. sjukhem), and that proportion increases with age from 3 per cent of the 65–69-year-olds to 19 per cent of persons older than 85 years of age (Nolan et al, 2004).

Canada In Canada, the health care system is regulated by the Canadian Health Act adopted in 1984. The Act specifies and regulates the conditions and criteria which the Provincial and Territorial Health Insurance Programme must conform to in order to receive federal transfer payments under Canada Health Transfer. There are five conditions listed in the act: public administration, accessibility, comprehensiveness, universality, and portability (Canadian Nurses Association, 2000). According to the Canadian Health Act, all residents of Canada should have the same access to health care. The government is responsible for legislation, provides financial grants, and is responsible for public health work and health research. Old-age care is administered by combining somatic long-term care and home care financed by the provinces with federal grants and tax supplements. Health care is public and is provided according to need and not ability to pay (Health Canada, 2003). The ten provinces and three territories in Canada are responsible for operating health services. A patient may receive a referral for specific, somatic long-term care or home care. The first type of medical care is largely paid for by the provinces or the territories, but the costs of food and lodging are charged to the patient. Referral to home care can be made by doctors, hospitals, and municipal bodies through care assessment. In three of the provinces (Anitoba, Ontario, and Québec) the individual does not pay for home care. Home care is formal health care received at home where the cost 39

Background

wholly or partly is financed by the government. Home care might, for example, include nursing, help with bathing or showering, household work, and meal delivery. The National Population Survey estimated that in 1994/1995 over 520,000 Canadians aged 18 years or older received home care. In 1996/1997, the number who received the same type of care had increased to almost over 540,000 (2.5% of the population). The majority of the people receiving home care were old and chronically ill (Health Canada, 1999). According to the 2001 census, 7 per cent of the Canadian population aged 65 years and older lives in an institution (primary health-care institutions such as nursing homes and hospitals). With increasing age, institutional residency rises from 2 per cent for people aged 65–74 to 32 per cent for those aged 85 and older. However, the rate of institutionalization of old people has declined since the early 1980s. The decline has been particularly significant among those aged 85 and older. In 2001, 32 per cent of them were living in institutions, down from 38 per cent in 1981. Women aged 85 years and older were significantly more likely than men in the same age range to live in institutions, due to longer life expectancy. Across all three age groups, a greater proportion lived with a spouse in 2001 than previously. Men‟s increasing life expectancy is one factor which has contributed to this increase (Turcotte & Schellenberg, 2006). According to Statistics Canada, at the end of 2007 there were 3.85 places per 1,000 inhabitants 65 years and older in retirement homes, nursing homes, and other special housing for somatic care. Private health care, approved and funded by the provinces/territories, accounted for 42 per cent of these places (Statistics Canada, 2009b).

40

Background

2.5. Summary of voluntary organizations Sweden The size of the Swedish voluntary sector is not smaller than that of other comparable countries (Lundström & Svedberg, 2003). In fact, the number of voluntary organizations is large (150,009–200,000) for a country with 9.3 million inhabitants (Svedberg et al, 2010). In 2002, data from Statistics Sweden showed that 24,000 organizations had an activity extensive enough to motivate hiring their own employees (Von Essen et al, 2010). Moreover, Swedish engagement is stable over time according to a recent report from Ersta Sköndal (Svedberg et al, 2010). Many voluntary organizations in the social area can be characterized as a we-for-us type of organization (e.g. patient or retirement organizations), which are more directed towards self-help or support groups of people in similar situations. At the same time, there is also the more traditional me-for-you type of humanitarian organization such as the Red Cross and the Salvation Army. The boundaries between these types of organizations are, however, not always clear (Jeppson Grassman, 2005). Retirement organizations in Sweden, for example, contribute to prevention of disease by working actively with health maintenance in the elderly population (Schön & Wånell, 2006). The voluntary sector working to help older people could roughly be divided into four main groups (Table 2).

41

Background

Table 2. Major voluntary organisations in Sweden and their activities concerning care of the elderly people

Nationwide voluntary organizations

Religious organizations

Retirement organizations

Local voluntary organizations

Umbrella voluntary organizations

Red Cross

Salvation Army Home visits to lonely people; help with physical, psychological, and spiritual needs

Pensionärernas Riksorganisation

Föreningen Frivillig Väntjänst

Volontärbyrån

Visiting service; memory training; excursions and other activities; emergency telephone service; volunteering at hospitals and institutions; family carer support

(PRO)

Visiting service such as company to the doctor; social visiting; reading; walking and other activities

Ersta diakoni Social visiting; walking; company to concerts; theatre; museums; helping out in hospice clinic or at Alzheimer Café; a meeting place for persons with dementia and their relatives

Contributions to prevent disease; spreading knowledge of healthy lifestyle; social activities

Sveriges Pensionärsförbu nd (SPF) Promotion of health; quality of life and independence; creating networks

Church of Sweden Support to people losing a family member; visiting service; excursions; social meeting place

.

42

Syriska föreningen Visiting service; physical activities; information about elderly care, social services, healthy lifestyles; excursions to museums; institutions; social activities

Mediating volunteering assignments all over Sweden; educating voluntary organizations in volunteer coordination

Background

Voluntary contribution to old-age care in Sweden consists commonly of a visiting service, with the purpose of mitigating loneliness among older persons living alone. Another typical voluntary task is to accompany an old person to activities and medical appointments. It is common that old people help those that are older and more in need of help than themselves (Jeppson Grassman, 2005).

Italy Several voluntary organizations are currently operating in Italy. Some of them are devoted to different types of assistance, whereas others are specifically organized to help elderly people. The number of all volunteers associations in Italy has grown 152 per cent, from 8,343 to 21,021 units from 1995 to 2003 (ISTAT 2005). There are currently two main national organizations devoting a large part of their activities towards assisting elderly persons Italian Association of Public Assistance Groups (ANPAS), www.anpas.org, was founded in 1904 and is the largest Italian lay association of volunteers. It includes 800 associations, spread nationally. At the local, national, and international levels, ANPAS represents the widespread and deeply rooted movement of public assistance associations and deals with the protection, assistance, promotion, and coordination of voluntary work with the ultimate goal of building up a more equal society. It promotes meetings and initiatives, develops fund-raising, spreads professionalism, and supports the formation and preparation of its own executives and volunteers. Equality, freedom, brotherhood, and democracy are the source values that inspire ANPAS and the whole history of the movement. Public assistances groups have always served everyone in need without any conditions on the offered 43

Background

assistance, and they are open to everyone. Several associations affiliated with ANPAS are involved in assisting old people with varying programmes and projects in the different Italian regions. The public assistance member groups of ANPAS are active in the following fields: emergency medical rescue, ambulance services, blood donations, civil protection/disaster relief, social and health care programmes, volunteer civic service, social interaction programmes, cremation services, and the promotion of solidarity. Elderly Emergency Service (S.E.A. Italy), www.seaitalia.org, is a national federation of voluntary associations with a Christian inspiration, offering home first aid to old people in need. SEA operates in Piedmont and Lombardy. SEA intervenes in real time to emergency calls from old people, the social services, or other people such as relatives or next-door neighbours. The services offered are limited in time to the situation faced in single cases of emergency. Between 1988 and 2008, SEA offered 301,000 domicile services and provided assistance to 29,850 old people through about 1,350 volunteers. SEA uses 25 cars in its services to elderly people. The specific activities include the following services: Home assistance after hospital: coordination between hospitals, social services, specialized personnel to assist elderly persons after a hospital stay. Security project: telephony service for free calls, 24 hours a day. Dispatch riders: a service to relieve relatives assisting an elderly person for a whole afternoon, a Saturday, or a Sunday. Friend alarm: free transportation for elderly persons in situations of crisis. Visits and therapies: accompanying elderly people to hospitals, offices, therapy, and practices; helping elderly 44

Background

people spend free time and in social relations, such as visits to relatives and walks in green areas. Social telephony: telephone calls guaranteed several times per week as needed and planned. The fifth grandfather: project between a family and an older person or an older couple. A time for soul: driving persons who wish to participate to Mass or other religious ceremonies. Health project: personal hygiene, pedicure service, hair washing. Cultural services: involving old people in cultural activities. Collaboration at home and purchase of medicines: helping do light housework and purchasing medicines, especially when shops and pharmacies are far away.

United Kingdom According to the UK National Council for Voluntary Organizations, (2010a), the number of voluntary organizations in 2007/2008 was 171,074 with a total income of GBP 35.5 billion and a total expenditure of GBP 32.8 billion. There were 1.6 million people employed in civil society organizations in 2007/08, of which 668,000 were working in voluntary organizations. An analysis made by the National Council of Voluntary Organizations revealed that the sector‟s workforce has increased significantly due to its role in public service delivery, and that around 1.2 million full-time workers would be needed to replace the volunteers at a cost of GBP 21.5 billion. In fact, there are 20.4 million adults who formally volunteer every year in the UK, and a high proportion of them are highly qualified women. National Council for Voluntary Organisations (NCVO). This is the largest umbrella body for the voluntary and community sector in England with sister councils in Scotland, Wales, and Northern Ireland. The aim is to give a shared voice to voluntary organizations and to help them achieve 45

Background

high standards of practice and effectiveness in all areas of their work. NCVO is also a lobbying organization and represents the views of its members and the wider voluntary sector to government, the European Union, and other bodies. Members also carry out research into, and analysis of, the voluntary sector. They campaign on issues such as the role of voluntary organizations the delivery of public service and the future of local government. They have several specialist teams that provide information, advice, and support to others working in or with the voluntary sector. These teams produce publications including reports, toolkits, briefing papers, and books. They run networking and training events and manage and facilitate a wide range of forums and networks for staff and volunteers working in specific areas such as policy, planning, membership, publishing, and public service delivery. Finally, they provide direct support to organizations through a consultancy service. NCVO has over 8,400 member organizations and a staff of over 241,000 (NCVO, 2010b). There are several charitable and voluntary organizations in the UK that focus especially on the needs of older people and/or carers. Among them, Age Concern, Help the Aged, and the British Red Cross are the most well-known organizations. Age Concern and Help the Aged have recently (2009) united to create a new organization, Age UK (Nolan et al, 2004). Age UK. In 2008/9 the organization had an income of GBP 91.2 million. The income derives from donations, gifts, legacies, retail, commercial trading, and other areas. The aim of the organization is to improve the life quality of elderly people through information and advice, campaigns, products, training, and research. Among the services provided by the organization to old people, the most relevant are the following: Information or advice on a free national information phone line where it is possible to call and enquire about anything from health to housing. 46

Background

Informative factsheets and advice guides, policy papers, and a range of books. Help for travelling, economic issues, and funeral plans. Aids for the home, such as stair lifts and personal alarms. Support to people with target diseases and problems such as dementia, falls, stroke, and incontinence. British Red Cross. The organization had an income of GBP 182.1 million, and an expenditure of GBP 181.0 million in 2009. The income derives from donations, trading activities, charitable income, and community equipment income. In 2009 the British Red Cross had 28,208 volunteers who carried out a wide range of activities in the UK (British Red Cross, 2009). The organization is involved in a number of fields of aid and relief. One area specifically devoted to old people is health and social care (British Red Cross, 2010). The following services, though not limited to old people, are included: Care in the home: Help after a short hospital stay to prevent unnecessary hospital admissions by providing extra support and care at home through rebuilding confidence, collecting prescriptions, offering companionship, and assisting with shopping. Medical equipment volunteering: Volunteers help get medical equipment service or other aids such as wheelchair. The medical equipment service helps people return to their own homes after illness or surgery, enables them to go on holiday with friends or family, and promotes independence. Transport service volunteering: Volunteers help book medical appointments and carry out everyday activities like shopping or just getting out of the house to socialize. A driver with a vehicle can be provided to offer door-to-door assistance for those in need. In addition, an escort can be provided who, if necessary, will stay with a client throughout the journey.

47

Background

Normally a contribution is requested, based on mileage used, but no one is refused a service because they cannot pay. Therapeutic care volunteering: Therapeutic massage for a patient who is waiting for treatment or recovering from an illness, for a carer, or for someone who is just feeling tense. The service assists relaxation, reduces stress and pain, promotes a sense of well-being, and offers the chance to talk to someone trained in listening skills.

Canada Organized volunteerism has a long tradition in Canada stemming from the eighteenth century. Most of the first organized social services were commenced by the churches (Lautenschlager, 1992). Direct government assistance was virtually nonexistent at the beginning of nineteenth century. The first social welfare programmes began in Ontario in the latter half of the nineteenth century, when the provincial government began assuming some responsibility for sick and elderly citizens and for impoverished women with dependent children. The Canadian modern-day system of health and social services integrates public programmes and services with a vast network of voluntary agencies (Lautenschlager, 1992). In 2003, 161,227 nonprofit and voluntary organizations operated in Canada (Statistics Canada, 2003), accounting for approximately 508 organizations per 100,000 people. These organizations include day-care centres, sports clubs, art organization, social clubs, private schools, hospitals, food banks, environmental groups, trade associations, places of worship, advocates for social justice, and groups that raise funds for medical research. Just over half are registered as charities by the federal government, which allows them to be exempt from a variety of taxes and enables their donors to claim tax credits for donations. Collectively, these organizations draw on more than 2 billion volunteer hours, the equivalent of more than 1 million full-time jobs, and more 48

Background

than CAD 8 billion in individual donations to provide for their programmes, services, and products (Statistics Canada, 2009c). Nearly all the organizations rely on volunteers to some degree; more than half rely on volunteers exclusively (Statistics Canada, 2003). However, Colman (2003) writes that there has been a decline in volunteer hours per capita over the years. From 1987 to 2000, volunteer service hours had dropped by 10.7 per cent nationwide, meaning that fewer people are carrying out the same amount of work done in the past. Also, according to Statistics Canada, the voluntary organizations report substantial problems relating to their capacity to engage volunteers and obtain funding (Statistics Canada, 2003) Many nonprofit and voluntary organizations serve all people, but many also target their services to specific populations such as children, young people, old people, and disabled people. The social service organizations include those nonprofit and voluntary organizations that provide services to older adults. There are 19,099 social service organizations constituting 11.8 per cent of all nonprofit and voluntary organizations, and 11 per cent of Canadians are involved as volunteers in social service organizations. Three major organizations, Meals on Wheels, the Victorian Order of Nurses, the Canadian Red Cross Society, and many others provide assistance to old people. Meals on Wheels originated in Great Britain in 1940–1941 (wikipedia.org, 2010). In Canada, it started in Calgary in 1965 and spread to other parts of the country. In 2005, Calgary Meals on Wheels assisted 1,900 clients by means of the 750 volunteers who deliver meals five days a week within Calgary City limits, for a total sum of 75,000 hours per year. The programme is for people of any age who live alone and who are recovering from a hospital visit.

49

Background

Victorian Order of Nurses (VON) is a national, not-forprofit, charitable, home-care and community-support service organization. Although some programmes are government funded and/or supported by United Way, the VON relies on donations and sponsorships (VON, 2009a). It was founded in Ottawa, Ontario, Canada on 29 January 1897 as a gift for Queen Victoria for the purposes of home care and social services (VON, 2009b). In 2005, the VON was still the largest single, national home-care organization. More than 7,000 staff members, supported by more than 14,000 volunteers, serve thousands of communities (VON, 2009c).The organization offers more than 75 different community programmes at more than 52 sites (VON, 2009c). Some services provided by the organization are carried out entirely by volunteers, others by both nurses and volunteers, and yet others by only nurses. The organization‟s website describes thirteen programme areas that all include a series of home-care and communitysupport services devoted to old people. Canadian Red Cross Society is a humanitarian charitable organization established in Canada in 1896 (Canadian Red Cross, 2010). The mission of the Canadian Red Cross is to improve the lives of vulnerable people. The Society provides service in disaster, injury prevention, and first aid training. The Society is supported by over 26,000 volunteers and 6,400 employees. It is organized geographically into five zones and 295 branches across Canada (Canadian Red Cross, 2010). It relies on donations from individual donors, foundations, and corporations (Canadian Red Cross, 2009), but also from provincial governments. The Society‟s ability to maintain its service capabilities is highly contingent on government funding. The Society provides a wide range of community health care services on a grantor fee-for-service basis in such programmes as: Home care services that help individuals live as independently as possible. Health equipment loan programmes (HELP). 50

Background

Home support which includes the delivery of meals and general assistance, and the rental and transportation of medical equipment to old people. Red Cross community health services are provided by trained staff (community support workers). These community support workers go to the residence, school, or workplace of the client and provide the personal care assistance required. This can include assistance with activities of daily living such as personal care, home management, medication reminders, and companion care.

51

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52

Systematic search of literature: methods

3

Systematic search of literature: methods

Scientific reports on voluntary assistance and informal care were reviewed following the well-established methods for systematic literature review proposed internationally by the Cochrane Collaboration (http://www.cochrane.org/) and in Sweden by SBU. Given the topic, informal care and voluntary assistance, we addressed both quantitative and qualitative issues which can be summarized in the following three points. 1. The occurrence of informal care in the population (prevalence) of industrialized countries with a special focus on Sweden, Italy, the UK, and Canada. Specifically, we addressed the following questions: What is the proportion of elderly persons in Sweden, Italy, the United Kingdom, and Canada receiving informal care provided by relatives and friends, the time devoted to this activity, and the type of services provided? 2. Occurrence of voluntary assistance in the population (prevalence) of industrialized countries with a special focus on Sweden, Italy, the UK, and Canada. What is the proportion of elderly persons in Sweden, Italy, the United Kingdom, and Canada receiving voluntary assistance, the time devoted to this activity, and the type of services provided? 3. Impact of informal care and voluntary assistance on the care recipient or on the health care system. The purpose of this part of the literature search was to investigate whether 53

Systematic search of literature: results

voluntary assistance and informal care have been evaluated, quantified, and validated in terms of its impact on the elderly person‟s well-being and on the health system organization. Studies were identified in searches of Medline, PubMed, and Web of Science using terms such as “voluntary organizations” and “informal care” in combination with “occurrence,” “prevalence,” “incidence,” “risk factors,” “determinants,” “care,” “formal and informal care,” “impact,” and “wellbeing.” In our search strategy we included only original articles published in English in 2000–2009. Information about the selected articles was extracted by one researcher in the group according to methods and criteria developed by Laura Fratiglioni and her group (SBU, 2006) (Fratiglioni et al, 2010). All suitable articles were evaluated by two researchers taking into account their internal validity and three classical causal criteria, when appropriate (Bradford-Hill, 1965) A final index for each study was calculated by following a three-step procedure: Various aspects of the internal validity were quantified using a five-point scale: population type, drop-out rate, diagnostic procedure, the presence of bias and statistical power. For studies aimed at identifying the impact of informal and voluntary care on the elderly person‟s well-being or the health system organization, sources of data, exposure assessment, and control of potential confounders were also taken into account. For studies of risk factors the possible causal relationship were rated according to three specific criteria (the strength, temporality, and biological credibility). The internal validity was subsequently summarized in an index that covers four levels: not acceptable, low, medium and high validity. All researchers in the group contributed to the summary results of the selected studies (evidence). The summary was 54

Systematic search of literature: methods

based only on studies of medium and high quality. Given that comparability between the studies was often limited, it was only possible to make qualitative summaries. Finally, in addition to the scientific literature published in peer-reviewed articles, an internet search was carried out. Other sources, such as contacts with experts and researchers in the field, were investigated. Government, voluntary, and nonprofit organization websites were searched for scientific studies and reports, and the references listed in the retrieved articles were used to retrieve further studies. In addition to this, reports found on the Web were read and examined if published by (a) government agencies such as the National Board of Health and Welfare; (b) national statistics bureaus, such as Statistics Canada; or, (c) international research collaboration, such as EUROFAMCARE. Data from these reports were summarized separately from the peer-reviewed studies.

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56

Systematic search of literature: results

4

Systematic search of literature: results

4.1. Prevalence of informal care For the time period 2000–2009, we identified 29 papers on the frequency of informal care in the four examined countries. Search results are summarized in Table 3.

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Systematic search of literature: results

Table 3 Search results concerning prevalence of informal care in Sweden, Italy, UK and Canada. Number of titles found (in parenthesis; F), number of articles appropriate to the topic and evaluated (E), and number of included articles due to the medium/high quality score (in bold; I). Sweden

Italy

United Kingdom

Keywords

Canada

F

E

I

F

E

I

F

E

I

F

E

I

Informal care elderly/older persons

(43)

12

4

(32)

6

4

(45)

12

7

(12)

0

0

Informal support elderly

(5)

3

0

(3)

0

0

(12)

0

0

(9)

0

0

Informal care & elderly and occurrence

(24)

3

2

(10)

0

0

(16)

0

0

(24)

6

0

Informal care & prevalence

(36)

2

2

(12)

2

2

(28)

3

2

(47)

5

0

Informal care & incidence

(34)

3

3

(10)

0

0

(24)

0

0

(45)

4

0

Formal & informal care

(34)

10

7

(12)

2

2

(20)

4

1

(104) 12

1

Informal support elderly & prevalence

(1)

0

0

(0)

(3)

0

0

(22)

0

0

Formal and informal support & prevalence

(1)

0

0

(0)

(2)

0

0

0

0

(0)

(3)

0

0

(20)

0

0

PubMed

Informal support elderly & incidence

(1)

58

Systematic search of literature: results

Sweden F

E

I

F

E

I

United Kingdom F E

(24)

15

8

(8)

5

1

(10)

4

4

(18)

1

0

Informal support elderly

(8)

4

2

(3)

2

0

(7)

1

1

(12)

0

0

Informal care & prevalence

(10)

2

2

(1)

0

0

(13)

0

0

(5)

1

0

Informal care & incidence

(3)

0

(0)

(1)

0

0

(1)

0

0

Formal and informal care

(31)

14

9

15 (3) 1

(41)

3

3

(42)

3

0

Informal support elderly & prevalence

(2)

2

2

(0)

(1)

0

0

(0)

Informal care seniors

(0)

(0)

(0)

3

2

Keywords Web of Knowledge Informal care elderly/older persons

Italy

Canada I

F

E

I

(26)

Sweden Table A1 (Appendix A) lists the major population-based studies published in peer-reviewed journals between 2000 and 2009 on informal care in Sweden. Only studies scoring medium or high on the quality index (see Methods section; Fratiglioni et al, 2010) were included. The table provides information on study population, drop-out rates, age of participants, ascertainment of informal care, type of assistance, percentage of informal care (or amount of time spent), results, and conclusions. In eleven of the included studies, the prevalence of the elderly people receiving informal care was estimated in three different ways: (1) proportion of subjects receiving informal care in a random sample of elderly persons; (2) proportion of subjects receiving informal care among elderly persons with 59

Systematic search of literature: results

ADL needs; and, (3) proportion of subjects receiving informal care among those old people receiving formal care. Four studies reported the prevalence of informal care among all old people examined. According to one study (Larsson & Thorslund, 2002) based on the national Undersökningen av levnadsförhållanden (ULF) data, 18 per cent of persons 65 years of age and older and living alone had informal care, and 14 per cent of cohabiting persons were cared for by their cohabitant. Another national survey, Swedish Ageing at Home (AH) (Davey et al, 2005), found a 22 per cent prevalence among an older population (75+ years old). In a rural Swedish sample of subjects older than 74 years of age, 38 per cent received only informal care. The amount of informal care was greater than formal care and also greater among demented than nondemented people (Nordberg et al, 2005). One study of an urban population, the (Kungsholmen Project, (KP), found that a majority (60%) of the oldest old (82–100 years of age) were receiving informal care (Larsson & Thorslund, 2002). Men had higher odds of receiving care independently of functional ability, cognitive impairment, or self-reported needs of assistance with IADL. However, after controlling also for cohabitation, the gender differences disappeared, and the main difference was found between persons living alone and cohabiting persons. Three studies estimated the prevalence of informal care among elderly persons with ADL needs. In the Swedish representative sample ULF, 63 per cent of those who received help with IADL were helped solely by family members, but only 35 per cent of the persons receiving help for both IADL and PADL got help solely from family (Sundström et al, 2006). Another study (Larsson, 2006) based on ULF data looked specifically at persons 80 years of age and older that received care, and found that 60 per cent of men and 70 per cent of women living alone received informal care. Furthermore, an increasing trend in the prevalence of informal care among care recipients emerged: informal care 60

Systematic search of literature: results

was provided to 60 per cent of the subjects in 1994 and 70 per cent in 2000 (Sundström et al, 2002). In two studies, the percentage of informal care was calculated only among care recipients. One substudy of the Stockholm Swedish National National Study Study of AgingAgeing and care Care (SNAC-K) investigated urban home care recipients aged 65 and older, and found that 42 per cent received informal care (help with IADL or ADL at least once a week) (Meinow et al, 2005). Additionally, the SNAC project in South of Sweden (Good Ageing in Skåne) reported that 34 per cent received informal and formal care. In both studies the occurrence of informal care was registered by the staff (Karlsson et al, 2008). Finally, two studies investigated the amount of time provided by a caregiver to a family member. The EUROFAMCARE project, which included only caregivers who provided more than 4 hours of care per week, found that the average time devoted to care was almost 40 hours per week (Lamura et al, 2008). Based on a Swedish representative sample (age 16-84 years), Jegermalm and Jeppson-Grassman (2009) found that 52 per cent of the study population helped a relative or a friend with different tasks such as housework, transportation, gardening, or supervision on average 11 hours per month. Specifically, among persons aged 60–74 years, 57 per cent provided help/care on average 20 hours per month. Among persons aged 75–84 years, 22 per cent gave help/care on average 21 hours per week. None of the included studies were designed directly to estimate the prevalence of informal care; rather, they aimed to investigate the development and incentives of informal care. They reached similar conclusions, which can be summarized in the following points: 1. The responsibility for helping elderly people rests heavily on informal carers (Hellström and Hallberg, 2004). 2. Family members increasingly shoulder the bulk of care, but even privately purchased care seems to be expanding (Sundström et al, 2002). 61

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3. At least among women 80 years of age and older living alone with ADL limitations there is a significant temporal trend towards an increasing proportion of subjects receiving informal care and a decreasing percentage with home help (Larsson, 2006). 4. Most elderly people in need of care rely on help solely from family members, but many are helped both by family and the government. Whether an old person receives both formal and informal care is likely to depend on their care needs: the larger the need, the more likely it is that there will be both public and family support (Sundström et al 2006). 5. Recipients receiving help from a combination of informal and formal carers were older, were not able to stay alone at home, and had significantly more help with IADL and PADL. Informal help alone was most common to those who received less extensive ADL help and no public care (Hellström & Hallberg, 2004). One study (Jegermalm, 2006) based on a random sample of 18-84 year old persons (n= 1639; response rate 61%) in Stockholm has investigated the type of help provided by a next of kin. A combination of providing practical help and keeping company was the most frequent pattern of care (Table 4).

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Table 4. Categories of caring and their frequency (%) in a random sample from Stockholm (n=676) (Jegermalm, 2006)

Category

%

1. Personal care (whether or not in combination with

15.0

other caring tasks) 2. Keeping company and/or keeping an eye on

16.5

3. Practical help (any combination of housework,

45.1

paperwork, taking out, gardening, etc.) + Keeping company and keeping an eye on 4. Practical help only

20.7

Missing cases

2.7

Reports in non-peer-reviewed journals In addition to searching for articles published in peerreviewed journals, an internet search and contacts with persons working with this topic led to the detection of a number of reports whose results were quite similar. A report from 2002 (Anhörig 300) by Socialstyrelsen estimated the extent of informal care by using a nationwide representative sample from 1994 and 2000. Persons aged 75 years and older (N = 642) were asked about their capacity to manage different ADL functions. Table 5 lists the type of support received by the old persons when they needed it.

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Table 5. Proportion (%) of elderly persons living at home, aged over 74 and receiving different types of care, years 1994 and 2000.1 All

Informal care only Both informal care and home help Only home help

Living alone 1994 2000 N = 266 N = 338

Living with others 1994 2000 N = 275 N = 30)

1994 N = 538

2000 N = 642

59

66

33

47

85

88

13

16

17

24

9

7

28

18

51

28

5

5

According to a SNAC Vårdsystem report, 41 per cent of elderly care recipients (65+ years old; N = 2141; 43% living at home and 28% living in an institution) got weekly help from someone other than the municipality. The help was usually provided by children, a spouse (the most common provider when present), other relatives, or friends. In addition, 74 per cent of persons living in their own homes had weekly social contact with relatives and/or friends, and 4 per cent had weekly social contact with somebody from a voluntary organization. Among elderly care recipients who were living in institutions, 41–62 per cent had frequent contact with relatives and friends depending on the type of institution, but the contact with organized volunteers was less than 1 per cent (Lagergren et al, 2002). Finally, Szebehely (2006) found that almost one fourth (24%) of persons over 55 years of age (N = 1202) reported that they help an elderly, ill, or physically dependent person on a regular basis. According to the same report, 3 per cent of persons from the same age group provided care inside their own home to an elderly person every day or several times per week, and 6 per cent helped daily or several times a week outside their own homes. Of persons aged 55 years and older, 64

Systematic search of literature: results

15 per cent gave help once a week or less often. Among persons aged16–84 years, 6 per cent of women and 4 per cent of men helped somebody in their own households, while 20 per cent of the women and 17 per cent of the men helped somebody outside their own households (Jeppson Grassman, 2001). In sum, the proportion of elderly persons receiving informal care in the Swedish population varies between 18% and 70% according to the included studies depending mainly on age of the studied sample and ADL needs. When the percentage was calculated only among persons with ADL impairment, the prevalence of informal care was larger than in the general elderly population, as expected. However, the prevalence of informal care was lower among elderly persons who received formal care. When a subject needed assistance in personal tasks (PADL), the prevalence of informal care decreased and a combination of public and family support was more common. In older age groups (80+) the prevalence figures were similar regardless of the study population, most likely because ADL needs are more widespread in older age groups (Table 6). Table 6. Estimated prevalence of informal care (%) among elderly persons in different age groups in Sweden Proportion of all elderly

Proportion among persons with ADL needs

65+

20% of persons living alone 15% of cohabiting persons

60% in case of IADL needs 35% in case of IADL + PADL needs

75+

20–40%

60–65%

80+

60% Men: 73% Women: 57%

60% of men living alone 70% of women living alone

Age

65

Proportion among formal care recipients 35–40%

45%

Systematic search of literature: results

Italy Table A2 (Appendix A) lists the major population-based studies published in peer-reviewed journals between 2000 and 2009 concerning informal care in Italy. All included studies scored medium or high in the quality index as reported in Methods. The table includes information on study population, drop-out rates, age of participants, ascertainment of informal care, type of assistance, percentage of informal care (amount of time spent), results, and conclusions. Only three peerreviewed articles investigated the occurrence of informal care or time spent in this activity. According to Carpenter (2005), almost all elderly Italians have access to relatives or friends who help them at home. When admitted to medical or surgery wards, 16.5 per cent of people older than 75 years of age receive help with ADL needs from relatives or friends who keep them company at the hospital. The European Study on Adult Well-being (ESAW) survey was carried out in five European countries using nationally representative samples of the population aged 50–90 years. Unlike other national samples, Italian respondents were requested to answer a supplementary set of questions on oldage care (Quattrini et al, 2006). The ESAW study estimated that 11 per cent of the population older than 50 years of age provided care to a dependent older relative, corresponding approximately to 2,350,000 persons. Many of them were heavily involved in this care, especially in those areas (South Italy and rural-mountain districts) where public service availability is lower. The ESAW survey (http://www.bangor.ac.uk/esaw) showed that the average carer is 61 years old (standard deviation 8.4), with women being on average slightly younger than men. Although an increase in the number of sons looking after disabled old parents has recently being reported, care remains a task traditionally performed by women. Two thirds of the total amount of informal care is provided by women, who are also more engaged in heavy care tasks. According to a previous 66

Systematic search of literature: results

study of a sample of 802 caregivers of non-institutionalized old people affected by Alzheimer‟s disease, the percentage of women carers increases with the degree and severity of the cared recipient‟s disability and/or illness, reaching 81 per cent in the case of very seriously disabled patients (Vaccaro, 2000). The majority of carers (about 60%) declared to be engaged in all activities necessary to meet the needs of the assisted person. Among the caring activities most frequently offered by family carers were personal care and hygiene, preparation and administration of meals, company, errands and shopping, and housework. While women generally performed all activities, men appeared to be mostly involved in specific tasks such as management of financial matters, repairs, and transportation, as well as the settlement of bureaucratic matters. There are also many cases of „multiple‟ care. The Italian National Research Centre on Ageing (INRCA) survey found that 6 per cent of the respondents declared that they were currently providing care to more than one elderly person at the same time, and 20 per cent declared they had cared for other elderly persons in the past. Primary carers provided on average 92 hours a week of care-related tasks according to the INRCA survey (Tarabelli et al, 2001). Much lower levels of care are recorded when we focus on nonprimary carers. As shown by the ESAW data, all kinds of carers spent on average 23.8 hours per week in assistance (Quattrini et al, 2006). Most of the data available on the prevalence and characteristics of care provided to elderly people in Italy is derived from the EUROFAMCARE project. The EUROFAMCARE project was funded in 2004 by the European Union to collect detailed information on the situation of carer support in six countries: Germany, Greece, Poland, Sweden, and the UK (EUROFAMCARE Consortium, 2002). As the subtitle clearly reveals – “Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage” – the project was 67

Systematic search of literature: results

mainly aimed at providing a comprehensive picture of the existence, familiarity, availability, use, and acceptability of services or measures addressing the needs of family carers of older people in Europe. In this respect, an explicit objective has been to formulate empirically based suggestions at different levels: (a) at a macrolevel, for the implementation of more organic and carer-friendly policies addressing family carers in Europe; (b) at a mesolevel, to promote an in-depth collaboration between service providers, local agencies, and family carers, thus contributing to the development of services better responding to the users‟ needs; and, (c) at a microlevel, to better understand the interpersonal dynamics underpinning care in order to formulate recommendations to improve the carers‟ quality of life and consequently also the quality of the help received by the cared-for older persons. In each of the six core countries of the EUROFAMCARE project, a national survey of about 1,000 primary family carers of people older than 64 years was carried out in the first half of 2004, the main inclusion criteria being that carers provided at least four hours of care per week. Carers have been stratified by kind of locality (metropolitan, urban, or rural) representing different regions (four macro-areas in Italy). They were interviewed using a common assessment tool (CAT) inquiring into several dimensions of the care situation: burden of care, needs of the carer in relation to those of the older person, experiences in the use of existing support services, and conciliation of professional and caring responsibilities (Quattrini & Lamura, 2006). The average age of the people receiving care was 82 years, with persons aged 80 and over amounting to 63.6 per cent of the whole sample. The great majority of older people, almost all of Italian nationality, were women (71.2%) and widowed (60.2%), married and single representing only a minority (32.6% and 6.4% respectively). More than one out of five older people (21.1%) lived alone. Those who did not live alone mainly cohabited with children (35.6%), a partner 68

Systematic search of literature: results

(31.8%), children-in-law (12.9%), or grandchildren (11.9%), while 10.1 per cent lived with paid carers. When carers were asked to list the main reasons why older people needed care and support, mobility problems were reported as the most common reason (29.5%), followed by physical illness/disability (18.6%). Other reasons were age-related decline (15%), difficulties in self-caring (9.9 %), memory or cognitive problems (9%), lack of security, and need for company (or loneliness) (7.8%). As it is well known that memory problems have a remarkable influence on providing care, the EUROFAMCARE survey asked carers specifically whether the cared-for person had cognitive problems. Almost half of them (49.1%) answered affirmatively, and in 61 per cent of these cases physicians had already provided an official diagnosis of cognitive impairment. The collected data showed that only 35.7 per cent of the cared-for people received financial support or allowances related to the caring situation consisting of EUR 453 per month. Reports in non-peer-reviewed journals In addition to the PubMed search, information on the occurrence and characteristics of informal care was derived from a search on the Web. The amount of informal care can substantially differ among situations, according to care demands and the available amounts of professional care. However, most of the assistance to Italian elderly people with disabilities is given by informal carers, followed by private and formal care (Figure 5). The main areas of need are housekeeping, organization of assistance, and medical and psychological support. Medical support is mostly supplied by formal care (Gori & Lamura, 2009).

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Homecare

General organization

Psychological support Primary informal caregiver Other informal care

Medical assistance

Private care Transportation

Formal care

Personal assistance

Financial help 0

10

20

30

40

50

60

Figure 5. Prevalence (per 100; %) of dependent persons aged 65+ according to received care. Italy 2007. From Gori & Lamura, 2009.

Finally, family care of old people in Italy is often characterized by a parallel phenomenon of continuity over time, which implies long duration, and of pervasiveness, which leads to intense engagement in performing the caring tasks. These aspects represent a dangerous combination in terms of high risk for stress and overburden for many carers (Lamura et al, 2004). In summary, family carers represent by far the most numerous group of those providing care in Italy. It is still a rooted value of Italian society that old-age care should be accomplished by the family. However, the ageing of the Italian population is quite rapidly changing the traditional attitudes towards the issue. Demands for greater recognition not only of the needs but also of the rights of carers are growing louder. Currently, a trend towards an increased involvement of market-oriented care service can be observed in Italy; private aids have become the second most important care providers for disabled people older than 80 years. 70

Systematic search of literature: results

United Kingdom Table A3 (Appendix A) shows the major population-based studies concerning informal care in the UK published in peerreviewed journals from 2000 to 2009 that scored medium/high on the quality index (see Methods section). The table includes information on the study population, drop-out rates, age of participants, ascertainment of informal care, type of assistance, percentage of informal care (amount of time spent), results, and conclusions. The nine included studies investigated the occurrence of informal care in various ways, more specifically, the prevalence of receiving (Pickard et al, 2000; Carpenter, 2005) or giving (Hirst, 2002; Dahlberg et al, 2007), or both receiving and giving (McGee et al, 2008) informal care. Approximately four out of five English dependent persons aged 65 years or older were reported to receive informal care from family members, neighbours, or friends (Pickard et al, 2000). Of the home care recipients in the UK, 87 per cent had access to an informal carer (Carpenter, 2005) and 86 per cent of disabled people older than 65 years received help, mostly from their spouses, but also from their children (Pickard et al, 2007). Half of the population aged 65 years and older in a community-based survey from the Republic of Ireland and Northern Ireland had received help with daily activities over the previous twelve months from spouse or relatives in or outside the household (McGee et al, 2008). Considering the care-givers‟ perspective, approximately 10–12 per cent of the population was providing unpaid care for a sick, elderly, or disabled family member or friend (Hirst et al, 2001; Dahlberg et al, 2007; Del Bono et al, 2009). These figures varied by age and gender. Participation in providing care increased with age and peaked (20%) at age 45–59 (Dahlberg et al, 2007). Among people 65 years and older, men provided family care more commonly than women (Hirst, 2001). These gender variations were explained, however, by differences in marital status, as most elderly men still had a 71

Systematic search of literature: results

wife to look after, but most elderly women no longer had a husband (Del Bono, 2009). Finally, a study by EUROFAMCARE reported that the mean number of care hours per carer was 51 hours per week. Three of the included studies focused on temporal trends in the amount of informal care by exploring the changes during the 1990s (Hirst et al, 2002) and predictions by year 2031 (Pickard el al, 2001 and 2007). Hirst (2002) reported that female extra-resident caregivers had decreased during the 1990s but not co-resident caregivers. The proportion of coresident male carers had increased mostly. Pickard et al (2000 and 2007) simulated the future volume of informal care and estimated that more people are likely to receive informal care in the future. Furthermore, it was projected that care by spouses, but also care by children will rise by 2031. According to Hirst (2002), the incidence of extra resident care-giving in Great Britain increases with age, peaks around ages 55 to 64 years, and then declines through the older age groups according to data from the 1990s. Women are more likely than men to become extra-resident carers across almost the entire age range. By comparison, the incidence of coresident caregiving fluctuates somewhat, but generally increases with age to around 75 years. At that age men are more often coresidential carers (Hirst, 2002). Reports in non-peer-reviewed journals In addition to the peer-reviewed articles, a number of national and EU reports described the magnitude of informal care in the UK. According to a report to the European Commission (Comas-Herrera et al, 2003) informal care by family, friends, and neighbours was the most important source of care for older people: more than half (53%) of persons aged 65 years and older received informal care only, as compared to 34 per cent who got both informal and formal care. No more than 9 per cent received formal care only and 3 per cent received no 72

Systematic search of literature: results

care at all (Comas-Herrera et al, 2003). In the 2001 census, people were asked if they provided unpaid care for a family member or friend, and for how many hours. The results revealed 5.2 million carers in England and Wales, including over one million providing more than 50 hours a week (National statistics, 2003). Of those carers, 20,513 were over 85 years old, 60 per cent were women, and 21 per cent were not in good health themselves (Shaw & Dorling, 2004). It has been debated whether there will be enough carers if the current patterns continues, since the number of recipients are projected to increase from 2.2 million today to 3.0 million in 2050 in the UK (Karlsson et al, 2006). According to EUROFAMCARE (Nolan et al, 2004), informal care was provided most commonly for the following activities: practical help and keeping an eye on the elderly person. Carers living in the same household also commonly provided personal care or physical help. Table 7 shows the type of help given by informal carers in the UK in 2000/2001. In sum, in the UK, 10–12 per cent of the population provided unpaid care for a sick, elderly, or disabled family member or friend. Four out of five British persons over 65 years of age and ADL dependent received informal care from family members, neighbours, or friends. This proportion is likely to increase in the future. More frequently, the carers are women, with the exception of coresidential carers at higher ages, who are more commonly men. It is relevant to note that 20 per cent of carers are not in good health themselves. Among recognized carers, the mean number of care hours provided was 51 hours per week.

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Table 7: Proportion of carers (%) providing different types of help, 2000 / 2001, UK, separately for carers cohabitating or not with the cared person (Nolan et al, 2004) Type of activity

Carers cohabitating with the cared person YES NO ALL ( %) ( %) ( %) 44 11 22 51 15 26 57 25 35

Giving medicines Personal care (e.g. washing) Physical help (e.g. with walking) Paperwork or financial matters 41 38 Taking out 49 53 Keeping company 49 58 Surveillance 62 59 Other practical help 69 73 From General Household Survey, Office for National Statistics.

39 52 55 60 71

Canada Table A4 (Appendix 4) describes the major population-based studies of informal care in Canada, published in peerreviewed journals from 2000 to 2009, that scored medium/high in the quality index (see Methods section). The table includes information on study population, drop-out rates, age of participants, ascertainment of informal care, type of assistance, percentage of informal care (amount of time spent), results, and conclusions. None of the studies found and included in this review reported either the proportion of elderly persons receiving informal care or the proportion of persons providing care. These studies measured informal care as time (hours per week or month) received and given for assistance. Furthermore, the ascertainment of informal care was reported differently: in the Stobert and Cranswick study (2004), both carers and care recipients reported the voluntary services, whereas in the Lafreniere study (2003), Fast et al. (2004), and Keating et al. (2008), the care recipients did the reporting. Keating and Fast (2000) examined the carers‟ reports. ADL and IADL were 74

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reported and examined in all the studies, but not all studies provided the proportion of time dedicated to the various types of care. Lafrenière et al. (2003) found that dependent older adults living in private households received a median of 3 hours of help per week. Informal care was the main source of care used by older adults accounting for 50 to 73 per cent of the help time received during one year, whereas formal care ranged from 19 to 33 per cent. Furthermore, Lafrenière et al (2003) showed that the number of hours of received help relied on a particular type of network and varied with the sociodemographic status of the recipients. For example, old people living with others (not a spouse) received the greatest amount of informal help, whereas those living alone received significantly less mixed help time than did those living with a spouse. The causal link, however, is uncertain. Also, age had a significant impact on the number of hours of assistance reported by recipients who had informal help. Weekly hours increased with advancing age up to 80 years and then decreased. Finally, for recipients of mixed help, an increase in hours from formal sources did not significantly reduce the hours received from informal sources. Stobert and Cranswick (2004) reported that carers aged 65 years and older spent about 5 more hours per month giving informal care than carers 45–64 years old did. In addition, women dedicated almost twice as much time to providing informal care than men: 29.6 hours monthly for women compared to 16.1 hours monthly for men. Women spent more time assisting with housekeeping and personal care, whereas men spent more time on household maintenance and transportation. In another study, Keating and Fast (2000) specified that the average age of women acting as carers was 46 years, most were married and employed (52%) and only a minority had young children at home (66%). Finally, three studies (Fast et al, 2004; Keating et al, 2008; and Keating & Dosman, 2009) investigated the networks of 75

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elderly people and all three concluded that as network size increases, care recipients get additional hours of care, help with more tasks, and more help with each task. Reports in non-peer-reviewed journals By doing a general search on the Web, we found a report prepared by Statistics Canada based on the General Social Survey (GSS) (Statistics Canada, 2002) years 2002 and 2003, concerning health and well-being of older adults in Canada (Turcotte & Schellenberg, 2006). Data from this survey were also used in some articles listed in Table A4, such as Stobert and Cranswick (2004), Keating et al, (2008); and Keating and Dosman (2009). In one of the sections of the report, A Portrait of Seniors in Canada, the assistance received from members of the social network was investigated, excluding help from formal sources such as paid employees, governmental, or nongovernmental organizations. Respondents to the GSS were asked if they were helped with tasks in the previous month, excluding help from people living with them or help obtained through an organization. In the age group 65–74, about 28 per cent reported receiving help, and in the age group 75 and over, 38 per cent reported to have received at least one form of unpaid help in the past month. Older individuals who received help from outside the household were more likely to receive help regularly than middle-aged individuals. Figure 6 shows the proportion of older adults in different age groups that received help with tasks in the preceding month. The prevalence of receiving help for transportation or running errands was significantly higher among older adults (75+ years) than among individuals in younger age groups. In 2003 about 29 per cent of adults aged 75 years and older reported that they had received help for transportation or running errands in the preceding month, but only 16 per cent of persons in the 65–74 age group had. Those who lived 76

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alone were more likely to receive all types of help than those living with a spouse or living with a person other than a spouse. The differences were particularly noticeable in receiving help for transportation or running errands: about 35 per cent of older adults living alone compared to 14 per cent of those living with a spouse.

Figure 6. Percentage of persons who received help in the past month: type of help received by age group, 2003. From Statistics Canada, General Social Survey, 2003

The second part of the report by Statistics Canada focused on adults aged 65 years and older who received help due to longterm health problems or physical impairment. It included help and care provided by all sources, formal and informal. Formal help is defined in the General Social Survey as care or help provided by organizations or public sector employees, and informal help as care or help given by coresidents and through social networks. In 2002, about one million older adults who lived in private dwellings received help because of long-term health problems or physical impairment affecting their ability to handle everyday activities (Turcotte & Schellenberg, 2006), accounting for 26 per cent of Canadians 77

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older than 64 years. The care included any informal and formal help with indoor or outdoor household work, shopping or transportation, or personal care (Turcotte & Schellenberg, 2006). Looking only at informal care, 45 per cent of persons aged 65 years and older and about 40 per cent of adults aged 85 years and older received their assistance from this source. Among those old adults who received help because of long-term health problems, a little less than half received help only from informal sources, although older adults (85+ years) were less likely to receive only informal care (Figure 7).

Figure 7. Proportion of older adults (%) who received care because of a long-term health problems: informal and informal care by age groups, 2002. From Statistics Canada, General Social Survey, 2002.

The type of help that older adults received because of longterm health problems varied across age groups. At older ages, adults were less likely to require help with work around the house, but they were more likely to require help for all other types of activities. For example, 36 per cent of adults aged 85 and older and still living in a private home received assistance with bathing, toileting, and other personal tasks. Men were 78

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not as likely as women to receive help, and they were not as likely to receive the various types of help (Turcotte & Schellenberg, 2006). Also, the likelihood of receiving more types of help increased significantly with age. Among adults aged 85 years and older who received some type of care because of long-term health problems, one third received help in all four major categories. This was the case for only 15 per cent of people aged 65–74 years (Turcotte & Schellenberg, 2006). Looking especially at the category of personal care, the survey shows that old people who received personal care were likely to receive the help from the government or from nongovernmental organizations. In 2002, 29 per cent of old people who received help with personal care received it, in part or in total, from at least one nongovernmental organization. Close to one quarter of care recipients reported their personal care had been provided by the government (24%) but about the same proportion received help from a spouse (23%). In sum, the proportion of old people who were assisted by significant others in Canada varied depending on study design. The amount of time devoted to assistance given by significant others fell within a range of 3–15 hours per week. The type of services provided by significant others varied among the studies, but most of them included both ADL and IADL. Regarding the role of networking, as network size increased, care recipients got additional hours of care, help with more tasks, and more help with each task. A 2002 report on health and living conditions of old adults in Canada showed that 45 per cent of adults aged 65 years and older living in private households received some form of assistance from informal sources, and adults 85 years and older received about 40 per cent of help from informal sources due to longterm health problems or physical impairment.

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Comparative studies A handful of studies compared the occurrence, frequency, type, and impact of voluntary and informal care directed to elderly persons in different European countries, including Sweden. Only one article compared Sweden with Canada. The Aged in Home Care project (AdHOC) (Carpenter, 2005) is a study in eleven EU countries (N = 4010) using the resident assessment instrument (interRAI) to assess the needs and care of people aged 65 years and older (mean age 82.3 years). The mean refusal rate was 19.6 per cent. This study found large differences in availability of informal care: In Sweden 23 per cent of old people lacked informal carers, and in the UK and Italy, the corresponding figures were 13 per cent and 3 per cent respectively. EUROFAMCARE, an EU funded project in six countries in 2004 (N = 6000), showed that carers in Italy and the UK provided approximately 50 hours of care per week, while Swedish carers provided around 38 hours weekly. In Sweden the informal carer most often was a spouse or partner (40%) while in Italy it was more common (61%) that she/he was an adult child. In the UK, both children (32%) and spouses (23%) were carers, but “other” carers (41%) were most frequently represented (Lamura et al, 2008). The European Survey of Health, Ageing, and Retirement in Europe (SHARE) (N = 22,000) found that elderly Swedes (mean age 64 years) living alone received informal care on average 50 hours per year (Bolin et al, 2008). The lowest figure of 20 hours per year was detected in Switzerland and the highest, 232 hours per year, in Italy. The study gave support to the idea of a north-south gradient of informal care, where southern European countries are characterized by strong family ties and northern European countries by weak family ties. The Swedish figures are uncertain, however, since the response rates were unacceptably low, 50.2 per cent, and low

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response rates hampered several results from the other European countries (De Luca & Paracchi, 2005). Figure 8 shows the type of care that is provided in Sweden, Italy and UK according to the EUROFAMCARE study (Lamura et al, 2008). The most frequent kind of help provided by careers was emotional and psychological support, followed by domestic care and transportation. In Sweden and Italy financial management and organizing care/support were common activities as well. Financial support was the least frequently provided form of assistance. Italian caregivers, not unexpectedly, provided more care than caregivers in the other two countries; Swedish carers, however, reported giving large amounts of care, too.

Figure 8. Type of care provided by caregivers in Italy, the UK, and Sweden. From EUROFAMCARE, 2008.

A project called Old Age and Autonomy: The Role of Service Systems and Intergenerational Family Solidarity (OASIS) collected 81

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information from an age-stratified sample of 6,106 people, aged 25–102 years, from the urban populations of Norway, England, Germany, Spain, and Israel (Motel-Klingebiel et al, 2005). The analyses showed that the total quantity of help received by older people was greater in welfare states with a strong infrastructure of formal services. Moreover, when measures of the social structure, support preferences, and familial opportunity structures were controlled, no evidence of any substantial “crowding out” of family help was found. The results support the hypothesis of “mixed responsibility,” and suggest that in societies with well-developed service infrastructures, help from families and welfare state services are accumulative. Finally, one study compared Swedish and Canadian data (Miedema & de Jong 2005). The article was based on Swedish and Canadian people aged 80 years and older who were assessed from medical, psychological, and sociological points of view. Because of the small sample size (N = 149 + 212), the study could not be included in our systematic review of the literature. However, the results deserve some comments. Canadians reported receiving far more informal and formal support than Swedes, despite the fact that Sweden provides more public-funded support than Canada does. The authors speculate that the term “support” is a cultural construct with different meanings in Sweden and in Canada.

Chapter summary The prevalence of informal care varied both within and between countries. Figure 9 graphs an overview of the results from the different countries.

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Italy (65+) UK (65+) Canada (65+) Canada* (75+) Sweden (65+) Sweden (82+) Sweden (65+)

0

20

40

60

80

100

*Help from cohabiting person is not included.

Figure 9. Prevalence (%) of informal care to the elderly population (light grey bars) and to dependent elderly persons (dark grey bars) in the examined countries.

In Sweden, the reported frequency varied mainly due to the differences in age and ADL needs of old people. Among persons aged 65 years and older, 18 per cent of those living alone received informal care, while 60 per cent older than 82 years received informal care. When prevalence was calculated solely for persons needing help with ADL, approximately 60– 70 per cent of older persons living alone received informal care. There were indications of an increasing trend of prevalence of informal care among care recipients, but when ADL needs became personal (PADL) the prevalence of informal care decreased, and a mix of public and family support became more common. In Italy the prevalence of informal care was much higher: one study found that 97 per cent of Italians aged over 64 years received informal care. In the UK the prevalence was higher than in Sweden, with 80-85 per cent of dependents aged 65 years and older receiving informal care, but it was not as high as in Italy. The scarcity of peer-reviewed studies reporting prevalence figures for Canada made it challenging to compare 83

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this country with any other. Reports from Statistics Canada showed that, among adults aged 75 years and older, 38 per cent had received at least one form of unpaid help in the preceding month, although help from cohabitants was not included. Among all adults who received help because of long-term health problems, three quarters received help, in part or in total, from informal sources. Looking especially at the category of personal care, the data showed that old people who specifically received personal care were more likely to receive the help from formal care sources. Some comparative studies found that more elderly people in Sweden lacked informal caregivers than in Italy and the UK. When a caregiver was available, he/she provided less weekly care in Sweden than in Italy or the UK. Elderly, single-living Swedes received approximately one fifth of the yearly hours of informal care provided in Italy, supporting the idea of a north-south gradient with weak family ties in the north and strong in the south. The most common type of care provided in Sweden, the UK, and Italy was emotional support, domestic care, and transportation. Financial support was common in Italy, but uncommon in Sweden, and for the UK it was somewhere in between. The provision of formal care services was low in Italy even for highly dependent old people, creating a higher caregiver burden and greater vulnerability to possible elder abuse. Finally, countries with a strong infrastructure of formal services may facilitate the collaboration of public and family care, thus creating the mixed responsibility that results in a higher aggregation of total support.

4.2. Prevalence of voluntary assistance As described in the Methods section, a search of the scientific literature was carried out in order to answer the following question: what is the proportion of elderly persons in Sweden, Italy, the United Kingdom, and Canada receiving voluntary assistance, the time devoted to this activity, and the types of 84

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services provided? A summary of the search results for studies published in 2000–2009 in peer-reviewed journals from Sweden, Italy, the UK, and Canada is reported in Table 8. Table 8. Search results concerning prevalence of voluntary assistance in Sweden, Italy, UK and Canada. Number of titles found (in parenthesis; F), number of articles appropriate to the topic and evaluated (E), and number of included articles due to the medium/high quality score (in bold; I). Sweden

Italy

Keywords

United Kingdom F E

F

E

I

F

E

I

Volunteering

(10)

0

0

(4)

2

0

(20)

Voluntary organizations

(20)

1

0

(8)

0

0

Voluntary service

(7)

0

0

(14)

0

Voluntary assistance

(4)

0

0

(3)

1

Voluntary organization care seniors

(0)

(0)

Voluntary organization giving services elderly

(0)

(0)

Voluntary care old persons/elderly

(28)

Canada I

F

E

I

1

0

(36)

0

0

(168)

5

1

(66)

2

0

0

(197)

5

1

(35)

2

0

0

(18)

2

0

(15)

0

0

(0)

(4)

0

0

(0)

(0)

0

0

PubMed

1

0

(38)

1

85

1

(126)

4

1

(1)

Systematic search of literature: results

Keywords

Sweden

Italy

United Kingdom F E

Canada

F

E

I

F

E

I

I

F

E

I

Volunteering

(5)

0

0

(5)

1

0

(18)

3

0

(26)

1

0

Voluntary organizations

(14)

3

1

(4)

1

1

(54)

4

0

(39)

1

0

Voluntary service

(10)

1

1

(13)

1

1

(71)

4

0

(3)

0

0

Voluntary assistance

(2)

0

0

(0)

(3)

1

0

(10)

0

0

Voluntary organization care seniors

(0)

(0)

(0)

(0)

Voluntary organization giving services elderly

(0)

(0)

(0)

(3)

0

0

Voluntary care old persons/elderly

(2)

(3)

0

0

Web of Science

1

0

(1)

0

0

(2)

0

0

Sweden We found only one study that measured the prevalence of giving voluntary assistance (volunteering) and fulfilled the inclusion criteria of this systematic review of the literature (Jegermalm & Jeppson Grassman, 2009). Data were collected by means of telephone interviews in a Swedish representative sample (n = 2000; age = 16–84 years) in 2005. The response rate was 70 per cent. All participants were asked if they had done any volunteering (in voluntary organizations such as the Red Cross) in the previous 12 months. A second question aimed at identifying the prevalence of informal help and care, especially to someone who was sick, disabled, or old and in need of special care on a regular basis. Approximately half of the responders (51%) reported that they were volunteers, slightly more men than women. Among persons aged 60–74 86

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years, 48 per cent were volunteering on average 11 hours per month, and 27 per cent of persons aged 75–84 years were volunteering on average 14 hours per month. This study also investigated the prevalence of informal care, which was 52 per cent (Table A1, Appendix), and the authors reported that both informal care and volunteering were common phenomena in Sweden. Among people 60–84 years old, 25 per cent were both informal helpers and volunteers. This group has been labelled “superhelpers” in earlier research. The authors concluded that “there does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as citizens.” It has been difficult to find any information on the prevalence of elderly persons receiving help from volunteers in Sweden. Only one report was found (see below). Finally, some papers did not estimate the prevalence of volunteering, but rather discussed organizational issues such the complementary aspect (Dahlberg, 2006), type of organization, or future development of the voluntary sector in Sweden (Lundström & Svedberg, 2003). Those studies are not included in this chapter. Reports The SNAC-Vårdsystem investigation of 2,141 people older than 64 years found that 4 per cent of the persons living in their own homes had weekly social contacts with somebody from a voluntary organization. Among elderly care recipients who were living in institutions, the contacts with organized volunteers were less than 1 per cent (Lagergren et al, 2002). Data were collected by knowledgeable staff members, but they may not have had full information on the occurrence of assistance from volunteers.

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Based on SHARE data, the proportion of old people (mean age = 64.8 years) active in voluntary assistance to old people was estimated for European countries. As mentioned earlier, the SHARE data had very low response rates, below the acceptance levels of our inclusion criteria for this review (Fratiglioni et al, 2010). It is nonetheless interesting to note that SHARE reported the highest rates of volunteering in Northern Europe: In the Netherlands, 21 per cent of elderly persons had done some voluntary or charity work in the preceding month. In Sweden the comparable figure was 18 per cent (Haski-Leventhal, 2010). The internationally high volunteering rate of the Swedish population was also confirmed in a new report from Ersta Sköndal University College 2010, using population data from Statistics Sweden (SCB). The results were based on telephone interviews of a random sample of Swedes who were 16–84 years old (N = 1,776; participation rate = 70%). In 2009, almost half of Swedes were engaged in some type of voluntary work (Svedberg et al, 2010). Moreover, the Swedish engagement was stable over time according to the same report. When the results from 2009 were compared with three earlier data collections, 1992, 1998, and 2005, the active proportion of the population 16–74 years old was stable at approximately 50 per cent for each period (Svedberg et al, 2010). These data reflect all kinds of voluntary work. At the core of welfare services, such as old-age care, however, the voluntary sector in Sweden plays no central role. The responsibility to finance, organize, and provide health care and social services still lies in the hands of the public sector (Jeppson Grassman, 2005). In sum, although data are scarce, they consistently suggest that many Swedes are currently volunteering. There does not seem to be any fundamental disagreement between this phenomenon and the Swedish type of welfare state. How much voluntary activity is devoted to old people is unclear, however The only data we found seemed to imply that a 88

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limited proportion of old people receives assistance from volunteers.

Italy None of the peer-reviewed articles found in our search turned out to be relevant for estimating the prevalence of voluntary assistance to elderly persons in Italy. Reports According to the National Institute of Statistics, the total number of volunteers in Italy is around 800,000 (ISTAT, 2005). Most of the care provided by the volunteers addressed ill persons (52%), whereas only 9.4 per cent of voluntary assistance was devoted to elderly people if self-sufficient and 2.2 per cent if they were dependent. Thus, an estimated 640,000 and 150,000 elderly people receive care from voluntary associations (ISTAT, 2005).

United Kingdom Among the few articles detected in our search of the scientific literature, only one prevalence study fulfilled the criteria. This was a community-based survey from the Republic of Ireland and Northern Ireland (N = 2033; age 65+). In the Republic of Ireland, 2 per cent, and Northern Ireland, 3 per cent of the populations surveyed reported receiving help with daily activities in the preceding 12 months from a voluntary organization (McGee et al, 2008). Reports Looking for new strategies to keep the increasing number of older people living in their own homes has brought on a renewed interest in the use of volunteers in the UK. One way that individuals contribute to their community is through 89

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volunteering activities, giving unpaid help through groups, clubs, or organizations. Over 2,700 adults (aged 16+) in households in England were interviewed in Helping Out, and 59 per cent of the sample had given volunteering help through an organization in the last year; 39 per cent did so on a regular basis (at least once a month). On average, formal volunteers spent 11 hours monthly in assistance activity. It should be noted that volunteering in organizations focusing on health and disability was a smaller part (22%) of the total volume (Cabinet Office, 2007).

Canada The literature search did not result in any peer-reviewed articles concerning the contribution of voluntary organizations in the care of elderly persons. Reports The 2007 Canadian Survey of Giving showed that almost 12.5 million Canadians, the equivalent of 46 per cent of the population aged 15 and over, volunteered for charitable and nonprofit organizations in 2007 (Statistics Canada, 2009c). A national survey prepared by Statistics Canada (Statistics Canada, 2003) on voluntary organizations reported that 11 per cent of the 161,227 nonprofit and voluntary organizations served old people in Canada. However, it was not clear if the services were free, paid for by the government, or paid for by the care recipient. The services offered included geriatric care, in-home services, homemaker services, transportation facilities, recreation, and meal programmes. These services were not provided to old people living in nursing homes (Statistics Canada, 2003). Figure 10 reports the percentage distribution of volunteer events and total hours by social service organization. The services provided to elderly people represented 9 per cent of 90

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the total social service hours and 7 per cent of the social service volunteer events.

Figure 10. Distribution of volunteer events and total volunteer hours by social service organization. From Voluntary Social Service organization in Canada: Public Involvement and support. (http://www.donetbenevolat.ca/files/giving/en/n-r3.pdf).

4.3. Impact of informal care and voluntary assistance While volunteering is frequently reported as having a positive impact on the well-being of the volunteer (Musick & Wilson, 2003; Morrow-Howell et al, 2003), and informal care is often considered to be a burden or strain for the caregiver (Schulz & Martire, 2004; Schumacher et al, 2006; Carretero et al, 2009, little is known about the impact on the care recipient or on the health care system. The purpose of this part of the literature search was to investigate whether the voluntary assistance and informal care were evaluated, quantified, and validated in terms of its impact on the elderly person‟s wellbeing and on the health system organization. 91

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Search results for scientific studies published in 2000–2009 in peer-reviewed journals from Sweden, Italy, the UK, and Canada are summarized in Table 9. Table 9. Search results concerning impact of voluntary assistance or informal care on the elderly persons’ wellbeing or the health system in Sweden, Italy, UK and Canada. Number of titles found (in parenthesis; F), number of articles appropriate to the topic and evaluated (E), and number of included articles due to the medium/high quality score (in bold; I). Sweden

Italy

Keywords

United Kingdom F E

Canada

F

E

I

F

E

I

I

F

E

(3)

0

0 (1)

0

0 (29)

0

0 (120)

3

(9)

1

1 (8)

0

0 (109)

0

0 (39)

0

(1)

0

0 (1)

0

0 (8)

0

0 (7)

0

(0)

(1)

0

0 (9)

1

1 (50)

0

(0)

(0)

(2)

0

0 (2)

0

(0)

(1)

0 (33)

0

0 (33)

0

(0)

(0)

(5)

0

0 (1)

0

0 (32)

0

0 (26)

2

PubMed Impact informal care well being elderly Impact and informal care Impact and informal assistance Impact informal care and health system Impact informal care well being care recipient Impact informal care and health system organization Impact informal assistance and health system organization Informal care and health system organization Impact and voluntary assistance and health system organization impact and voluntary assistance

(8)

3

2 (1)

0

0

(0)

(0)

(5)

0

0 (1)

0

(0)

(0)

(48)

0

0 (4)

0

92

I

Systematic search of literature: results

Sweden

Italy

Keywords F

Web of Science Impact informal care well being elderly Impact informal care Impact voluntary assistance health systems Impact and voluntary organization Impact and voluntary assistance Impact and informal assistance Impact and informal care and health system organization Impact and informal assistance and health system organization

E

(0) (12) (0)

I

F

E

(0) 1

(0)

0 (11) (0)

1

(0)

(1)

0

0 (0)

(1)

0

0 (1)

0

I

United Kingdom F E

Canada I

F

E

(8)

0

0 (4)

0

0 (33) (0)

6

1 (15) (0)

0

(105)

0

0 (2)

0

(31)

0

0 (3)

0

0 (2)

0

0 (1)

0

(0)

(0)

(1)

0

0 (0)

(0)

(0)

(2)

0

0 (0)

Sweden Table A5 in Appendix A describes the studies that evaluated the impact of informal assistance on the elderly person‟s wellbeing and on the health system organization. The table includes information on study population, drop-out rates, the age of participants, ascertainment of informal care, measures of well-being of old people, measures of health system organization, covariates, results, and conclusions. Our search of the literature only found a small number of Swedish studies, published from 2000 to 2009, that investigated informal assistance in terms of its impact on the elderly person‟s well-being and on the health system organization in Sweden. Two studies (Hellström et al, 2004; Hellström & Hallberg, 2004) examined the quality of life of the elderly person receiving formal and informal care. Quality 93

I

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of life was independent of the person who provided the care. Another study indicated that moving to institutions or sheltered accommodation was less likely among old people who were cared for by family members (Hallberg & Lagergren, 2009). This result was confirmed by a quasiexperimental study that found a prolonged time to nursing home placement for subjects receiving psychosocial family care (Andrén & Elmståhl, 2008). One study (Andersson et al, 2003) estimated the costs of informal care, which were at least 1.2 times higher than the estimated costs of formal care. The authors concluded that studies excluding the cost of informal care substantially underestimated the costs of old-age care paid by society. Reports A report from the Swedish Board of Health and Welfare (Wimo et al, 2007) estimated the costs of dementia care, including informal care. In the report the authors stated that the question how the informal care should be priced is problematic and controversial since it is partly carried out by people of working age (usually the children of the person with dementia) and partly by people who are retired (often a spouse or sibling). Their main assumption, based on the pooled databases of the Kungsholmen and the Nordanstig Projects, was that two thirds of the care was carried out by the spouse and one third of the children. A weighted hourly cost was then estimated at SEK 91 per hour. Of the estimated yearly cost per demented person (SEK 352,000), 9 per cent was accounted for by informal care. However, if all informal ADL and supervision care provided by informal carers were suddenly to cease and be substituted by formal care, the cost of dementia care would rise substantially from SEK 352,300 to SEK 632,400 per year.

Italy The literature search for studies investigating quality of life or nursing home placement in relation to type of assistance 94

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provided to elderly persons in Italy resulted in only two articles (Bilotta & Vergani 2008; Bilotta et al, 2009). As both studies were based on very small samples, they did not reach the medium/high score in the quality index that was necessary to be included in this review. However, we will briefly summarize their results, given that no other studies were available. Bilotta and Vergani (2008) studied 100 elderly outpatients with their private aids and 88 carers in Milan, Italy. When participants were asked to describe the quality of private care received, it was described as optimal by 59 per cent of the recipients and fair by 14 per cent. Good language skills and nondistressing life conditions of private aids were correlated with an optimal quality of care. Bilotta et al. (2009) studied the risk of nursing home placement in a one-year follow-up of 100 elderly community dwelling outpatients. Nursing home placement and hospital admission were more frequent among those elderly persons who perceived the received part-time or full-time private care as poor or fair in comparison with persons who were happy with the private assistance.

United Kingdom The literature search for peer-reviewed articles on the effect of informal care or voluntary assistance on the elderly person‟s well-being or on the health system organization in the UK did not lead to any result. Reports Searching through the websites of national organizations such as Carers UK, we found a report prepared by University of Leeds (Carers UK, 2007), which provided updated estimates of the costs of unpaid care, published first by Carers UK in 2002 in Without us: Calculating the value of carers’ support. The 95

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economic value of the contribution made by carers in the UK was GBP 87 billion per year, which exceeded total government spending on the National Health Service (NHS; Table 10) and was several times the spending on social services. Annual spending on the NHS in England was GBP 82 billion in 2006/7, and the annual social services costs of local authorities was GBP 19.3 billion in 2005/2006. Table 10. Estimated costs to replace the unpaid care provided by carers, by weekly hours of care, in UK, according to L. Buckner and S. Yeandle 2002 Average hours/week of

Cost of replacement care

provided informal care

(GBP billion)

50+ hours

47.02

20-49 hours

17.39

1–19 hours

22.59

TOTAL

87.01

Canada The literature search for peer-reviewed articles concerning the effect of voluntary assistance or informal care on the elderly person‟s well-being or on the health system organization in Canada identified only one study (Hollander et al, 2009), (Table A6, Appendix A). This study estimated the imputed costs of replacing the unpaid care provided by Canadians to old people. Hollander et al. deemed the most appropriate cost estimate to be the same as the cost of homemakers at the hourly market rate. Based on their calculations, the estimated imputed cost of carers aged 45–64 and 65 years and older would be about CAD 24 billion using 2007 unit costs for homemakers. Based on these figures, an estimate of the 96

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imputed economic contribution of unpaid carers in Canada in 2009 would be CAD 25–26 billion. Reports In a substudy of a report prepared for the Health Transition Fund, Health Canada, Fassbender (2001) examined the relationship between the amount of formal home care services received by clients, and the amount of informal (family) support available to them. Data from 4,962 long-term clients receiving services from the Capital Health Region in Edmonton, Alberta, were used to quantify the economic relationship between formal and informal services. In this study, client welfare was measured by independence (institutional free days). The study showed that increasing the capacity to provide informal care (family support) did not generate savings to the formal care sector. In general, if a client got more of one type of care, he or she also received more of the other type of care. Thus, increasing formal care did not decrease informal care. An overall increase of CAD 1.00 in informal care had a commensurate increase of CAD 1.09 in formal care, while an increase of CAD 1.00 in formal care had a commensurate increase of CAD 0.30 in informal care. For higher levels of care, increases in informal care still elicited significant increases in formal care, but increases in formal care only elicited modest increases in informal care. Fassbender concluded that formal and informal care were complementary, not substitutive. The study did not measure the impact of informal care on the well-being of the care recipient.

Comparative studies and reports Studies concerning the impact of informal care or voluntary assistance on the care recipient were generally scarce, and this was also the case for comparative studies. Only one peerreviewed study that addressed impact issues was found 97

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(Cooper et al, 2006). The AdHOC project focused on elder abuse measured by a structured validated instrument included in the interRAI assessment. The highest occurrence of possible abuse was found in Italy and Germany, which may be due to the higher levels of dependency of participants still cared for at home in these countries as a result of differences in culture and service provision. Moreover, a comparative report from the European commission (Special Eurobarometer, 2007)investigated a population of Europeans aged over 14 in the European Union member states (N = 28,660) and examined their views of becoming dependent upon the help of others. In Sweden the majority preferred to be in their own home with help of relatives (34%), and almost 29 per cent preferred help from a professional care service in their own home. In the UK and Italy, the preference for family care was larger (44%) than in Sweden.

Chapter summary In general, the literature gave few answers to whether voluntary assistance and informal care had any impact on the elderly person‟s well-being and on the health system organization. In Sweden, quality of life among elderly care recipients was not influenced by the type of carer in the few studies found, regardless of whether the care was provided by formal or informal sources. Informal care, however, could delay moving to an institution. In Sweden, the UK, and Canada, researchers have tried to evaluate the cost of informal care. A Swedish study showed that when the costs of informal care are not taken into account, the costs of old-age care in a society are largely underestimated. How to properly calculate the price of informal care is controversial, however, since the care is provided in part by people of working age and partly by 98

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retirees. A Swedish report estimated the costs of dementia care and found that approximately 9 per cent of the total costs were accounted for by informal care. But if all ADL and supervisory care provided by informal carers were suddenly to cease and be substituted by formal care, the total cost of dementia care would nearly double. In the UK, the economic value of the contribution made by carers exceeded total government spending on the NHS, and was several times the spending on social services. The report revealed just how crucial carers are, not only to the health and social care system but also to the economic system in the UK. An estimate of the imputed economic contribution of unpaid carers in Canada, in 2009, equalled CAD 25–26 billion. Finally, it is likely that increasing the capacity to provide informal care (family support) does not generate savings to the formal care sector.

99

Discussion and conclusion

5

Discussion and conclusions

This report is primarily based on a systematic review of the scientific literature concerning qualitative and quantitative aspects of informal care and voluntary organizations. We have examined all studies reporting the occurrence of informal care and voluntary assistance to old persons, as well as its impact on the elderly person‟s well-being and on the health system organization. We have not covered the vast field of caregiver burden and caregiver support, but have kept the focus on the elderly persons receiving the care and assistance. For the purpose of this literature review, we have read and evaluated all the detected scientific articles extending over several disciplines such as epidemiology, sociology, social science, gerontology, geriatrics, health and caring sciences, health economics, and political science. In spite of this broad search strategy that retrieved a high number of original articles, only a few papers were relevant to our aims. A number, though small, of papers reported the prevalence of informal care in Sweden and the UK, while relevant studies were less numerous for Italy and Canada. Studies on the amount of voluntary assistance directed to elderly persons were scarce for all four countries. Finding studies examining the impact of informal care and voluntary assistance on the well-being of the elderly persons and on the health system organization was even more difficult.

100

Discussion and conclusion

When searching for studies and other material on the topic of informal care, we encountered various concepts such as informal assistance, informal care, and informal help. Moreover voluntary care, voluntary assistance, voluntary organizations, and nonprofit organizations are examples of terms used for work performed by volunteers. It has been hard to know whether the concepts are comparable, as they have not been defined in all the studies and reports. This report uses the same concepts used in the original studies. Concepts may not be defined the same, making comparison difficult. We therefore also looked for comparative studies and reports. Finally, it is important to remember that informal care and voluntary assistance are clearly different phenomena that cannot be lumped together. We have given them different chapters and discuss the findings accordingly.

Informal care After examining all studies with a medium-high score in the quality index, we can summarize the findings as follows: The prevalence of informal care varies both within and between countries. In Sweden, approximately 60–70 per cent of elderly persons who need help with ADL receive informal care. Based on only one study in Italy, the prevalence of informal care was much higher, as almost all Italians 65 years of age and older had access to informal carers. In the UK, the prevalence was higher than in Sweden: 80–85 per cent of dependent persons aged over 65 received informal care. In Canada, older adults who received help because of long-term health problems obtained three quarters of that help from informal sources. 101

Discussion and conclusion

Among the few comparative studies that were available for Europe, the above distribution pattern was confirmed, thus supporting the idea of a north-south gradient in Europe that has been characterized by stronger family ties in the south and weaker in the north. There are, however, indications both in Sweden and the UK of a rising prevalence of informal care, suggesting that family members increasingly shoulder the bulk of care. On the contrary, in the most “informal-care intensive” country, Italy, there are some signs of decreasing willingness to contribute to informal care. Data from Sweden and Canada showed that old people who needed more personal care were more likely to receive this help from formal care sources or from a mix of public and family support. There appears to be a number of core areas of informal help. In Sweden, Italy, and the UK, the most frequent kind of help was emotional and psychological support followed by domestic care and transportation. In Sweden and Italy, financial management and organizing and managing care/support were also common activities. In Canada the most frequent kind of help provided by carers was emotional support and transportation/running errands, followed by domestic work. Canadian studies focused on the influence of the social network size on the amount of informal care provided to old people. As network size increased, care recipients got additional hours of care, help with more tasks, and more help with each task. The literature provided few answers to whether informal care had any impact on the elderly person‟s 102

Discussion and conclusion

well-being. Only two Swedish studies addressed this issue and found that quality of life among elderly care recipients did not differ depending on formal or informal sources. Two other Swedish studies indicated that informal care or interventions to family caregivers could delay moving to an institution. This may imply a longer time of independent living for the elderly person as well as a more optimal use of scarce public resources. Informal care also implies costs to society, although it is often ignored. Studies that exclude the cost of informal care may substantially underestimate the costs of old-age care for the society. One Swedish study found that the costs of informal care provided by relatives to patients in advanced home care were at least 1.2 times higher than estimated formal carer costs. In the UK, the economic value of the contribution made by carers was estimated to exceed total government spending on health and equal several times the spending in social services. Pricing informal care is controversial, however, since it is carried out partly by working-age people and partly by retired people. A Swedish estimation of the costs of dementia care found that approximately 9 per cent was accounted for by informal carers. Yet, if all informal care for ADL needs and supervision were to cease and be substituted by formal care, the total cost of dementia care would nearly double.

Voluntary assistance After examining all studies with medium-high score in the quality index, we can summarize the findings as follows: 103

Discussion and conclusion

It was difficult to find scientific information about the proportion of elderly persons in the selected countries that received voluntary assistance. The only data available (in Sweden) indicated that merely a small percentage received help from a voluntary organization. Data on volunteering was more frequent. Approximately half of the population in three countries, Sweden (50%), the UK (59%), and Canada (46%), help others through a volunteering organization. It would be risky to compare these figures for the different countries, however, since the surveys were conducted in disparate ways. It was generally difficult to obtain figures on how much of the total volume of volunteering activities was directed to helping elderly persons in the four countries. In Sweden there are no such figures. In Canada, 11 per cent of the nonprofit and voluntary organizations reported serving old people, but it was not clear whether the services were free, were paid for by the government, or were paid for by the care recipients. In Italy, the voluntary sector accounted for 9.4 per cent of the help provided to elderly people if they were self-sufficient and 2.2 per cent if they were dependent. In the most volunteering-intense country, Canada, there were signs of decline in volunteers hours per capita over the years. Fewer people are carrying out the same amount of work done in the past. The composition of the volunteer work force has also changed, with the remaining volunteers being older, less educated, and less time-stressed.

104

Discussion and conclusion

Issues for the future As illustrated in the projection graphs at the beginning of this report, the number of elderly people will rise and the old-age support ratio will decrease in Sweden as well in Italy, the UK, and Canada. These demographic changes will undoubtedly create increased pressure on the resources for elderly care. Looking for new strategies to deal with the growing demands, decision makers in several countries have directed attention towards informal care and voluntary assistance. Finding or suggesting solutions to these problems is beyond the scope of the present literature report. In writing the report, however, we have come across some important issues which may be useful to discuss in the future organization of old-age health care. Since the 1990s, old-age assistance by family members has increased in Sweden. Have we already reached the maximum amount for informal care that spouses and children can provide to the care of a dependent relative? Or can this sector of old-age care be further extended by improving caregiver support? Formal old-age care is more often performed by women, and this appears to be the case also for informal care. Although we only investigated four countries, we could detect a clear pattern of higher prevalence of informal care in countries with lower employment rates for women. How will these relations develop in the future if more women enter the workforce? The Swedish voluntary sector is strong and does not show any sign of fading. Can some of that engagement be directed towards more assistance for old people? If so, what are the benefits and dangers of these changes? We have reported patterns of younger old people helping older old people. This may be a good solution, and volunteering has been shown to have a positive effect on the well-being and meaningfulness of the volunteer. But how can 105

Discussion and conclusion

we manage issues such as insurance, confidentiality, and security for the care recipient? Are volunteering helpers aware of the early signs of dementia, depression, or inappropriate medicine intake? What about continuity in care? Informal and also voluntary care often involves emotional support and light domestic care and transportation. When ADL needs become personal the prevalence of informal care tends to decrease and formal care or a mix of public and family support becomes more common. Is it possible to define specific areas of responsibility that are most suitable for informal and voluntary care? Studies evaluating the impact of informal care or voluntary assistance on the elderly person‟s well-being are scarce. From what sources do elderly persons prefer to receive help? Do their preferences differ due to factors such as gender, age, cultural background, ADL needs, or tasks? All these questions need to be addressed with the appropriate methods in studies with a good representativeness of the elderly population. This means that we need more research but also more exchange of information and experience, more integration between different actors, more initiatives, and more attention and focus on these issues. The sociodemographic changes we are experiencing will continue to challenge us throughout this century, but they may also inspire a new way of taking care of all people in need of help, including old people.

106

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122

Attachment A

Attachment A Table A1-A7 Prevalence of informal care in Sweden, Italy, the UK, and Canada. Only population-based studies with moderate/high quality, published in 2000-2009, are included.

123

124

Sundström et al, 2002

Larsson & Thorslund, 2002

Reference

75+

N (in 1994) = 1,379 N (in 2000) = 1,466

National surveys of elderly, living in their own homes

82+

30%

4%

Kungsholmen Project

N = 520 elderly living in ordinary dwellings in an urban area

Dropouts

Project name Study population Age

Help in 10 ADL items

2000 Informal care 66% Informal + formal care =16%

1994 Informal care = 59% Informal + formal care = 13%

Home help and/or informal care = 69% (men 78%; women 66%)

Practical chores at home

Interviews

Informal care = 60% (men 73%; women 57%)

Percentage receiving help or giving help (Amount of time spent)

Interview by nurses

Ascertainment of informal care Type of assistance

Informal care increased from 60% in 1994 to 70% in 2000.

Elderly men had higher odds of receiving care compared to women after controlling for physical and cognitive impairment and self-reported needs of assistance with IADL. After controlling also for coresiding the gender differences disappeared. The main differences were found between persons living alone and person coresiding.

Results and conclusions

Table A1. Population-based studies evaluating the prevalence of informal care among elderly persons in Sweden

PREVALENCE OF INFORMAL CARE IN SWEDEN, ITALY, THE UK AND CANADA ONLY POPULATION-BASED STUDIES WITH MODERATE/HIGH QUALITY, PUBLISHED 2000–2009, ARE INCLUDED.

Attachment A

Attachment A

125

Meinow et al, 2005

Nordberg et al, 2005

Davey et al, 2005

Hellström & Hallberg, 2004

65+

N = 943, urban home help recipients

Swedish National Study of Ageing and Care (SNAC-K)

75+

N = 740, rural population

KungsholmenNordanstig Project

75+

N = 1,378, representative sample

Swedish Ageing at home (AH) national survey

75+

N = 1,248

Randomly selected ADL dependent elderly in southern Sweden

10.4%

6%

N.R.

33%

IADL or ADL (help at least once a week)

Care managers’ assessments

ADL/IADL activities

Resource utilization in the dementia instrument (RUD)

IADLs (housework, meal preparation shopping) and PADL

Self-report of help with ADL or PADL by family, friends or volunteers

Help with IADL or IADL + PADL

Questionnaire covering IADL and PADL needs and eight questions of quality of life (QoL)

Informal care = 42%

Formal care = 20%

Informal + formal care = 48%

Informal care only = 38%

Formal care only = 11.8

Informal + formal care = 8%

Informal care only = 22%

Informal + formal care = 39%

Formal care only = 14.%

Informal care only = 45,%

Income and regular access to informal care were not significant predictors of received home help; that was mainly related to need indicators.

The amount of informal care was greater than formal care, and greater among demented than nondemented.

Three groups of individuals with low, moderate, and high risk of 1-year institutional placement were identified in a US and a Swedish sample. Those with high placement risk received more formal and less informal assistance in Sweden relative to the US.

Informal help was more common among elderly persons who had less extensive ADL impairment and no public care.

Recipients receiving help from a combination of informal and formal carers were older, were unable to stay alone at home, and had significantly more help with IADL and PADL.

Attachment A

Karlsson et al, 2008

Larsson K, 2006

Sundström et al, 2006

126

65+

N = 1,958, urban and rural home help recipients

Swedish National Study of Ageing and Care (SNAC) Skåne

65+

N (1988/89) = 3,583; N (2002/03) = 3,267 living in ordinary dwelling

Undersökning om levnadsförhållanden (ULF)

65+

N(2002/03) = 3,552

Undersökning om levnadsförhållanden (ULF)

11%

25%

16%

IADL and PADL

Questionnaires administered by staff

IADL and PADL

Interview

IADL and PADL

Interviews

Municipal and informal care = 34%

Of women 80+ living alone and reporting need for one or more ADL, 70% had informal care

Of men 80+ living alone and reporting need for one or more ADL, 60% had informal care

Of 65+ persons cohabiting, 14% had informal care

Of 65+ persons living alone,18% had informal care

Among the persons receiving help with IADL + PADL: Informal care only = 35% Both informal and formal care = 44%

Among those who received help only with IADL: Informal care only = 63% Both informal and formal care = 17%

The results indicate that there is a shift from the substitution to the complementary model.

The frailest individuals living at home were cohabiting and received a combination of formal and informal care, while those who were less dependent mainly had help with IADL from municipal care only.

Women, who were 80+ years old, with ADL limitations and living alone, received less home help and more informal support in 2002/03 in comparison to 1988/99.

The majority of older people in need of care rely on help only from family but many are helped both by family and state. Whether an old person receives both formal and informal care is likely to depend on care needs: the larger the need, the more likely that both formal and informal care will be provided.

Attachment A

Jegermalm & Jeppson Grassman, 2009

Lamura et al, 2008

16–84

N = 2,000

Swedish representative sample in 2005

65+

N = 921 family carers (at least 4 hours/week) of community-dwelling older people in 6 European countries

EUROFAMCARE

30%

N.R.

Providing help in housework, transport, gardening, or keeping an eye on someone outside own household

Telephone interviews

Mobility, organization, finances, domestic tasks, psychological support

Common assessment tool

Among 75–84 years old persons: 22% gave help/care on average 21 hours/week

Among 60-74 years old persons: 57% gave help/care on average 20 hours/month

A mean of 37.6 hours (SD = 49.5) was provided per week per carer

Informal care and volunteering are common phenomena in Sweden, and there is no contradiction between the parallel existence of a universal welfare model such as the Swedish health system and an extensive civil society in which older people play important roles as carers.

European Union-wide efforts to improve carer support need to focus on providing timely highquality care delivered by staff and enhance cooperation between health professionals, informal networks, social services, and voluntary organizations.

Attachment A

127

128

Quattrin et al, 2009

Quattrini et al, 2006

The Aged in Home Care project

Carpenter, 2005

75

520 patients admitted to medical and surgery wards; 124 eligible informal carers

Mean: 82

6 European countries with a target sample of 1,000 family carers of communitydwelling older people in each countries

EUROFAMCARE

>65

Semiurban settings in 11 European countries with a target sample of 450 people from each setting receiving home care

Project name Study population Age

Reference

30.6%

N.R.

Relatives or friends helping elderly at home

1%

Care, helping in activities of daily living and in keeping company

Questionnaire administered to informal carers and nurses

A common assessment tool concerning mobility help, organizing support, financial management, domestic tasks, psychological support situation

Home help

Ascertainment of informal care Type of assistance

Dropouts

52.9 hours of care/week

16.5% of patients were assisted by informal carers

Time period of caring: from 8.8% caring for less than one year to 35.3% of caring for 5+ years

A mean of 63 hours was provided per week per carer

Only 3.1% of Italians participants did not have an informal carer

Percentage receiving help or giving help (Amount of time spent)

Most of the carers are willing to continue to provide care to their elderly relatives.

Societies are largely diverse in formal and informal help. Italy is the European country with the lowest percentage of elderly not having informal help.

Results and conclusions

Table A2. Population-based studies evaluating the prevalence of informal care among elderly persons in Italy

Attachment A

129

Hirst M, 2002

Hirst H, 2001

Pickard et al, 2000

Reference

16+

N >5,000

British Household Panel Survey (BHS) annual survey

16+

Representative sample, N >5,000

British Household Panel Survey (BHS) 1991–1998

65+

N = 845

Projections based on the 1994/95 General Household Survey (GHS) elderly data

Project name Study population Age

20.6% in first wave

Provided care for someone who is sick, elderly, or disabled at least 20 hours per week

Provided care for someone who is sick, elderly, or disabled at least 20 hours per week

Questionnaire on informal help by spouse, another household member relative, neighbour, or friend

N.R.

20.6% in first wave

Ascertainment of informal care Type of assistance

Dropouts

One third of coresident carers and 40% of extraresident carers start care each year and in similar proportions cease to provide care. Almost everyone is involved in care at one time or another. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care.

Coresident informal care: 45.8/1,000 (women); 44.0/1,000 (men)

More women than men withdrew from the less intensive care between households while more men than women took on the role of a spouse carer.

The model’s projections suggest that the number of dependent elderly people living at home with informal help will increase by 63%.

Results and conclusions

Extraresident informal care: 123.6/1,000 (women); 86.0/1,000 (men)

Prevalence of care 1998: women ≈ 15%; men ≈ 12.5%

Prevalence of care 1991: women ≈ 17%; men ≈ 12%

2031: 84%

1996: 83%

Percentage receiving help or giving help (Amount of time spent)

Table A3. Population-based studies evaluating the prevalence of informal care among elderly persons in United Kingdom

Attachment A

Dahlberg et al, 2007

Pickard et al, 2007

Carpenter GI, 2005

130

All ages (carers)

N = 1,825,595 carers

Individual Sample of Anonymous Records (SAR) from the UK Census 2001

N = 3,356; 65+

2001/2002 General Household Survey (GHS) elderly data concerning elderly with IADL and ADL needs

450 home care recipients (each setting); 65+

The Aged in Home Care project in 11 European countries

6%

N.R.

19.6%.

Postal survey on provided unpaid care for family members, neighbours, or others who are sick, disabled, or elderly

Help with IADL needs

Questions concerning the carer and his/her relationship with the older person

Help at home

Needs assessed by the resident Assessment instrument (InterRAI )

More than 50 hours/week was spent by 22% of the female carers and by 20% of the male carers

10% of the sample was carers (11% women, 9% men). Participation in care increased with age and peaked at age 45–59 (20%)

86% of disabled persons have informal help

13% of UK home care recipients did not have any informal carer

Informal care is most prevalent in groups that may experience most strain: frail elderly or middle-aged women with multiple roles.

The amount of care increased with age for both men and women. This pattern was reversed among 70+ who were a higher proportion of men.

Reliance on care from children may be more extensive in England than previously been identified at least for disabled older people.

Societies are largely diverse in formal and informal help.

Attachment A

Del Bono et al, 2009

Lamura et al, 2008

McGee et al, 2008

131

N = 275,832 65+

Individual Sample of Anonymized Records (SARs) drawn from the 2001 UK Census

N = 995; 65+

EUROFAMCARE in 6 European countries concerning family carers (at least 4 hours/week) for community-dwelling older people

65+

N = 2,033

Cross-sectional community-based population survey. (Republic of Ireland and Northern Ireland)

6%

N.R.

32%

Postal survey on provided informal unpaid care (any help or support to family members, neighbours or others who are sick, disabled, or elderly)

Common assessment tool inquiring mobility help, organizing support, financial management, domestic tasks, psychological support

Face-to-face interview about need of help in 17 daily tasks in 8 activity categories, and unpaid regular care for family member or friend with long-term illness, health problem or disability, in last 12 months

12% of 65+ persons provides informal care: 13% of men and 11% of women versus 13% of men and 18% of women in age group 30–64

A mean of 50.6 hours (SD = 62.3) per week

12% of the total sample classified themselves as carers

49% of the total sample had received informal care from at least one source over the last 12 months

Men have a higher probability of becoming carers among people aged 65 and above, men after controlling for marital status women have higher odds of caring than men, (OR:1.12; 95%CI:1.09–1.15).

European Union-wide efforts to improve carer support need to focus on providing timely high-quality care delivered by staff, and enhance cooperation between health professionals, informal networks, social services, and voluntary organizations.

The balance of formal and informal health and social care will become increasingly important as populations ages.

Levels of informal care were higher than reported in single-item national census questions.

Attachment A

132

Keating & Fast, 2000

Stobert & Cranswick, 2004

Lafrenière et al, 2003

Reference

65+

N = 1,366 respondents,

General Social Survey 1996

65+

N = 24,870

General Social Survey 2002

65+

N = 1,089 In private households

General Social Survey 1996

Project name Study population Age

14.7%

Self-reported help given by carers to people over 65 with long-term health problems or physical limitation

Inside activities, outside activities, transportation, personal care

Computer assisted telephone interviews on assistance received in past 12 months

Average 5 hours/week for monitoring, meal preparation, shopping, transportation, housekeeping, personal tasks

Carers aged 65+ spent on average 27.9 hours per month providing informal help

Carers aged 45–64 spent on average 22.9 hours per month providing informal help

Formal assistance 27% of total amount of help time received that year

Everyday housework, grocery shopping, meal preparation, personal care

16%

Informal assistance 72% of total amount of help time received that yea

Computer assisted telephone interviews on assistance received in past 12 months

14.7%

Percentage receiving help or giving help (Amount of time spent)

Ascertainment of informal care Type of assistance

Dropouts

1.3 million Canadian women cared for one or more senior.

Two main groups provide unpaid, informal care for seniors with longterm disability: 1) middle aged children helping their parents, average age 54 years old; and 2) seniors who are looking after a spouse, close friend or neighbour, average age 73 years old.

For those relaying on only formal care, having no surviving children and being disabled were the factors influencing the number of hours of assistance.

Among seniors relying only on informal sources of assistance, living arrangements and age were major influences on the number of hours of help they received.

Results and conclusions

Table A4. Population-based studies evaluating the prevalence of informal care among elderly persons in Canada

Attachment A

Keating & Dosman, 2009

Keating et al, 2008

Fast et al, 2004

133

65+

N = 2,407

General Social Survey 2002

65+

N = 2,407

Data from General Social Survey on Ageing and Social Support 2002 conducted by Statistics Canada

65+

N = 1,104 seniors

General Social Survey 1996

16.2 %

16.2%

14.7%

Meal preparation or clean-up, housekeeping, household maintenance or repair, shopping, transportation, help with banking or bill paying, personal care.

Care recipients reports

Meal preparation or clean-up, housekeeping, household maintenance or repair, shopping, transportation, help with banking or bill paying, personal care

Care recipients reports

Meal preparation, shopping, housekeeping, transportation, household maintenance or repair, assistance with banking or bill paying, personal care, and emotional support or checkup

Care recipients reports

Network with spouse and children provided most hours of care, between 8–10 hours per week; friend-and family networks provided between 2.9 and 6.9 hours per week

Networks with no employed members carried out on average 9 hours of care per week and 3 tasks Three of six care-network types were almost entirely based in close-family relationships. All had more than 80% close kin. The highest proportion of network caring without formal services is among the close-family networks.

Among all three types of care networks studied, relatively few family members are actively involved in providing care for the frail older family member. Mixedemployment networks are the most common.

Networks with all members employed provided fewest hours of care, 6 hours per week and a range of 2 care tasks Mixed-employment networks provided 15 hours of care per week and carried out a range of 4 care tasks

Network characteristics strongly influenced the amount of care received, especially network size. As network size increases, recipients get additional hours of care. Average network size was 2 members.

Seniors whose entire care network lived in the same household obtained about 9.2 more hours care weekly than seniors who did not have network members living with them

Attachment A

Hellström & Hallberg, 2004

Stratified sample from 33 municipalities in southern Sweden

Hellström et al, 2004

134

33%

N = 1,248 among which 448 care recipients; 75+

Randomly selected ADL dependent old people in southern Sweden

47%, verified by telephone

N = 8,500; 75+

Cross- sectional

Project name Study population Age and drop-outs

Reference

Questionnaire covering IADL and PADL needs

Self-report of help in ADL

Ascertainment of informal care

Help with IADL or IADL + PADL from informal and/or formal carers

8 questions on quality of life (QoL)

Short Form health survey (SF12), a shorter version of the SF-36

Life-quality Gerontolog y Centre (LGC) scale

Measures of wellbeing -

Measures of health system organization Age, sex, civil status, selfreported diseases, social network, type of helper

Covariates

High QoL was not significantly related to the help provider, but was related to higher age, living with someone, less complaints, and managing to be alone at home. Age, number of children, number of complaints, the ability to stay/live alone at home was a good predictor of help from different kinds of care. Recipients of informal care were younger, more often married or cohabiting while those receiving both informal and formal care had more help with IADL + PADL.

Greater ADL need, more self-reported disease, and complaints determined low QoL, while social network (contact with more than 3 people) and greater age determined high QoL. Type of care helpers did not influence QoL.

Results and conclusions

Table A5. Population-based studies evaluating the impact of informal care on elderly persons’ well-being or impact on the health care system in Sweden

Attachment A

Hallberg & Lagergren , 2009

Andrén & Elmståhl, 2008

Andersso n et al, 2003

135

12.3%

N = 1,810; 75+

Follow-up study

Kungsholmen Project

6%

N = 308; 70+

Control group: 155 family carers of persons with dementia

Intervention group: 150 family carers of persons with dementia

Quasi-experimental study consisting of

0%

SD = 15

Mean age = 72

N = 451

Patients in advanced home care in the county of Östergötland, Sweden

Reports on cohabitation, but data on support from children were not available

Only carers included in study; intervention consisted of education (5 weekly sessions, 2 hours + weekly support group, 1.5 hours, for 3 months

A standardized questionnaire about background, diagnosis, time spent giving care by home care providers, home help service and informal care

Living accommodations: ordinary home, special houses with some home help and home health care; special houses with continuous care

Number of days until nursing home placement

Costs estimated as lost gross value during time absent from usual activities

The amount of informal care was recorded on a 5-grade scale

Age, sex, ADL scores

Patient age, gender, carer age, and gender, Katz index, Berger scale, total burden, subjective health

Gender, age, housing, diagnosis

There was a stabilizing effect of the availability of informal care support, which decreases the probability to move from the current care mode.

A greater delay of institutionalization was found when intervention-group carers were daughters (p = 0.028).

There were significant delays (6 months) in nursing home placement, and a longer time at home for persons with dementia with adult children as carers in the intervention group compared to the control group at follow-up (p = 0.004).

Studies that exclude the cost of informal care substantially underestimate the costs to society of providing help to seniors.

The mean cost of informal care was SEK 5,880 per week per patient when leisure time was included. When leisure time was excluded the mean cost was SEK 3,410 per week per patient, which is still 1.2 times higher than estimated formal carer costs.

Attachment A

Bilotta et al, 2009

Bilotta & Vergani, 2008

Reference

136

Median:84

100 elderly community dwelling outpatients

5%

Median age :84

100 elderly outpatients with their private aids and 88 carers in Milan, Italy

Project name Study population Age and Drop-outs

Participants had been receiving part-time or fulltime private care for at least 1 month

Participants had been receiving part-time or fulltime private care for at least 1 month and the carers visited the care recipients at least once a week

Ascertainment of informal care

Participants were asked to describe the quality of private care received by choosing one of four options: poor, fair, good, and optimal

European Quality of Life Visual Analogue Scale score

Participants were asked to describe the quality of private care received by choosing one of four options: poor, fair, good, and optimal

Measures of well-being

Nursing home placement and hospital admission

-

Measures of health system organization

Sociodemogr aphic characteristic s and function assessed only at baseline

Sociodemogr aphic charact., function, cognition, depression, morbidity, pharmacothe rapy

Covariates

Elderly people belonging to the poorer-fair care group showed a higher risk of nursing home placement compared to those in the optimal or intermediate group (RR = 5.2;1.7-16.0).

Good language skills and nondistressing life conditions of private aids were correlated with an optimal quality of care.

The quality of care was described as optimal by 59% of elderly persons and poor or fair by 14% of them. The score of the EuroQol VAS increased from the poor group to the optimal one.

Results and conclusions

Table A6. Population-based studies evaluating the impact of informal care on elderly persons’ well-being or impact on the health care system in Italy

Attachment A

Hollander et al, 2009

Reference

137

16%

Age group 65 + N = 1,026

Age group 45–64 N = 2,985 respondents

2002 General Social Survey conducted by Statistics Canada

Project name Study population Age and Drop-outs Measures of health system organization Estimate of the imputed economic contribution of unpaid carers for Canada for 2009

Ascertainment of informal care The types of care and frequency of care provision are provided by carers in dyad

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Covariates

Unpaid carers contribute much to Canadian society, its economy, and the well-being of its citizens.

Results and conclusions

Table A7. Population-based studies evaluating the impact of informal care on elderly persons’ well-being or impact on the health care system in Canada

Attachment A