ORA (Round 5): How are varying care systems associated with inequalities in care and wellbeing in later life?

Lead Research Organisation: King's College London
Department Name: Gerontology

Abstract

Ageing societies and recent reforms to long-term care (LTC) in many European countries are likely to make informal care by kin and nonkin increasingly critical for fulfilling the care needs of older people. To date, it is unknown whether informal care falls disproportionately on disadvantaged populations, and the consequences for the wellbeing of care recipients and their carers are poorly understood. The proposed research examines if and how LTC reforms exacerbate existing social disparities in care and in caregiver and care recipient wellbeing. To this end, this project compares the socioeconomic status (SES) gradient in formal and informal care and its impact on wellbeing across Europe and Japan. This objective is studied a) in context (across nations and regions with different care systems and within countries over time) using an updated set of indicators of LTC policies; b) from the perspectives of both the care recipient and the informal caregiver; c) through a focus on quality of care; and d) by carrying out policy evaluation natural experiments. A better understanding of the consequences of different care policies for inequalities in care, and caregiver and care recipient wellbeing, will inform debate on the potential impact of future policy decisions. The project team combines expertise on LTC arrangements, informal care, and cross-national analyses from demographic, sociological, gerontological, epidemiological and health economic perspectives.

Planned Impact

Our key aim is to benefit older people's wellbeing by increasing our understanding of how specific LTC policies influence socioeconomic inequalities in care among older adults, the consequences of these inequalities for the wellbeing of older care recipients and their caregivers, and by identifying policy levers for change. Findings from our research project will be of national and international importance and will benefit a wide variety of stakeholders as outlined below.

First, our research will be of interest to many in the gerontology, demography, social epidemiology, sociology, health economics and social policy academic communities as it will lead to significant theoretical and policy contributions by providing new understandings of inequalities in the critical areas of informal and formal care and their consequences for older people's well being. In addition to the academic community, our project findings on inequalities in (in)formal care will provide a rigorous scientific evidence base for NGOs and other organisations lobbying government on behalf of older people and carers. For instance, groups such as Age UK, the Centre for Ageing Better, Carers UK and the OECD, will benefit from this evidence to lobby national and EU policymakers to inform policies to address and reduce later life inequalities. A significant asset of our project is that we will systematically develop and test hypotheses about which type of LTC policy is either negatively or positively associated with inequalities in the use and provision of care. For example, some measures, like public care services, may crowd in family care in all SES groups, whereas other measures, like cash-for-care schemes, may crowd out family care only among those in the higher SES-groups.

Our findings will also be of interest to politicians working on older people's issues in relevant All-Party Parliamentary Groups (e.g. Ageing and Older People), Go-Science (the organisation which advises the UK Government on policy), government (e.g. the Department of Health, DH; the Department for Work and Pensions, DWP), local authorities, and independent policy bodies (e.g. the King's Fund) . For example, Go-Science convened a recent experts workshp to gather evidence on informal care for their rapid evidence review.

Our findings on the health and wellbeing consequences of (in)formal care for both the care recipient and caregiver will also inform practitioners working with older people, including those working in local government and in healthcare services (e.g. King's Health Partners) to improve health and care interventions among older people and to reduce inequalities. Most importantly, this research will inform older people and their carers about which specific care patterns (e.g. a mix of informal and formal care) may act to enhance the quality of care in comparison to others (e.g. formal care only), resulting in higher levels of wellbeing, and probably even more so among those in lower SES groups.

The Institute of Gerontology has a longstanding relationship with AgeUK who have agreed to be involved in knowledge transfer and dissemination of the project results to key NGOs, politicians, civil servants, policymakers, practitioners and to older people themselves. In addition to assisting with the project's impact and dissemination strategy, Age UK have also agreed to be attend the stakeholder events in the UK, and to act as a member of the Scientific Advisory Board helping to guide the conceptual development and the policy implications arising from our work. Dissemination will take place formally and informally through these wide networks of policy actors. Formal dissemination activities will consist of a project website which will be hosted by TU Dortmund.

Publications

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Floridi G (2021) Socioeconomic Inequalities in Home-Care Use Across Regional Long-term Care Systems in Europe. in The journals of gerontology. Series B, Psychological sciences and social sciences

 
Description Ageing societies and recent reforms to long-term care (LTC) in many European countries are likely to make informal care increasingly critical for fulfilling the care needs of older people. To date, it is unknown whether informal care falls disproportionately on disadvantaged populations, and the consequences for the well-being of care recipients and their carers are poorly understood. We are investigating if and how LTC reforms exacerbate existing social disparities in care, and in caregiver and care recipient well-being. To this end, we compare the socioeconomic status (SES) gradient in formal and informal care and its impact on well-being across Europe and Japan. This objective is studied a) in context (across nations and regions with different care systems and within countries over time) using an updated set of indicators of LTC policies; b) from the perspectives of both the care recipient and the informal caregiver; c) through a focus on quality of care; and d) by carrying out policy evaluation natural experiments. A better understanding of the consequences of different care policies for inequalities in care, and caregiver and care recipient well-being, will inform debate on the potential impact of future policy decisions.

Progress to date: The project began in April 2019, and initial work focused on 1) setting up two core datasets: Survey Ageing Health and Retirement in Europe (SHARE) and the English Longitudinal Study of Ageing (ELSA), 2) developing a database of LTC indicators, and 3) undertaking statistical analyses. We began with the long and detailed work involved in setting up the key indicators (e.g., informal and formal care receipt) needed across the multiple waves in the datasets. This included conceptualising and operationalising different dimensions of SES. Particular attention was paid to the comparability of the measures created across ELSA and SHARE (as available harmonised data, for example through Harmonized HRS - Gateway to Global Aging, is compatible with the US Health and Retirement Survey and not with ELSA), and across waves. We also explored the use of another comparable dataset, The Irish Longitudinal Study on Ageing (TILDA).

Database of national indicators of LTC policies
The UK team is involved in three work packages. The first focused on creating a cross-national database of key LTC features together with researchers at the Vrije Universiteit Amsterdam. We created a theory-based database of national and where possible regional indicators of key LTC features in European countries between 2004 and 2018. We drew on available data on social care and family benefits from OECD databases and reports, Eurostat, and other macro-level databases collected for analysis together with cross-national individual-level survey data (e.g., Multilinks Database on Intergenerational Policy Indicators, European Social Survey Multilevel Data Collection). We also collected attitudinal data from cross-national European surveys (eg. Eurobarometer, European Quality of Life Survey, and European Social Values Survey). In developing the database, we focused on indicators of specific LTC features reflecting 'supported familialism' (e.g., cash provided to relatives), 'supported defamilialisation through the market' (e.g. tax deductions) and 'defamilialisation through public provision' (e.g. number of beds in residential care, home care services) as they may impact care differently (as developed by Saraceno). We encountered several limitations in constructing the database. First, information on key LTC policies was sparse and comparability a significant issue. Second, our indicators for supported familism and defamilisation through the market were only available for 2 time points. This reduces variance in measures and hampers analyses that aim to relate changes in LTC policies to changes in SES inequality in care. Finally, besides variation over time, information capturing geographical variation is also relatively limited. Especially, regional data is lacking, except for LTC beds. Nevertheless, we believe it is vital to distinguish between different types of LTC policies along the familism/defamilisation continuum as consequences for inequalities in care may differ. We will present this work at the Transforming Care Conference in July 2021, and a manuscript is in advanced stages of preparation.

Exploring the relationship between SES inequalities in care receipt and key features of LTC
We are leading the second work package looking at how wealth and income gradients in the use of informal, formal, and mixed home-care vary according to the degree to which LTC systems offer alternatives to families as the main providers of care ("de-familisation"). We used SHARE data on disabled older adults from 136 administrative regions in 12 European countries and linked them to a regional indicator of de-familisation in LTC, measured by the number of available LTC beds in care homes. We used multinomial multilevel models, with and without country fixed-effects, to study home-care use as a function of individual-level and regional-level LTC characteristics. We found that poorer people were more likely than the wealthier to combine informal and formal home-care use in regions with more LTC beds. This suggests that de-familisation in LTC favours the combination of formal and informal home-care among the more socioeconomically disadvantaged, potentially mitigating health inequalities in later life. The paper was published in the Journals of Gerontology.

We are also exploring a theoretical model of SES inequality in the relationship between care use and well-being which we are testing using SHARE data on functionally impaired Europeans aged 50 and older. We analyse SES moderation in the longitudinal associations between informal and formal care and various dimensions of emotional well-being, including self-appraised control, autonomy, self-realisation, pleasure, and absence of depressed mood. In line with our theoretical model, we find that the negative association between informal care and self-perceived control and autonomy is stronger at lower levels of SES. However, we do not find SES moderation in the association between care receipt and other dimensions of well-being. Our results suggest that the increased reliance on informal LTC across Europe may exacerbate SES inequalities in emotional well-being.

In collaboration with our German colleagues, we are investigating partner care arrangements and older adults' well-being. Once again using SHARE, we examine how life satisfaction and depressive symptoms of caregivers vary across five care arrangements: solo-care; shared formal; shared informal; outsourced formal; and outsourced informal. We explore heterogeneity in this association by gender and across four welfare regime contexts (corresponding to Northern, Western, Southern and Eastern Europe). Three results emerge: first, sharing partners' care with formal providers is associated with lower well-being among women, potentially reflecting stresses arising from inefficiencies in the coordination of care networks. Second, outsourcing partners' care to formal or informal providers is linked with higher well-being among Northern and Western European women, but with lower well-being among women in Southern Europe, where traditional female caregiving roles are more normative. Third, among men, outsourcing partners' care to informal providers is associated with the highest life satisfaction scores in all welfare contexts, possibly due to expanded social networks and relief from caregiving roles.
Evaluating the impact of recent LTC policy reforms in England, Germany, and the Netherlands on inequalities in care
We are also leading work package 5 which evaluates the impact of recent LTC policy reforms on inequalities in care. Using four of the countries in SHARE (Belgium, Germany, France, Spain) we examine the causal effect of public home-care on users' psychological wellbeing and quality of life. Employing individual random-effects with an instrumental variable approach (using variations in eligibility status for LTC programmes as instruments) we find that the use of formal-care reduces depressive symptoms. Our results show that receiving formal home-care significantly reduces depressive symptom scores by 2.2 points (a large effect-size as measured with the Cohen d) and the risk-of-depression by 14 percentage points. The effect is accompanied by a 5.5 percentage-point reduction in the risk of perceived loneliness, and a 16-percentage point increase in the probability of reporting higher than average quality of life CASP scores.

Finally, we are investigating the impact of women's labour force participation on informal caregiving in the years leading up to retirement, and how is it affected by multigenerational care responsibilities. We exploit a unique reform in the UK that increased the female State Pension-age by up to 6 years. We use an instrumental variable approach to account for the endogeneity of labour supply, employing data from Understanding Society. We show that an increase in working time by 10 hours per week reduces the probability of providing intensive care outside the household by 1.3 percentage points. These effects are concentrated among women working in demanding jobs, and among women from the "sandwich" generation. For women with both grandchildren and at least one parent alive, increasing working hours by 10 hours/week reduces the probability of providing parental care by 4 percentage points, an effect significantly larger than observed for women with parents alive but without grandchildren. Additional projects include one on a meta-analysis of 22 studies identifying welfare typologies in relation to health and social care, and on LTC eligibility rules and costs using a dynamic microsimulation model.

Engagement with Potential Research Users
Our stakeholder engagement and dissemination activities have been severely impacted by COVID-19 as many meetings have been cancelled and/or postponed. While we are continuing to engage with our partners, but this has been complicated by COVID-19 as two key contacts are no longer with Age UK (Sujata Ray, Research Manager, and Prof. Jose Iparraguirre, Chief Economist). Where possible we have held meetings online. As listed on Researchfish, our in-person project meeting was due to be held in London from the 24th-25th March 2020 with all project team members and members our Scientific Advisory Board (Prof Nora Keating, Ana Llenanozal from the OECD, and Age UK) but was instead held online on 24 June 2020. We also held an online workshop with the Department for Work and Pensions on 5 June 2020 to discuss project findings and implications. Findings were also presented in a Podcast Research Briefing on 12 October 2020.
We had also proposed opportunities to build capacity by training young scholars through the systematic exchange of researchers, notably through research exchange visits. Due to COVID-19 in-person exchanges were no longer possible and were replaced with online interactions.
Previous in-person meetings include one on progress, preliminary findings, and dissemination strategy with Age UK on 5 September 2019; and a stakeholder roundtable event on 30 January 2020 to discuss the LTC database with stakeholders in social care, ageing and pensions/retirement.

Presentations, Meetings and Conferences
Presentations to the Royal Economic Society Conference, University of Belfast, 6-8 April 2020; Population Association of America Meeting, Washington, D.C. 23-25 April 2020; European Population Conference, University of Padova, Italy, 24-27 June; 25th Nordic Congress of Gerontology, Reykjavik, Iceland, 3-6 June 2020, in symposium 'Informal care, labour market participation and well-being: impacts on the lives of caregivers and care-receivers'; and European Health Economics Conference, University of Oslo, 7-10 July, were cancelled due to COVID-19.

As listed on Researchfish, online presentations include to an ORA-INCARE symposium at the Gerontological Society of America (GSA) Meeting (6 November 2020), and to the Health Economists' Study Group (HESG) UK Health Economics Conference (8 January 2021). We also participated in both in-person and online seminars for the Centre for Longitudinal/KCL Seminar Series on Health, Life Course and Ageing (15 October 2019; 11 Feb 2020). We established an Online IN-CARE Seminar Series where we also presented on 9 December 2020. Prior in-person meetings include Kick-off-Meeting, Vrije Universiteit Amsterdam, Netherlands (17 April 2019).

Future Presentations, Meetings and Conferences
Online presentations to: Understanding Society Conference, March 2021; Royal Economic Society Conference, April 2021; and ORA-INCARE symposium, 'The IN-CARE project: Socioeconomic inequalities in care use and provision across countries and over time', Transforming Care Conference, July 2021 (was to be held in Venice, Italy). Also, to the online IN-CARE Seminar Series, 10 March 2021.
Exploitation Route Still too early as award is still active
Sectors Communities and Social Services/Policy,Healthcare

URL http://in-care.fk12.tu-dortmund.de/
 
Description The impact of Long-Term Care policies on frailty risk for older people in Europe and the UK (Avendano, Carrion, Rapp) - grant King's College London and University of Paris
Amount € 28,000 (EUR)
Organisation University of Paris 
Sector Academic/University
Country France
Start 09/2020 
End 12/2022
 
Title International Database on Long-Term Care Indicators 
Description We are creating an international theoretically informed database of key LTC indicators based on publicly available datasests (e.g. Multilinks, Eurostat, OECD data, Social Policy Indicators, European Quality of Life Survey, Gender Generations Survey, European Social Values Survey and Mutual Information Systems on Social Protection). After the grant this will be made publicly available. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact Still too early as project remains active. 
 
Description Age UK 
Organisation Age UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We have contributed to discussions with respect to the evidence produced by the project on the factors associated with later life work as well as the longitudinal relationship between later life work and health.
Collaborator Contribution Age UK is a member of our Dissemination Strategy Group and Scientific Steering Group. Representatives have contributed to discussions concerning the findings and directions for research.
Impact A dissemination workshop in the autumn has been proposed by Age UK.
Start Year 2014
 
Description OECD 
Organisation Organisation for Economic Co-operation and Development OECD
Country France 
Sector Public 
PI Contribution Knowledge exchange and discussion of potential grant collaborations
Collaborator Contribution Attendance at scientific advisory board meetings
Impact Discussion of collaboration in future data projects to construct theory-based indicators of LTC policies.
Start Year 2019
 
Description Carrino, C., Nafilyan, V., Avendano, M. (2021) 'Should I care or should I work? The impact of working longer on informal care'. Presented by Carrino at International Health Economics Association ConferenceThe Health Economists' Study Group Winter 2021 (6-8 January), Centre for Health Economics in London, London School of Hygiene and Tropical Medicine, United Kingdom (online). 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Spared requests for information and discussion.
Year(s) Of Engagement Activity 2021
 
Description Carrino, C., Reinhard, E., Avendano, M. (2019) 'Stop me from falling: The causal impact of public home-care on the wellbeing of older Europeans'. Presented by Carrino at Centre for Longitudinal/King's College London Seminar Series on Health, Life Course and Ageing (15 October), London, United Kingdom. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact The presentation sparked intense discussion and debate.
Year(s) Of Engagement Activity 2019
 
Description Carrino, C., Reinhard, E., Avendano, M. (2020) 'Stop me from falling: The causal impact of public home-care on the wellbeing of older Europeans'. Presented by Carrino at Online ORA-INCARE Seminar Series (9 December). 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact This sparked intense discussion and debate.
Year(s) Of Engagement Activity 2020
 
Description Floridi, G., Quashie, N., Glaser, K. & Brandt, M. (2021) Partner care arrangements and older Europeans' well-being: Variations by gender and welfare context. Presented at IN-CARE seminar series (Online, 10/03/2021) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Around 15 people will attend, aim is to spark questions and discussion.
Year(s) Of Engagement Activity 2021
 
Description Floridi, G., Carrino, L., Glaser, K (2020) 'Socioeconomic inequalities in home-care use across regional long-term care systems in Europe'. Presented by Floridi at the symposium, 'Socio-economic inequalities in long term care use and provision: Findings from the IN-CARE project', Gerontological Society of America (GSA) Meeting (4-8 November), Philadelphia, Pennsylvania, USA (due to COVID-19) this was held online. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact This event was held online and the audience sparked questions and discussion.
Year(s) Of Engagement Activity 2020
 
Description Floridi, G., Carrino, L., Glaser, K. (2020) 'Socioeconomic inequalities in home-care use across regional long-term care systems in Europe'. Presented by Floridi at Centre for Longitudinal/King's College London Seminar Series on Health, Life Course and Ageing (11 Feb), London, United Kingdom. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact The seminar sparked questions and discussion.
Year(s) Of Engagement Activity 2020
 
Description KCL/DWP Policy Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact On the 5th June 2020 we held an online workshop with DWP (organised by Carrino) where we presented and discussed progress on our analyses of pension reform (extending State Pension Age) and it impact on caregiving. Those in attendance from DWP included Laura Webster (Chief Economist), James Rees (Head of Pensions Porecasting), Michael Payne (Lead for Fuller Working Lives Analysis), Ella Taylor and Benjamin Ashton. The outcome was a discussion about the policy implication of our work and future challenges for public policy and DWP. Part of the issues raised in the discussion was then embedded in the revised version of the paper.
Year(s) Of Engagement Activity 2020
 
Description ORA-INCARE Project Meeting, 24-25 March 2020, KCL, London. Due to COVID-19 held online on 24 June 2020. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact We were due to hold our ORA-INCARE project meeting in London from 24-25 March with all team members from King's College London, Vrije Universiteit Amsterdam, Technische Universität Dortmund, and Keio University, Japan along with members of Scientific Advisory Board (Prof Nora Keating and Ana Llenanozal, from the OECD and Age UK). However, this was cancelled due to COVID-19 and an online project meeting was held with the scientific advisory board on the 24th of June. This sparked intense debate and discussion and led to significantly revised outputs.
Year(s) Of Engagement Activity 2020
 
Description ORA-INCARE Workshop Meeting in Amsterdam, Vrije Universiteit April 15-17, 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Discussion research aims of project and impact/dissemination strategy and stakeholder events.
Year(s) Of Engagement Activity 2019
URL http://in-care.fk12.tu-dortmund.de/meetings/
 
Description Policy discussion with third sector organisation AgeUK to discuss and influence the direction of research and to receive feedback on the creation of an international table of LTC indicators, 5 September 2019, Age UK, Tavistock House, London. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Policy discussion with third sector organisation AgeUK to discuss and influence the direction of research and to receive feedback on the creation of an international table of LTC indicators, 5 September 2019, Age UK, Tavistock House, London.
Year(s) Of Engagement Activity 2019
 
Description Research Briefing | Inequality within Social Care Systems 12 October 2020 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Podcast, Research Briefing What drives inequality within social care? And how critical is capacity to improving the equity and effectiveness of social care systems.

Podcast with researchers from the Institute for Gerontology within Global Health and Social Medicine about their new research which analyses different social care systems across Europe to help us understand what is needed in order to build a fair and sustainable social care system.

To read the research in details head to: https://kclpure.kcl.ac.uk/portal/file...

Guest for Research Briefing
Dr Ginevra Floridi
Dr Ludovico Carrino,
Prof. Karen Glaser
Year(s) Of Engagement Activity 2020
URL https://www.youtube.com/watch?v=SO-aRQsyYKs&t=876s
 
Description Round-table on Long-term care systems and health inequalities- are the indicators appropriate to capture key dimensions and features of long-term care? 30 January 2020, KIng's College London, London 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact The aim of the Round Table was to discuss the macro-level comparative LTC indicators gathered by the project with key stakeholders in the fields of social care, ageing and pensions/retirement. The round table began with a brief introduction to the project and to the indicator table created by the project team and a moderated discussion centred around the following questions:
1. Broadly, do the indicators we collected capture the degree of state/family involvement in LTC?
2. Which of the indicators that we have collected best capture state/family involvement in LTC? (Of the indicators collected are these the best ones to use?) What is missing?
3. We have chosen to focus on indicators that reflect supply/availability rather than demand, is this the correct approach? And if so, of the indicators we have collected to date which best capture what LTC provides?
4. What features of UK LTC policy contribute to inequalities?
Year(s) Of Engagement Activity 2020
URL http://in-care.fk12.tu-dortmund.de/stakeholder-meetings/