Skip to content

Toggle service links

You are here

  1. Home
  2. Carer variables
  3. Projections of carer supply

Projections of carer supply

The following resources examine the future of care, predicting suppy and demand factors.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Projections of care for older people with dementia in England: 2015 to 2040

BACKGROUND: The number of older people with dementia and the cost of caring for them, already substantial, are expected to rise due to population ageing. OBJECTIVE: This study makes projections of the number of older people with dementia receiving unpaid care or using care services and associated costs in England. METHODS: The study drew on up-to-date information for England from multiple sources including data from the CFASII study, output from the PACSim dynamic microsimulation model, Office for National Statistics population projections and data from the MODEM cohort study. A simulation model was built to make the projections. RESULTS: We project that the number of older people with dementia will more than double in the next 25 years. The number receiving unpaid or formal care is projected to rise by 124%, from 530,000 in 2015 to 1,183,000 in 2040. Total cost of dementia is projected to increase from £23.0 billion in 2015 to £80.1 billion in 2040, and average cost is projected to increase from £35,100 per person per year in 2015 to £58,900 per person per year in 2040. Total and average costs of social care are projected to increase much faster than those of healthcare and unpaid care. CONCLUSION: The numbers of people with dementia and associated costs of care will rise substantially in the coming decades, unless new treatments enable the progression of the condition to be prevented or slowed. Care and support for people with dementia and their family carers will need to be increased. 

Access source material through DOI

Changes of family structure and treatment status of people with severe mental illness in rural China: a comparative study from 1994 to 2015

Background Little is known about the relationship between changes of family structure for people with severe mental illness (SMI) and treatment status of SMI during a period of sustained rapid socioeconomic development. This study aimed to explore the relationship between changes of family structure and treatment status of people with SMI in a 21-year longitudinal study in a rural area of China. Methods Epidemiological surveys of mental disorders were conducted in May, 1994, and October, 2015, in the same six townships (total population 170 174 in 2015) in Xinjin county, Chengdu, which is a representative middle-income rural county in southwest China. The six townships were randomly selected from all 12 townships of Xinjin county in 1994. The surveys consisted of two steps: (1) screening procedures for psychosis (face-to-face interviews with the head of each household together with key informant interviews), household by household; and (2) psychiatric interviews of people aged 15 years and older, to identify those with SMI (including schizophrenia, bipolar disorders, and major depressive disorder) according to the International Classification of Mental and Behavioural Disorders-10 (ICD-10) criteria. The two surveys were approved by the university human research ethics committees. Findings The number of people aged 15 years and older who were identified to have SMI was 711 and 1042 in 1994 and 2015, respectively. The mean number of family members was significantly lower in 2015 (3·0 [SD 1·5]) than in 1994 (3·4 [1·5], p<0·0001). Compared with people with SMI in 1994, those with SMI in 2015 had a significantly higher rate of living alone (13·7% vs 9·9%, p<0·013) and without caregivers (15·6% vs 8·4%, p<0·0001). There was a significantly lower rate of parents as caregivers in 2015 than in 1994 (13·5% vs 17·9%, p<0·011). The rate of low family economic status (less than the population mean) for people with SMI was significantly higher in 2015 than in 1994 (p<0·0001). Fewer family members (included in the same family hukou) was significantly associated with low family economic status (p=0·023), and low family economic status was significantly associated with poor treatment status (p=0·015). Interpretation The family structure and status of people with SMI has changed markedly during the rapid socioeconomic development from 1994 to 2015 in rural China. Fewer family members, fewer family caregivers and relative poverty have gradually become major challenges for families who care for people with SMI. How to improve care for people with SMI should be important if targets for Healthy China 2030 are to be met. Community mental health care, the precise poverty alleviation strategy, and the culture-specific family intervention programme should be crucial for comprehensive community mental health care and for improvement of the treatment and recovery of people with SMI in the community. Funding The survey in 1994 was supported in part by the China Medical Board of New York (92-557). The survey in 2015 was supported in part by the Seed Funding Programme for Basic Research (2014–2016), Seed Funding Programme for Applied Research (2014–2016), Contemporary China Strategic Research Theme (2014–2016), Small Project Funding (2014–2016), and Mental Health Research in Chengdu, China (department matching fund, 2015–2017).

Access source material through DOI

Projecting future demand for informal care among older people in China : the road towards a sustainable long-term care system

The long-term care system in China relies heavily on informal care provided by family members. This study makes projections on the demand for informal care among Chinese older people between 2015 and 2035 and quantifies the level of long-term care resources needed to meet their needs. The data come from longitudinal information in a nationally representative sample, China Health and Retirement Longitudinal Survey 2011 and 2013. The macrosimulation approach (PSSRU model) and the Markov approach are integrated into one Bayesian modelling framework. The Monte Carlo simulation technique is used to capture parameter uncertainty. We project that the demand for informal care will increase from 41.3 million people (95 per cent CI: 39.9-42.7) in 2015 to 82.6 million people (95 per cent CI: 78.3-86.9) in 2035. The long-term care system faces unbalanced pressure of demand for informal care from different groups of older people. The projected demand is sensitive to changes in older people's disability trajectory and the availability of formal care provided by the government, but less sensitive to an increase in singleton households in the future. We discuss possible policy measures to alleviate the mounting pressure on the demand for informal care. 

Access source material through DOI

Global Convergence: Aging and Long-Term Care Policy Challenges in the Developing World

Aging around the world poses a global challenge in eldercare. This challenge is particularly felt in low- and middle-income countries (LMICs), where population aging outpaces the development of aged care policies and services. This Perspective highlights the phenomenon of global convergence in several unsettling trends and challenges shared across LMICs. These include the weakening of informal family care systems for the elderly, growing need for formal long-term care of the frail and disabled who can no longer be adequately supported by family members, and mounting pressures for policy responses to tackle these societal challenges. It is argued that policymakers should take a proactive stance. That is, when family care for the elderly falls short and family caregivers are increasingly under strain, the government should step in and step up support to fill in the gap by developing appropriate policies and a continuum of long-term care services that are accessible and affordable for the majority of older people in need. Three general principles are then suggested with regard to long-term care provision, financing, and quality assurance, which transcend national borders and can be used to guide long-term care policymaking across LMICs.

Access source material through DOI

Women Caring for Our Aging in Place Seniors Will Lose Out because of U.S. Immigration Policies

Most older people experiencing chronic health problems, physical disabilities, and memory losses are still able to age in place in their own homes. However, they often need help from others to enjoy healthy, active, and independent lives. They turn mostly to family members, mainly women and usually their daughters, daughters-in-law or wives. But caring for frail elders has become more demanding and complex, and these family members often feel physically and emotionally overwhelmed and burnt out. They concede that they cannot do it alone. Others find it more difficult to hold full-or even part-time jobs. Hiring home (direct) care workers to assist their loved ones can be an effective solution to ease their caregiving responsibilities. However, these personal care aides, home health aides, and nursing assistants are already in short supply. Moreover, going forward the aging of the baby boomer population will result in an even greater demand for their services even as these jobs are often unattractive to American-born workers and turnover is high. This country's immigration policies will make it even more difficult for women caring for older persons to hire these workers. Over 25 percent of home care workers are low-skilled immigrants or foreign-born. However, the Trump administration's policies reduce the number of immigrants entering the U.S. and specifically choke off the various pathways that enable low-skilled persons to be hirable in the home care sector. Female caregivers seeking relief from their caregiving responsibilities will lose out unless we remove these immigration barriers.

Access source material through DOI

The availability of carers for older disabled people in Spain: demographic insights and policy implications

The growth of the older population with care needs, together with the decrease of the population traditionally providing such care, are the most frequently cited consequences of demographic change affecting long-term care policies. This study examines the changes in the availability of carers in Spain (1998-2018) using survey data. Results point to a decrease of potential carers in terms of intergenerational care, but also to an increase of potential carers among older people of the same generation.

Access source material through DOI

Shifts in Family Caregiving--and a Growing Care Gap

As baby boomers approach old age, many factors may be driving a growing divide between the demand for family caregivers and the number of available caregivers. This article highlights trends in family caregiving and changing patterns of family life that challenge the family's capacity to carry out its traditional functions in long-term services and supports (LTSS), describes the high cost of LTSS (including out-of-pocket spending), illuminates the future care gap, and explains the implications of these trends in the context of providing and paying for LTSS.

Original source (some source materials require subscription or permission to access)

Bringing the Family in through the Back Door: the Stealthy Expansion of Family Care in Asian and European Long-Term Care Policy

In the era of global ageing, amid political concerns about increasing care needs and long-term sustainability of current care regimes, most high-income economies are seeking to minimise the use of institutional care and to expand formal home care for their older populations. In long-term care reforms, concerns about public funding, formal providers and the paid care workforce are foremost. However, an integral yet hidden part of all these reforms is the stealthily growing role of family carers. This article aims to identify and spell out how developments in formal home care bring about different modes of increasing, encouraging and necessitating family care inputs, across welfare states. Using secondary sources, three different modes were identified, and the article outlines the logic of each mechanism, drawing on illustrative examples of policy dynamics in both European and Asian countries. Family care inputs have increased through policy changes that are not explicitly or primarily about family care, but rather about expansion or changes in formal care. In some cases, this is explicit, in other cases something that happens 'through the back door'. Nonetheless, in all cases there are implications for the family caregivers' time, health and employment options. Future studies are needed to examine longitudinal trends from a comparative perspective to confirm our findings and elucidate how government commitments to formal home care provision and financing interact with the changing nature and volume of family caregiving.

Access source material through DOI

Receipt of Formal and Informal Help with Specific Care Tasks among Older People Living in their Own Home. National Trends over Two Decades

Sweden is seen as a typical example of a social democratic welfare regime, with universal and generous welfare policies. However, in the last decades, there have been substantial reductions in the Swedish provision of care for older people. This study aimed to examine trends in sources of care-receipt in older people (77+) living in their own home and with a perceived need for help with two specific tasks: house cleaning and/or food shopping. Trends in care-receipt were examined in relation to gender, living alone, having children and socio-economic position. Data from the 1992, 2002 and 2011 data collection waves of the national study, Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD), were used. Response rates varied between 86 and 95 per cent, and the sample represents the population well. Trends and differences between groups were explored in bivariate and logistic regression analyses. There was a reduction in formal care-receipt regarding house cleaning and food shopping over the study period. It was more common for women than men to receive formal care, and more common for men than women to receive informal care. Reductions in formal care have affected older women more than older men. Still, living alone was the most influential factor in care-receipt, associated with a greater likelihood of formal care-receipt and a lower likelihood of informal care-receipt. It can be concluded that public responsibility for care is becoming more narrowly defined in Sweden, and that more responsibility for care is placed on persons in need of care and their families.

Access source material through DOI

Who cares? The implications of informal care and work for policy makers and employers

Outlines some of the implications associated with the growing number of informal carers in the UK, the health and social care system's increasingly unsustainable reliance on them, and what Government and employers can do about it. The report is informed by the academic and grey literature, as well as views from a workshop attended by over 30 stakeholders from government and non-government bodies, individual carers, carers charities, think tanks, and businesses. The report looks at the increase in the number of informal carers in the UK, the financial and health implications of caring, and the challenge for policy makers and employers as carers become an increasing percentage of an ageing workforce. The report makes recommendations for Government, policymakers and business. The recommendations offer practical guidance on how to improve employment outcomes for carers, and which will also help to tackle the financial and health problems carers face. The recommendations focus on four themes: workplace flexibility; statutory leave; workplace support; and returning to work.

Original source (some source materials require subscription or permission to access)

Women and the Crisis of Care in the United States

The need for long-term care (LTC) services has been growing, and is escalating with the aging of the baby boomers. Women are the main providers and recipients of care in the formal (paid) and informal (family) LTC system, meaning they bear the brunt of the gap between the need for care and available resources. Without strong public resistance, this gap is likely to be filled by relying upon family care, mainly provided by women. This re-familization of care could turn our crisis of care into a catastrophe for low- and middle-income families.

Original source (some source materials require subscription or permission to access)

Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015-2035

Introduction: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. Methods: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers’ wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. Results: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. Conclusions: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

Access source material through DOI

Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

Original source (some source materials require subscription or permission to access)

"What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Results: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out‐of‐family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long‐term care plans.

Access source material through DOI

Planning for Future Care and the End of Life: A Qualitative Analysis of Gay, Lesbian, and Heterosexual Couples

Two key components of end-of-life planning are (1) informal discussions about future care and other end-of-life preferences and (2) formal planning via living wills and other legal documents. We leverage previous work on the institutional aspects of marriage and on sexual-minority discrimination to theorize why and how heterosexual, gay, and lesbian married couples engage in informal and formal end-of-life planning. We analyze qualitative dyadic in-depth interviews with 45 midlife gay, lesbian, and heterosexual married couples (N = 90 spouses). Findings suggest that same-sex spouses devote considerable attention to informal planning conversations and formal end-of-life plans, while heterosexual spouses report minimal formal or informal planning. The primary reasons same-sex spouses give for making end-of-life preparations are related to the absence of legal protections and concerns about discrimination from families. These findings raise questions about future end-of-life planning for same- and different-sex couples given a rapidly shifting legal and social landscape.

Access source material through DOI

Sustainability of Long-term Care: Puzzling Tasks Ahead for Policy-Makers

Background: The sustainability of long-term care (LTC) is a prominent policy priority in many Western countries. LTC is one of the most pressing fiscal issues for the growing population of elderly people in the European Union (EU) Member States. Country recommendations regarding LTC are prominent under the EU’s European Semester.  Methods: This paper examines challenges related to the financial- and organizational sustainability of LTC systems in the EU. We combined a targeted literature review and a descriptive selected country analysis of: (1) public- and private funding; (2) informal care and externalities; and (3) the possible role of technology in increasing productivity. Countries were selected via purposive sampling to establish a cohort of country cases covering the spectrum of differences in LTC systems: public spending, private funding, informal care use, informal care support, and cash benefits.  Results: The aging of the population, the increasing gap between availability of informal care and demand for LTC, substantial market failures of private funding for LTC, and fiscal imbalances in some countries, have led to structural reforms and enduring pressures for LTC policy-makers across the EU. Our exploration of national policies illustrates different solutions that attempt to promote fairness while stimulating efficient delivery of services. Important steps must be taken to address the sustainability of LTC. First, countries should look deeper into the possibilities of complementing public- and private funding, as well as at addressing market failures of private funding. Second, informal care externalities with spill-over into neighboring policy areas, the labor force, and formal LTC workers, should be properly addressed. Thirdly, innovations in LTC services should be stimulated to increase productivity through technology and process innovations, and to reduce costs.  Conclusion: The analysis shows why it is difficult for EU Member State governments to meet all their goals for sustainable LTC, given the demographic- and fiscal circumstances, and the complexities of LTC systems. It also shows the usefulness to learn from policy design and implementation of LTC policy in other countries, within and outside the EU. Researchers can contribute by studying conditions, under which the strategies explored might deliver solutions for policy-makers

Access source material through DOI

Indirect Fiscal Effects of Long‐Term Care Insurance*

Informal care by close family members is the main pillar of most long‐term care systems. However, due to demographic ageing, the need for long‐term care is expected to increase while the informal care potential is expected to decline. From a budgetary perspective, informal care is often viewed as a cost‐saving alternative to subsidised formal care. This view, however, neglects that many family carers are of working age and face the difficulty of reconciling care and paid work, which might entail sizeable indirect fiscal effects related to forgone tax revenues, lower social security contributions and higher transfer payments. In this paper, we use a structural model of labour supply and the choice of care arrangement to quantify these indirect fiscal effects of informal care. Moreover, based on the model, we discuss the fiscal effects related to non‐take‐up of formal care.

Access source material through DOI

Aging, Disability, and Informal Caregivers: A Cross-sectional Study in Portugal

Objectives: Aging is pushing states to rethink long-term care policies in several dimensions. This study aims to characterize the reality of dependent older people regarding their demographic and health characteristics, to describe their informal carers and understand the availability of informal care.; Methods: A cross-sectional study was developed in Portugal in 2013. Descriptive statistical analyses and binary logistic analysis were conducted.; Results: Results show that the informal long-term care sector is primarily aimed at older people with severe limitations in their activities of daily living and at the chronically ill, particularly older women. Additionally, 39.5% of dependent older persons do not have informal care and only receive informal aid in cases of extreme need.; Discussion: Results show a critical situation for both social groups (older persons and caregivers) and the prospect of an alarming situation in the near future (aging and reduced availability of informal caregivers) unless a new approach for long-term care is developed.

Access source material through DOI

Who is responsible for providing care? Investigating the role of care tasks and past experiences in a cross-sectional survey in the Netherlands

Background: Many countries face substitution from formal to informal care. It is essential that a sufficient number of caregivers, such as family, friends or neighbors, are willing and able to lend care to address the needs of ill or elderly persons. We investigated whether the general public, who might become caregivers in the future, and current informal caregivers align with the shift to more informal caregiving. Methods: We studied the views on the responsibility for care of the general public versus the government, and whether these views differed among groups with diverse past experiences with care in terms of own health problems or previous caregiving activities. Data (n = 1097) was collected among the Dutch Health Care Consumer Panel with a survey in October 2015. Multivariate analyses of the views on responsibility for care in general and for different types of care were performed using (i) health, (ii) informal care, and (iii) general background characteristics, among a sample of the general public and among a subgroup of current caregivers. Results: The majority (67%) of the respondents would be willing to provide informal care in the future, when necessary. Respondents were more willing to provide support tasks than personal or nursing care activities. Among current caregivers, views on responsibility for care were associated with their past experience. Experiencing less burden of caregiving was associated with perceiving the general public as more responsible for personal or nursing care. Conclusions: The results of this study show that substitution from formal to informal care is more in line with public views when support activities are concerned than personal or nursing care. In addition, burdened caregivers also consider the government more responsible for personal or nursing care. When handing over care tasks to the public domain a critical view is needed on which care tasks are most appropriate for this. 

Access source material through DOI

Changing moralities: Rethinking elderly care in Spain

Demographic and social changes in Europe and OECD countries have increased the number of dependents in recent decades, challenging the organisation of health systems and raising calls for re‐definition of long‐term care services. In Spain the crisis of care has challenged a care regime based strongly on the family. Recent social policies have attempted to address this challenge. This article analyses the ideal of family care expressed by women who have traditionally played the role of caregivers. Reflecting a disruption of previously held moral attitudes throughout society, elderly women manifest new expectations in relation to their own care, redefining the scope of filial obligation and linking it to a renewed notion of independency and autonomy. However, in the current context of financial crisis, family care appears not as a choice, but an undesirable consequence of the lack of public policies. The study applies a theoretical approach based on the anthropology of moralities. 

Access source material through DOI

Mapping the future of family care: receipt of informal care by older people with disabilities in England to 2032

Many long-term care systems in economically developed countries are reliant on informal care. However, in the context of population ageing, there are concerns about the future supply of informal care. This article reports on projections of informal care receipt by older people with disabilities from spouses and (adult) children to 2032 in England. The projections show that the proportions of older people with disabilities who have a child will fall by 2032 and that the extent of informal care in future may be lower than previously estimated. The policy implications, in the context of the Dilnot Commission's report, are explored. 

Access source material through DOI

Care by spouses, care by children : projections of informal care for older people in England to 2031

The future market costs of long-term care for older people will be affected by the extent of informal care. This paper reports on projections of receipt of informal care by disabled older people from their spouses and (adult) children to 2031 in England. The paper shows that, over the next 30 years, care by spouses is likely to increase substantially. However, if current patterns of care remain the same, care by children will also need to increase by nearly 60 per cent by 2031. It is not clear that the supply of care by children will rise to meet this demand. 

Access source material through DOI

Re-Shaping Social Care Services for Older People in England: Policy Development and the Problem of Achieving 'Good Care'

The first part of the paper argues that the care relationship is crucial to securing care quality, which has implications for the way in which quality is achieved and measured. However, for more than twenty years, governments have emphasised the part that increasing market competition and, more recently, user choice of services can play in driving up the quality of care. The second part of the paper analyses the development of social care services for older people, from the reform of 1990 to the changes following the general election of 2010. The paper goes on to examine whether competition and choice are in any case enough to result in ‘good care’, given the evidence of limitations both in the amount of choice available and in how far older people are able or willing to choose. It is argued that if ‘good care’ depends disproportionately on the quality of the care relationship, then more attention should be paid to the care workforce, which has received relatively little comment in recent government documents.

Access source material through DOI

Caregiving for the elderly family members as a challenge for men - The hidden and forgotten carers in ageing Europe

The purpose of our research was to investigate male caregiving via a status of being hidden and forgotten in East-Central Europe, where caregiving itself had only lately been emancipated, and only as provided by women. In Poland and in other European countries the gender bias is clear: men provide less care than women, the care is less intensive and of a different character. By desk research, own research interpretation and literature review, the paper addressed informal, family caregiving towards frail older adults performed by men. We examined the assumption that the family was the prime careholder of the aged as imprinted in European psyche and stereotypical expectations that females became the main caregivers. Yet, the demographic forecast showed that informal caregiving for frail adults was inevitably falling on men, as a result of increasing divorce rates and women’s employment. However, this picture is incomplete, making men forgotten or hidden carers. Major findings of our research were to provide a broader discourse on male caregiving and have positive impact with practical after-effects as well as filling gaps in knowledge in several relevant fields

Original source (some source materials require subscription or permission to access)

Older carers of adults with a learning disability confront the future: Issues and preferences in planning

The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.

Access source material through DOI

Shaping the future of care together: equality impact assessment

This assessment looks at the likely equality impact of possible reforms to the care and support system on people according to age, ethnicity, gender, race, religion and belief, and sexuality. It takes the issues of funding, increased personalisation, innovation, joined-up services and better provision of information on how the system works and what service users and carers are entitled to as proposed in the green paper 'Shaping the future of care together' and forecasts potential outcomes for the groups mentioned above.

Original source (some source materials require subscription or permission to access)

The effect of free personal care for the elderly on informal caregiving

Population forecasters have predicted that the proportion of people in the UK aged 65 years and older will rise significantly in coming decades. This shift in demographics will put increasing pressure on the National Health Service and providers of social care. However, older people do not rely only on care provided by the state; informal care of the elderly is often supplied by family and friends. Therefore, the relationship between formal and informal care and the reaction of informal carers to institutional changes is an important policy issue. This study uses individual level data from the British Household Panel Survey to estimate the effects of the introduction of free personal care for the elderly in Scotland on informal care behaviour. As the change in policy applied only to Scotland, a natural experiment is formed allowing a difference-in-differences approach to be used. This paper finds that the introduction of the policy increased the probability of women supplying informal care by around six percentage points. In addition, for both sexes, it reports evidence of a shift away from the upper and lower tails towards the middle of the hours of care distribution as a result of the change in policy. Copyright © 2015 John Wiley & Sons, Ltd.

Access source material through DOI

Long-term care use and supply in Europe: projections for Germany, the Netherlands, Spain and Poland

This report presents results of projections of use and supply of long-term care for older persons in four countries representative of different long-term care systems: Germany, the Netherlands, Spain and Poland. Using a standardised methodology, the projections show that between 2010 and 2060, the numbers of users of residential care, formal home care and informal care are projected to increase in all countries, but at different rates. The results also indicate that if current patterns of care use and supply prevail, supply of informal and formal care is likely to fall behind demand. Measures to increase LTC capacity will be needed in all countries; the key policy implications of these findings are discussed in Policy Brief No. 12 in this series. 

Original source (some source materials require subscription or permission to access)

Working with carers in the next decade: the challenge

This paper outlines two challenges to community nurses as they work with unpaid carers. These reflect a changing culture in the way that healthcare will be delivered in the coming decade. The first of these challenges is a shift towards focusing on outcomes for both service users and adult carers. Outcomes evidence the impact a service has on a person's life. The second is the increasing focus on the concept of carers as partners in care. 

Access source material through DOI

Informal care for older people provided by their adult children: projections of supply and demand to 2041 in England

The paper examines trends in the probability of providing intense care for older parents over the fifteen years between 1985 and 2000, and asks what would happen to the numbers of people providing care to older parents if these trends were to continue in the coming decades. Because the present study is based on an analysis of past trends in provision of informal care, it allows for some key assumptions underlying the projections of informal care in future years to be examined empirically.

Original source (some source materials require subscription or permission to access)

Simultaneous care for parents and care for children among mid-life British women and men

This article investigates care provided to parents and parents-in-law by mid-life adults with dependent children at home. Data from the General Household Survey are used first to estimate the prevalence of this 'two-way' care over the past decade, and second to develop forecasts of two-way care for a generation of women who have just finished their childbearing years. Having a higher education qualification is associated with later ages both of caring for parents and of having children at home. Increasingly late first childbearing, however, points towards a potentially greater caring 'squeeze' for higher qualified women, with a little over one in ten at age 45 projected to be caring for a parent while still having a child under 18 in the household. 

Original source (some source materials require subscription or permission to access)

Burden of Alzheimer's disease: population-based estimates and projections for New Zealand, 2006-2031

OBJECTIVE: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. METHOD: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand. In the absence of usable New Zealand data, data on disease incidence and progression were obtained from systematic reviews of the international (mainly European, Australian and North American) literature. Projection scenarios included a demographic scenario in which change resulted only from increases in population size and ageing; a prevention scenario in which incidence rates were reduced by 25% from 2011; a treatment scenario in which disease progression rates were likewise reduced by 25% from 2011; and a combined scenario capturing both interventions. RESULTS: The model estimated that approximately 28000 people are currently living with AD (whether formally diagnosed or not), approximately 55% in the early and 45% in the late stage of the disease; approximately 6600 people newly develop AD each year; and approximately 2300 people die from (as opposed to with) this condition. The model projected that the prevalence of AD will increase approximately 2.5-fold (to approx. 70000 people) by 2031, if demographic drivers are unopposed. Plausible improvements in prevention and treatment, however, acting together, could reduce this growth by up to 50%, so that the prevalence of AD only doubles. CONCLUSION: Even this more optimistic projection has profound implications for the funding and provision of dementia care services, as well as for patients, their families, informal carers and the psychogeriatric workforce. New service configurations and models of care will be necessary. Access, quality and coordination standards for home care, day care, respite care, residential care and specialist services (including memory clinics) will need to respond accordingly.

Access source material through DOI

Relying on informal care in the new century? Informal care for elderly people in England to 2031

The research reported here is concerned with the future of informal care over the next thirty years and the effect of changes in informal care on demand for formal services. The research draws on a PSSRU computer simulation model which has produced projections to 2031 for long-term care for England. The latest Government Actuary's Department (GAD) 1996-based marital status projections are used here. These projections yield unexpected results in that they indicate that more elderly people are likely to receive informal care than previously projected. The underlying reason is that the GAD figures project a fall in the number of widows and rise in the number of elderly women with partners. What this implies is that ‘spouse carers’ are likely to become increasingly important. This raises issues about the need for support by carers since spouse carers tend to be themselves elderly and are often in poor health. The article explores a number of ‘scenarios’ around informal care, including scenarios in which the supply of informal care is severely restricted and a scenario in which more support is given to carers by developing ‘carer-blind’ services. This last scenario has had particular relevance for the Royal Commission on Long Term Care.

Access source material through DOI

A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032

A key feature of population ageing in Europe and other more economically developed countries is the projected unprecedented rise in need for long-term care in the next two decades. There is, however, considerable uncertainty over the future supply of unpaid care for older people by their adult children. The future of family care is particularly important in countries planning to reform their long-term care systems, as is the case in England. This article makes new projections of the supply of intense unpaid care for parents aged 65 and over in England to 2032, and compares these projections with existing projections of demand for unpaid care by older people with disabilities from their children. The results show that the supply of unpaid care to older people with disabilities by their adult children in England is unlikely to keep pace with demand in future. By 2032, there is projected to be a shortfall of 160,000 care-givers in England. Demand for unpaid care will begin to exceed supply by 2017 and the unpaid ‘care gap’ will grow rapidly from then onwards. The article concludes by examining how far this unpaid ‘care gap’ is likely to be met by other sources of unpaid care or by developments in new technology and examines the implications of the findings for long-term care policy.

Access source material through DOI

Future costs for long-term care: Cost projections for long-term care for older people in the United Kingdom

The purpose of this paper is to analyse the future sustainability of the UK system for provision of long-term care (LTC) due to changes in demography and health status among the older people. It considers how demand for LTC will evolve and to what extent there will be sufficient supply to meet demand. For formal care, this requires an estimate of how much the public purses, and hence taxpayers, will be burdened with LTC costs. For informal care, it involves estimating whether there will be enough carers if current patterns of provision were to continue. The results show that demand for long-term care will start to take off 10 years from now, and reach a peak somewhere after 2040. The research finds that the most significant increase will be in demand for informal care, where the number of recipients are projected to increase from 2.2 million today to 3.0 million in 2050. Relative increases will be similar in all care settings, amounting to between 30 and 50% compared with the levels today; however, the most noticeable increase will be in demand for formal home care, which is projected to be 60% above current levels by 2040. Total expenditure on formal long-term care will increase from £ 11 billion per year today to approximately £ 15 billion per year by 2040 (in 2001 prices). Expressed in taxation terms the effective contribution rate will increase from around 1.0% of total wages today to 1.3% in 2050. Availability of informal carers is potentially a big problem, but the extent of the problem is very sensitive to the assumptions made concerning health improvements and care-giving patterns. © 2005 Elsevier Ireland Ltd. All rights reserved.

Access source material through DOI

Informal care for older people by their adult children: Projections of supply and demand to 2041 in England

As the numbers of older people increase in future years, demand for long-term care is also likely to increase substantially. Since the long-term care system in England depends heavily on informal or unpaid care, the increase in demand for long-term care is likely to mean an increase in demand for informal care. [...]

The current paper looks at the supply of informal care specifically by the adult children of older people. The paper makes projections of the numbers of people providing intense care, to older parents1 to 2041. The projections are based on an on-going study of recent past trends in the provision of intense intergenerational care to older people in Great Britain, using the 1985, 1990, 1995 and 2000 General Household Survey (GHS) data on provision of informal care (Pickard 2002). The paper examines trends in the probability of providing intense care for older parents over the fifteen years between 1985 and 2000, and asks what would happen to the numbers of people providing care to older parents if these trends were to continue in the coming decades. Because the present study is based on an analysis of past trends in provision of informal care, it allows for some key assumptions underlying the projections of informal care in future years to be examined empirically.

Original source (some source materials require subscription or permission to access)

Experiencing dementia: evaluation of Into Dementia

Background: Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for.

Aim: To develop and evaluate Into D’mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this ‘day’, modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction.

Research: Nine informal carers and 23 care professionals took part in the research into the Into D’mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience.

Results: Participants found Into D’mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia.

Conclusion: Into D’mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D’mentia appears to be a suitable method to support informal and professional caregivers.

Access source material through DOI

Who pays and who benefits? How different models of shared responsibilities between formal and informal carers influence projections of costs of dementia management

Background: The few studies that have attempted to estimate the future cost of caring for people with dementia in Australia are typically based on total prevalence and the cost per patient over the average duration of illness. However, costs associated with dementia care also vary according to the length of the disease, severity of symptoms and type of care provided. This study aimed to determine more accurately the future costs of dementia management by taking these factors into consideration. Methods: The current study estimated the prevalence of dementia in Australia (2010-2040). Data from a variety of sources was recalculated to distribute this prevalence according to the location (home/institution), care requirements (informal/formal), and dementia severity. The cost of care was attributed to redistributed prevalences and used in prediction of future costs of dementia. Results: Our computer modeling indicates that the ratio between the prevalence of people with mild/moderate/severe dementia will change over the three decades from 2010 to 2040 from 50/30/20 to 44/32/24.Taking into account the severity of symptoms, location of care and cost of care per hour, the current study estimates that the informal cost of care in 2010 is AU$3.2 billion and formal care at AU$5.0 billion per annum. By 2040 informal care is estimated to cost AU$11.6 billion and formal care $AU16.7 billion per annum. Interventions to slow disease progression will result in relative savings of 5% (AU$1.5 billion) per annum and interventions to delay disease onset will result in relative savings of 14% (AU$4 billion) of the cost per annum.With no intervention, the projected combined annual cost of formal and informal care for a person with dementia in 2040 will be around AU$38,000 (in 2010 dollars). An intervention to delay progression by 2 years will see this reduced to AU$35,000. Conclusions: These findings highlight the need to account for more than total prevalence when estimating the costs of dementia care. While the absolute values of cost of care estimates are subject to the validity and reliability of currently available data, dynamic systems modeling allows for future trends to be estimated.

Access source material through DOI