Transitions to informal care in Great Britain during the 1990s. (Public Health Policy and Practice).

Objectives: To estimate annual changes and trends in the population of informal corers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement.

Design: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales.

Subjects: Over 9000 adults over 1 6 years interviewed personally in successive waves of the survey, including around 1300 informal corers each year.

Results: One third of co-resident corers and 40% of extra-resident corers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives, Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that corers increase their involvement in caring activities over the first three years of a caring episode.

Conclusions: The population of corers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be mast effective in supporting corers through changing circumstances. Recognition and support for corers who are heavily involved in caring activities from the outset should be a priority.

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The market value, or replacement cost, of unpaid care provided by family members and friends to ill and disabled adults in the United States was estimated to be $196 billion in 1997. (1) The economic value of informal caregiving in Britain is reported to be around [pounds sterling]34 billion per year, although the methodologies used to produce such estimates are contested. (1a 2) However, few would argue that state provision of care could ever replace the carers' role or that, without their contribution, community health and social care services could cope with the additional demands on their resources. On the contrary, supporting informal carers in their caring role is high on the public policy agendas of many developed countries.

With mounting concern about funding the long term care needs of older people, a determined shift from institutional arrangements to community and home based provision, and uncertainty about the impact of demographic and social change on the demand for and supply of family care, government policies towards carers and the people they care for are evolving rapidly. (3) Central to policy thinking is the relation between informal care and formal provision, and how to strike an appropriate and sustainable balance between cash payments and support services for both care recipients and carers. Various approaches can be observed as each country evolves a particular mix of policy responses, including home care, day care and respite services, cash allowances for carers, direct payments to disabled and older people to enable them to purchase care, and the protection of carers' pension rights. (4-6)

In Britain, there are an estimated 5.7 million adult carers, or 13% of people aged 16 years or over. (7) A great deal is known about their circumstances, who cares for whom, the types of help given, and the time spent on caring activities. (7 8) Much is also known from qualitative studies about how and why people take on a caring role, the costs and opportunity costs involved, as well as the satisfactions and difficulties of caring. (9-11) Most British studies are cross sectional in design, however, providing few insights into the dynamics of caregiving.

There is growing recognition of both the practical and theoretical importance of adopting temporal perspectives on caregiving, its antecedents and its longer term consequences. (12) A dynamic perspective is required to understand the considerable changes that carers typically experience, and draws attention to the duration and cumulative impact of caregiving. (13) Identifying stages in the evolution of caring responsibilities and activities enables services and practical support to be tailored to meet carers' changing needs and circumstances. (14 15) A dynamic perspective is also required for understanding how community care policies operate, and for evaluating the effectiveness of the support carers receive directly and from the services organised primarily around the cared-for person. (16) Current policy and practice has fuelled an increasing focus on measuring the outcomes of health and social care over time, including the impact on carers. (17) Establishing the temporal order of events is also crucial fo r understanding the relationships between the caring role and carers' health, employment and financial circumstances.

Research on the dynamics of caregiving in Britain is particularly relevant at the moment for monitoring the impact and reach of recent policy initiatives on informal carers. The national strategy for carers, announced in February 1999, emphasises the importance of providing information for carers, supporting carers in their caring activities, promoting their health and social wellbeing, and maintaining their other roles, including paid employment. (18) A key element of the strategy is the provision of ring fenced grants for local authorities to develop the range and quality of services for giving caters a break from caring. Another important measure is the introduction of a second state pension for carets. In addition, new legislation has extended carets' rights to an assessment of their own needs and service support independently of the person they look after. (19) Advice on quality standards and the practices needed to meet key outcomes for caters have also been widely circulated to service planners and ma nagers for use in audit and performance management. (20 21) Particular attention has focused on developing carer support projects in doctors' surgeries and the potential benefits of closer collaboration between the health services and carers' organisations. (22 23) Questions remain, however, about the effectiveness of these measures, the adequacy of the resources available, and the implications of targeting heavily involved carets. (24)

This paper summarises what is presently known about carer transitions in Britain, drawing on new evidence from a prospective, population based survey. It provides up to date estimates of transitions into and out of caring, compares rates of turnover between subgroups of carers, and investigates time trends in caret transitions. The approach is mainly descriptive, to provide a quantitative framework for understanding better the dynamics of caregiving. As well as examining the changing population of caters, this paper provides estimates of the extent of informal care over time, the likelihood of people taking on a caring role, and the timing of care episodes during the life course. The implications of the findings for policy development and service provision are considered in the final section.

METHODS

The sample

This paper is based on secondary analysis of the British household panel survey. The BHPS is an annual survey of a representative sample of more than 5000 private households in Great Britain (that is, England, Scotland, and Wales), yielding almost 10 000 adult interviews each year. (25) The panel was recruited in 1991 when information was gathered on all those living in private households at sample …