Mohammed T. Abou-Saleh

Principles and Practice of Geriatric Psychiatry.Editors: Professor John R. M. Copeland, Dr Mohammed T. Abou-Saleh and Professor Dan G. BlazerCopyright & 2002 John Wiley & Sons LtdPrint ISBN 0-471-98197-4 Online ISBN 0-470-84641-059bInformal Carers and Their SupportD. BuckUniversity of Liverpool, UKThis chapter is concerned with the need to support informal carersof people with dementia. It will describe how the importance ofinformal carers has been officially recognized in the UK, albeitpartially. The shortcomings of state legislation are reflected in thenarrow definitions of informal care that are still prevalent.Following a discussion of ‘‘What is caring?’’, this text willdescribe the significance of the role played by informal carers forboth individuals with dementia and at the wider level. Then thechapter will explain how the rewards of providing informal careare often overshadowed by the adverse effects on carers’ physicaland emotional well-being. Some of the economic barriers faced bycarers will also be outlined. Without adequate support, the abilityof informal carers to maintain their role may diminish. A briefoverview of the various interventions intended to ‘‘care for carers’’will follow. It will be seen that many interventions are inadequate,and the need for proper evaluation will be highlighted. Thechapter will end with a summary of the key messages.POLICY BACKGROUNDIn the UK the Carers (Recognition and Services) Act 1995(1996) 1 , gave some informal carers the right to ask for anassessment of their ability to care, and gave local authorities aduty to take into account the results of this when deciding whatsupport to provide for the care recipient. However, carers canonly have an assessment if they provide ‘‘regular and substantial’’care and the person they care for is receiving an assessment. Thus,although the Act was a step forward, it should be extended if thetrue needs of dementia carers are to be met.WHAT IS CARING?Informal caring has been defined in many ways 2 . On the one hand,it is often defined solely in terms of the physical activities involved,e.g.:Anyone who looks after or cares for a handicapped person to anyextent in their own home or elsewhere 3 .More recently, the Carers Act (1996) 1 promoted this view with itsrestriction to those providing ‘‘regular and substantial’’ care. Incontrast, some argue that whilst ‘‘caregiving’’ is best thought of asthe physical and behavioural activity of an informal supporter,‘‘caring’’ can be seen as the emotional/affective element. Nolan etal. 2 provide a very useful definition, which will set the context forthe remainder of this chapter:. . . caring comprises emotional, social and psychological aspects, aswell as a general concern for others, in addition to practicaltending.THE IMPORTANCE OF THE INFORMAL CARER’SROLEThe majority of caring is undertaken by relatives, and there arearound 7 million informal carers of older or disabled relatives athome in the UK 4 . The extent and nature of the care provided isdiverse, from continual to occasional help, and from assistancewith personal care to the provision of a sympathetic ear. Thenumber of people in England and Wales living with dementia isestimated to be around 550 000 5 . Although the number of peoplehere caring for someone with dementia is not known, most peoplewith dementia will have an informal carer. A study with which theauthor was involved 6 found that out of 502 mentally frail olderpeople, 68% identified an informal carer. In the USA, Haley 7found that 80% of the care of people with Alzheimer’s disease in1987 was provided by relatives.Informal caring offers enormous benefit, both to the individual(carer and care recipient) and at a wider level. Tax-payers benefitin that institutionalization of the older person is prevented ordelayed where there exists a willing and able informal carer. TheCarers’ National Association in the UK estimated that should just10% of informal carers feel unable to continue their caring role,the cost of alternative care would be £2 billion/year 8 . On theindividual level, many people in need of care prefer to receive itfrom their families, rather than formal carers 9 . However, thistendency is often dependent on the quality of the relationship 10 .The decision to choose formal care, on the other hand, isassociated with a desire not to inconvenience or overload familyand friends. Being able to provide care can be a fulfillingexperience from the perspective of the carers, who often feelsatisfaction at being able to improve the well-being and maintainthe dignity of the older person, experience appreciation andcompanionship and feel they are reciprocating past help 6,11 .ADVERSE EFFECTS OF CARINGDespite the potential rewards of caring, many carers feel their ownphysical health, social and working life are adversely affected 6,8,12 .One survey of a district health authority in England found that14% of its workforce were providing informal care for olderpeople 13 . Many people who are working at the same time as caringfor an older relative are eager to fulfil both responsibilities. Buttrying to balance competing demands is often problematic, withPrinciples and Practice of Geriatric Psychiatry, 2nd edn. Edited by J. R. M. Copeland, M. T. Abou-Saleh and D. G. Blazer&2002 John Wiley & Sons, Ltd