out the illness, for example, combined packages ofcounselling, carer training and respite care. Inparallel, priority should also be given to learningabout the impact of interventions, such as counsel-ling, memory training and drug treatments forpeople with dementia. To focus on one withoutthe other will only provide a partial answer to howcare at home might best be sustained. Researchevidence on the e�ectiveness of formal servicesis absolutely vital in our battle to convincepolicy makers that allocating scarce resourcesfor the development of comprehensive dementiacare services is worth while. Consumer based

organisations in the dementia ®eld, such asAlzheimer ScotlandÐAction on Dementia, arewell placed to work in partnership with researchersto both develop research programmes and di�use®ndings to key agencies and individuals able toin¯uence change.

REFERENCE

Department of Health (1989) Caring for People:Community Care in the Next Decade and Beyond.HMSO, London.

COMMENTARYCHARLOTTE CLARKE

Research Fellow, Faculty of Health, Social Work and Education, University of Northumbria at Newcastle,Newcastle Upon Tyne, UK

One of the most remarkable features of the paperby Lyons and Zarit is the similarity between thesituation in the USA and the experiences ofBritain. This is evident in three speci®c areas: thescale of family caring; the genderization of caringand professional involvement; and the ambiguitywhich surrounds conceptualizations of carers.

Family caring is a persistent social feature of allcultures. However, the speci®c ®gures cited asprevalence rates are subject to the methodologicalcomplexities of de®ning exactly what we mean by,and expect of, a carer. The boundary drawn mayinclude only those delivering physical care, or maywiden su�ciently to include those whose caringinput is in monitoring and supervising an individ-ual (as may well be the case for people withdementia). It may be restricted to care for peoplewho live in the community, or may recognize andinclude care which continues beyond the point ofinstitutionalization. Very often an arbitrary ®gureof hours involvement per week is identi®ed todenote the intensity of caring. Whatever bound-aries are selected, however, the very commonnature of caregiving cannot be disputed. In Britain,it is estimated that one in seven households have acarer (although they may not realize that othersde®ne them as such) (Arber and Ginn, 1990)Ðthat

is, enough carers to ®ll more than ®ve out of everyseven schools in the country.

Just as in the USA, Britain's professionalresponse to family carers has been dogged byexpectations of carers which rest on assumptions ofinvolvement based on gender and kin relationships.The feminist critique of community care andfamily caring challenged these assumptions asperpetuating the inequality of women in the homeand the workplace (eg Ungerson, 1987). However,this debate also obscured the presence of the manymale carers, most of whom are also spouses (Green,1988). This marital relationship is similarly vulner-able to exploitation by policies and practices whichfail to recognize the tensions in a relationship whichis both caregiving and marital.

While on both sides of the Atlantic there is aconceptual lack of clarity about carers whichpermeates policy and practice, Britain has madesome very notable contributions in the ®eld ofsocial policy. The seminal work of Julia Twigg doesat least provide a framework which can be used tounderstand some of the complexities involved(Twigg, 1989; Twigg andAtkin, 1994). Twigg ident-i®es four models of service response to carers;to regard them as a resource, as co-workers,as co-clients or as superseded in their caring.

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194 K. S. LYONS AND S. H. ZARIT

Regarding carers as a resource has perhapsdominated professional practice until very recently,and often this resource was not negotiated but wasassumed to be available if there was known to be arelative living in the vicinity. Regarding carersas co-workers at least appears to be more of anegotiable position, but it does emphasize that theperson with dementia is to be `cared for'. Not onlyis the individual placed in an increasingly depen-dent position by the `team of carers', but the veryreason for family caring, the ties of kinship, may beundermined.

British legislation appears to be promoting theposition of carers as co-clients (Carers (Recognitionand Services) Act 1995), requiring that statutoryservices assess carer needÐa laudable move whichhas been achieved only through considerablepressure from local and national carer groups.However, there is a need to guard against creating anew diagnostic category of `carer'Ða move whichimmediately pathologizes care. Within dementiacare, this move simply compounds the existingposition, which tends to privilege the needs of thecarer rather than those of the person with dementia,whose care is pervaded by therapeutic pessimism.Twigg's model of superseded carers is useful inprompting an awareness of the potential for acaring relationship to fragment into the dependentcare-receiver and the care-giver, a division which isat times aided and abetted by services intervention.There may be a need to free the individual fromsuch a position of constructed dependency.

Further contribution to the debate of concept-ualizing family carers and services is made byNolan et al. (1996), who emphasize a model ofcarer as expert, as de®ned in terms of professionalcare and competency. This does not necessarilyrecognize the status of the carer as expert in theirown specialist ®eldÐthat of knowing about theindividual they care for and their own speci®csituation of caring. This is a knowledge base andexpertise which is very di�erent from that ofprofessional carers (Clarke and Heyman, 1998).

THE METHODOLOGICAL LEGACY

Many of the policy and practice ambiguitieswhich surround caring can be located in thechanging research methodologies which have beenused in dementia care and family caring. One over-whelming impression is that an enormous body ofresearch literature has been built up based on

proxies. First, for years the family carer has beenused as a proxy voice for that of the person withdementiaÐindeed, it is only very recent workwhich has striven to develop data collection andanalysis methods which allow the person withdementia to speak for themselves (eg Keady, 1997).

Second, throughout the 1980s the quality of lifeof carers was de®ned by the proxy of stress andburden such that caring was seen to be anoverwhelmingly negative experience with a poten-tially deleterious e�ect on carer health (eg Cheno-weth and Spencer, 1986). Eventually the validity ofsuch a restricted conceptualization of caring andindeed of burden itself was questioned (Vitalianoet al., 1991), and carer's stress was even challengedas a creation of the stress researchers (Kahana andKinney, 1991; Opie, 1992). Again, it is only recentlythat more qualitative and interaction research hashighlighted the centrality of the caring relationshipto the caring experience (eg Wuest et al., 1994).Thus there has been a transition from developingservices as external bu�ers to stress (eg respite care)to recognising the internal complexities of thecaring relationship (eg lifespan reciprocity).

Other methodological proxies have included theuse of measures such as marital status to guagesocial support, as discussed in the paper by Lyonsand Zarit, and the con¯ation of quality of care withquality of life such that innovative methods ofimproving professional practice, like dementia caremapping, seek to develop care with an underlyingassumption that better care means a better life(Kitwood, 1997).

The existing research base has been a verypowerful vehicle in a necessary political battle toraise awareness about carers at an individual,practice and policy level. The more people recog-nize themselves as carers, the more they are able tosecure resources such as bene®ts, and the more theymay be able to understand and describe theirposition. The more professional practitioners haverecognized that carers are under stress, the morethey have developed services in attempts to negateit. The more politicians have been made awareof caring, the more pressure it has been possibleto apply in attempting to secure, for example,®nancial protection for carers.

THE UNANSWERED QUESTIONS

There is still an enormous amount of knowledgeneeded about caring for someone with dementia. If

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FORMAL AND INFORMAL SUPPORT 195

the focus is to move away from the carer and ontothe caring relationship, then there is a need tounderstand what happens within that relationship.The complexity of the relationship between theperson with dementia, their family carers andprofessional carers cannot be underestimated.Some useful frameworks include: a typology ofcaring which is di�erentiated by purpose ratherthan task (Nolan et al., 1996, and developed fromearlier work by Bowers, 1987); the theory ofnormalization, in which carers and people withdementia seek to maintain their relationship(Clarke, 1995); the process of maintaining involve-ment engaged in by people with dementia (Keady,1997).

If policy and practice continue to perpetuatethe model of carer as co-client, then there is aneed to understand the impact that medicalizingcaring will have on the caring relationship and onthe long-term survival of caring as a social act ofinterpersonal and kin engagement. The ethicalcon¯ict which results from increasing the visibilityof the perspective of the person with dementiabut still seeking to respond to carer need demandsto be addressed. Moreover, as the special knowl-edge of family carers begins to be recognized(Clarke and Heyman, 1998), professional practicemust ®nd e�ective ways of respecting and utilizingit.

There is somuch still to be done, but wemust alsotake time to applaud the e�orts of all those whosework has brought us to this pointÐ15 years agothe term `carer' was relatively unknown. Today weare beginning to know what we don't know, andthat is an enormous step forward which allows us tochart a future for research in dementia care.

REFERENCES

Arber, S. and Ginn, J. (1990) The meaning of informalcare: Gender and the contribution of elderly people.Ageing Soc. 10, 429±454.

Bowers, B. J. (1987) Inter-generational caregiving: Adultcaregivers and their ageing parents. Adv. Nurs. Sci. 9,20±31.

Chenoweth, B. and Spencer, B. (1986) Dementia: Theexperience of family caregivers. Gerontologist 26,267±272.

Clarke, C. L. (1995) Care of elderly people su�eringfrom dementia and their co-resident informal carers.Researching User Perspectives on Community HealthCare (B. Heyman, Ed.). Chapman & Hall, London.

Clarke, C. L. and Heyman, B. (1998) Risk managementfor people with dementia. In Risk, Health and HealthCare: A Qualitative approach (B. Heyman, Ed.).Chapman & Hall, London.

Green, H. (1988) General Household Survey 1985:Informal Carers. HMSO, London.

Kahana, E. and Kinney, J. (1991) Understandingcaregiving interventions in the context of the stressmodel. InHealth, Illness and Disability in Later LifeÐPractice, Issues and Interventions (R. F. Young andE. A. Olsen, Eds). Sage, Newbury Park, CA.

Keady, J. (1997) Maintaining involvement: A metaconcept to describe the dynamics of dementia. InState of the Art in Dementia Care (M. Marshall, Ed.).Centre for Policy on Ageing, London.

Kitwood, T. (1997) Dementia Reconsidered: The PersonComes First. Open University Press, Buckingham.

Nolan, M., Grant, G. and Keady, J. (1996) Understand-ing Family Care. Open University Press, Buckingham.

Opie, A. (1992) There's Nobody There: Community Careof Confused Older People. Oxford University Press,Auckland.

Twigg, J. (1989) Models of carers: How do social careagencies conceptualise their relationship with informalcarers? J. Soc. Pol. 18, 53±66.

Twigg, J. and Atkin, K. (1994) Carers Perceived: Policyand Practice in Informal Care. Open University Press,Buckingham.

Ungerson, C. (1987) Policy is Personal: Sex, Gender andInformal Care. Tavistock, London.

Vitaliano, P. P., Young, H. M. and Russo, J. (1991)Burden: A review of measures used among caregiversof individuals with dementia. Gerontologist 31, 67±75.

Wuest, J., Ericson, P. K. and Stern, P. N. (1994)Becoming strangers: The changing family caregivingrelationship in Alzheimer's disease. J. Adv. Nurs. 20,437±443.

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196 K. S. LYONS AND S. H. ZARIT