Mohammed T. Abou-Saleh

332 PRINCIPLES AND PRACTICE OF GERIATRIC PSYCHIATRYmany carers having to work fewer hours, take unpaid leave orstop working completely 14 . Thus, middle-aged carers may becomedisadvantaged, both in the short term in terms of loss of income,and in their later years because they have relinquished pensioncontributions.Moreover, psychological distress is common among informalcarers 7,15 . This is of wider concern, because psychological distressin carers is considered to be a predictor of breakdown ofcommunity care, i.e. of the older person’s admission to long-termcare 16,17 . The likelihood of poor psychological well-being (depression,anxiety, psychological stress) is greater in the carers ofpeople with dementia compared with relatives of older peoplewithout dementia 12,18 . Vedhara et al. 19 found that stress levelswere higher in carers of people with dementia than in a controlgroup of similar socioeconomic status.There are inconsistencies in longitudinal research of carers ofpeople with dementia. Several studies found no significantdeterioration in psychological well-being over time in carers ofpeople with dementia 20–22 , whereas other studies found significantchanges 23,24 . It could be that depression levels are determined earlyin the caregiving career and remain stable for the duration ofcaregiving 21 . Although Wright 22 found no significant changes overtime in depression, carers were significantly more depressed thannon-carers by two year follow-up.TYPES OF CAREBowers 25 proposed a useful typology of caring, beginning withanticipatory care, then preventive, supervisory and instrumentalcare. Central to all of these is the notion of protective care,whereby carers attempt to maintain the self-esteem and autonomyof the care recipient. In many cases this clashes with instrumentalaspects of caregiving. Given that formal services often provideinstrumental care, conflict may occur between service providersand carers 26 .CARING FOR CARERSMuch of the literature has called for assessment of the needs notonly of older people but also of their informal carers. The UKCarers Act (1996) 1 has answered this call, up to a point. Ideally,interventions should be ‘‘facilitative’’ in nature 26 , that is,systematic, planned in conjunction with the informal carer andcare-recipient, and complementing the type of care that the careralready provides. Such interventions should be evaluated usingsound methodological techniques, perhaps by a partnership ofacademic institutions and service providers. However, not allinterventions are successful in alleviating carer stress, and somecarers feel that interventions create rather than relieve the pressure(the place of informal carers in the therapeutic team is covered inChapter 123 of this volume). Various types of assistance havebeen designed for informal carers. These include the provision ofin-home or institutional respite services, support groups, skillstraining and education. Although carers value such interventions,they tend to be less effective than more intensive psychosocialinterventions 7 , such as counselling and psychotherapy. For a moredetailed examination of a particular intervention for carers,readers may wish to refer to a special article in this book whichoutlines a training programme for carers of people with dementiain Sydney: see Chapter 138b.Graham et al. 27 found that carers with greater knowledge ofdementia were less likely to be depressed and more likely toperceive themselves as competent in their caregiving role.Buckwalter et al. 28 evaluated a psychoeducational nursingintervention for carers of people with dementia. In thisindividual-based intervention, carers learnt how to managebehavioural problems in the care recipient, and this resulted indecreased carer depression.However, Knight et al. 29 , in a review of interventions,concluded that while the effectiveness of respite and individualpsychosocial interventions is moderate, such interventions withgroups of carers are weak. This can be observed in a recent studythat examined the effects of a group-based, dementia carereducation programme 30 . This increased carers’ knowledge ofdementia, but there was no significant impact on their psychologicalwell-being. The authors proposed that more intensive orindividual interventions may be more successful. In anotherreview of interventions, Melzer et al. 31 note that the optimum typeof intervention (that is, individual vs. group) may vary, dependingon the needs of the individual carer. Those requiring socialsupport may benefit more from support groups, whereas thosewith psychological symptoms or problems with the caring rolemay benefit more from individual interventions. Furthermore, abrief intervention can be of short-term benefit but may dilute overtime and become ineffective. McNally et al. 32 , in their review ofrespite provision for carers, found little support for the existenceof long-term benefits.Zarit et al. 33 note that disappointing findings such as these maybe due to methodological problems and/or the fact that servicesare provided at an inadequate level. Interventions are frequentlyoptimistic and carers themselves not always as prepared toincorporate change as one might expect. Moreover, it is notalways possible to balance the needs of carers with those of carerecipients, or with cost issues, within one intervention. Thus,interventions should be facilitative in the way described by Nolanet al. 26 . They should incorporate the experiences of carers, andqualitative research methods ought to be used to elicit theirconcerns early on in the caring career. This could prove invaluablein determining the best way to help carers, whether that be tocontinue caring for their relative at home or in long-term care.Social changes, such as the size and structure of the family, andincreasing geographical mobility amongst the workforce alreadypose a threat to the availability and willingness of informal carers.Failure to extend current legislation and provide the resourcesnecessary to ensure adequate implementation, may well result inthe further depletion of this pool of carers. Finally, someeconomic barriers to informal caring could be removed with theprovision of full-time national insurance and pension contributionsfor carers.SUMMARYThis chapter has discussed the importance of supporting informalcarers of people with dementia. These carers represent thefoundation of physical and emotional support for people withdementia, yet the rights and needs of carers themselves are notfully recognized. Supporting a relative with dementia can be arewarding experience but many carers suffer adverse effects ontheir own physical and mental well-being. Not only that, butwider social and demographic changes may jeopardize theinformal caring network as it currently exists. Should these‘‘invisible’’ carers become unwilling, or unable, to sustain theircaring role, then the consequences would be bleak, not only forpeople with dementia but also in terms of the costs of alternativecare. On the other hand, some would question the view that suchcare should be left to those, usually female, family members whomay otherwise have pursued a very different way of life. Whilstmoves have been made officially to recognize the importance ofthe carers’ role, there is still a long way to go before legislation willsafeguard not only their needs but also their rights, including theright not to care. But if willing carers are to remain able carers,