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An effective integrated system of care requires that there are clear, co-ordinated and definite routes into a range of community services (Ovretveit, 1993). A mechanism by which this can be achieved is by the nomination of a key worker, or case manager, with responsibility for co-ordinating fragmented systems of community care for people with dementia. Ideally, there should be a number of case managers with small case-loads operating within each community care area, or district, each reporting to the overall Co-ordinator of Services for the Elderly. Dementia is lifelong and progressive and care plans must, therefore, be monitored and revised over the course of the disease. The key worker would act as a single point of reference. This is very important particularly for those with dementia living alone and becomes increasingly significant as the person with dementia becomes more dependent and his or her needs become more complex. The case manager should be linked to a multi-disciplinary team with regular meetings to discuss cases and review care plans.

Once a diagnosis of dementia is made, the overall co-ordinator for services for the elderly in the relevant community care area, or district, should be notified. The care co-ordinator would then assign a case manager to meet with the person with dementia and their family to discuss and assess the care needs of the

patient. The plan would be devised in consultation with the family, the general practitioner and the relevant specialist services. Following the agreement of a plan, the case manager should be intensively involved in the process and delivery of care. The case manager would draw on the full range of

community-based services, and be allocated a budget which can be used to purchase appropriate community care services from outside conventional public sources. Part of the job of the case manager would be to visit people on a

regular basis to ensure that needs are being met and that services are introduced or modified as required. The overall goal of case management is to deliver tailored care packages suited to the specific needs of the person with dementia and their carer (Hunter et al, 1997). Ideally, the plan would be designed in such a way that it respects the competency of the carer and minimises professional involvement to the necessary provision of services.

The case manager should be a specialist public health nurse or a medical social worker with training in gerontology and dementia, depending on the local circumstances prevailing within each board. Whether specialist public health nurse or medical social worker, the case manager must have sufficient expertise, time, and resources to do the important co-ordination tasks associated with the post. Conceptual clarification and skills training will be needed before any new system of case management is put in place. Professional training is a necessary but not sufficient condition for effective case management. Case management will succeed only to the extent that the following conditions are met: resources are available to support case management decision-making; expectations are

realistic; and structural arrangements at the local level are satisfactory (Sturges, 1995). While the concept of the case manager is very important, it can only be introduced, in practice, within the framework of a more developed and

comprehensive community care system. Case management is not about reducing costs, though this may happen, but about the more efficient and

effective delivery of community care services (Kemper et al, 1987). This is the value added by case management practice.

The assignment of a case manager would also go a long way towards meeting the recent call for the assessment of carer and care recipient needs in the recent

Review of the Carer’s Allowance (Department of Social, Community, and

Family Affairs, 1998). Intensive case management, linked to appropriate early intervention and the provision of dementia-specific services, can have a major impact on the quality of life of people with dementia and their carers (Killeen, 1998). Evidence from the Lewisham case management scheme suggests that intensive case management leads to benefits for patients and carers which less intensive interventions have not been able to achieve (Challis et al, 1997). The role played by the case manager in integrating specialist mental health support with intensive home-focused social care was critical to the success of the

Lewisham scheme. The results were significant reductions in the needs of older people and clear gains experienced by the carers participating in the scheme. Given the numbers of people with dementia in the community not everyone can have this kind of service. For that reason, case management for people with dementia should, in the first instance, be concentrated on people with dementia living at home but on the boundaries of residential care. A pilot project based in two different health boards should be introduced as soon as possible to explore the potential of case management in this country. One of these projects should be based in an urban area, the other in a rural area.

5. We recommend the introduction of a case management model to co-

ordinate services for people with dementia and their carers within

geographically defined catchment areas in each health board. The model should be introduced on a pilot basis in two health boards as soon as possible.

6.4.2 Carers

The key worker recommendation does not mean that carers should be excluded from decision-making with respect to the care of people with dementia. Carers want to be directly involved in the process of care, including making decisions on the most useful services for their particular situation. There needs to be a high level of co-ordination between family carers and professional carers in order to maintain a high level of care. However, it is important that the formal

support being offered complements the care already being given by families. Family carers have much to contribute by way of diagnosis and treatment, as they are aware of the past history of the person in their care. They are the experts and they should be consulted when decisions are being made in relation to the person in their care. The ideal care plan would be designed in such a way that it respects the competency of the carer, minimises professional

involvement, while at the same time maximises the benefits and impacts of services and enhances the quality of life of the person with dementia and their carer.

6. We recommend that carers should have a major input into placement decision-making and service delivery issues.

The issue of payment for carers also needs to be addressed directly. Current support for carers via the Carer's Allowance is inadequate and only a minority of carers satisfy the strict eligibility criteria for this scheme. Caring is a multi- skilled job, involving long hours and a significant degree of stress. It must be recognised as such through the provision of adequate remuneration.

Carers have consistently expressed a preference for direct payment, not because they are greedy, but because they would like some acknowledgement from the state of the job that they do. There are well documented opportunity costs associated with caring based on the sacrifices carers make in order to look after their loved ones. Caring can also be looked at using a replacement cost

valuation of what it would cost the exchequer if family carers were not available to provide the care that they do. On the assumption that there are about 22,000 people with dementia living at home (Lawlor et al, 1994), with an estimated 60 per cent of these requiring full-time care (Ruddle and O’Connor, 1993), and assuming a replacement professional annual cost of care of £15,000 per person per year, the annual savings to the exchequer generated by carers is

conservatively estimated at just under £200 million pounds per annum.

Not everybody with dementia living at home is in need of high levels of care. It is not reasonable, therefore, to give all carers the same level of payment for caring. Payment should be linked to the needs assessment carried out by the case manager assigned to the care recipient. The full-time carers of people of medium to high dependency should receive a ‘continual care payment,’ or ‘constant care attendant allowance’ of the type suggested by the Department of Social, Community, and Family Affairs (1998) and the National Council on Ageing and Older People (1997) respectively. The new payment would be recognition of the important role played by carers in community care and would

not be means tested. The allowance would be paid regardless of means, and should not be calculated in the means test for other social welfare payments. Assuming again that 60 per cent of people with dementia living at home can be classified as either medium, or high, dependency, the number of carers

qualifying for a constant care attendant allowance would be approximately 13,000 people. The cost of the scheme, on the basis of an illustrative weekly payment of £100, which is linked to the 1998 level of the contributory old age pension plus an adjustment based on the government’s commitment to raise this to £100, is equal to £68 million pounds annually. This is approximately one third of the savings to the exchequer generated by carers on the basis of a replacement cost valuation of their work.

7. We recommend the replacement of the Carer’s Allowance with a non-

means tested Constant Care Attendance Allowance for full-time carers based on an assessment of care recipient needs and dependency made by the relevant case manager.