Using informal education – Chapter 8: working with carers

[page 100] Community care policies have encouraged people suffering from dementia to be supported in the community rather than institutions. This has highlighted the important role played by carers and the pressures placed upon them. With the marked rise in the numbers of people aged 80 between now and the end of the century the need for additional professional support for carers has become more widely acknowledged. Yet as the Department of Health and Social Security (DHSS) stressed to the local authority sector, their expected role will be to ‘sustain and where necessary to develop but never to displace such support and care’ (DHSS 1981: paras 1—9). This policy has been translated into practice by local authority Social Services Departments (SSD) in a number of ways.

The provision of formal services such as home helps, specialist day and respite staff can play a substantive role in preventing the build up of stress in carers (Levin, Sinclair and Garbach 1983). Such resources are often inadequate, over-stretched, geographically inconvenient and too inflexible to provide the ideal type of support a carer needs. However, where available and flexible they can and often do provide positive support. Community care policies have generally led to the enhanced deployment of a variety of staff with a remit to provide support for carers. Within this category can be included home helps, residential staff and field social workers. It is the service provided by this latter group which is to be the central focus of the chapter.

Field social workers operate from many varied settings and, given the pattern of employment policies within these, are often able to adapt and reformulate the style and content of the service they deliver. It is therefore not without risk to make generalizations. There is a wide variety of intervention which can be offered by field [page 101] social workers, including individual casework, family therapy, group and community work. For the purposes of this chapter I will concentrate on individual casework and group work and the potential they offer for informal education. In group work this tends to take the form of relative-support programmes, where carers can meet to discuss their common difficulties and offer one another support. Within this chapter I will be attempting to establish whether these two modes of intervention encompass elements of informal education and what advantages and or problems this brings when informal education is not the primary means of intervention.

Behind the rhetoric

The publication of a number of horrific accounts of institutional care (Townsend 1962; Robb 1967) neatly coincided with a general thrust in government policy towards the notion of ‘community care’. It became popular among professionals as a perceived alternative to dehumanizing institutional care and with government ministers as a potentially cheaper option (for a discussion of the policy issues and debates surrounding the expansion of community care see K. Jones 1989). What needs to be stressed was the almost universal belief that, however ill defined the term, community care and care in the community for elderly people was preferable to that offered in institutions. Yet beneath the rhetoric lurked the reality that community care was largely care by families and overwhelmingly by women (Ungerson 1987), care which was to be undertaken with scant improvement in community-based services to help them to undertake the task. It is a situation highlighted within the Griffiths Report (DHSS 1988: para 9).

Community care has been talked of for thirty years and in few areas can the gap between political rhetoric and policy on the one hand or between policy and reality in the field on the other hand been so great.

This report proceeds to recommend the creation of a minister and department with clear responsibility for community care to ensure that domiciliary and institutional care for the elderly and their carers are organized in a coordinated manner under the auspices of the local authority, with a structure that ensures the establishment of a single agency within a locality, which will be responsible for adequate service provision and which the carer can approach for services.

The operational structure of most SSDs, with respect to field [page 102] social workers, operates via a referral procedure and individually held caseloads. This has meant that the contact of the majority of carers with this agency is pre-eminently through casework. Ideally this can offer carers a one-to-one supportive relationship in which They are able to explore the nature of the illness of the persons cared for; their response to caring; and the services that are available to enable the carers to cope with a profoundly difficult problem. It is a service which can be highly individual and tailored to carers’ needs and which offers them direct access to professional advice and support. However, the lack of a statutory basis for involvement with this client group, coupled with the increase in the volume of work and staff reduction within SSDs in recent years, has meant that such a casework service is not always available. Group work, by providing mutual support for carers through the exchange of ideas and the development of networks, has been used to great advantage in this area of work. It would be wrong to see the two modes as simply alternative. They are best seen as complementary, part of a continuum of support, able to operate both independently and in tandem to give the carer the support necessary to deal with the demands of the task.

We are currently experiencing a rise in the number of older people aged over 80 at a time when the overall numbers are beginning to fall. This shift in the balance of the elderly population is significant because it is among the older age group that the highest incidence of dementia occurs. Research has indicated that as many as 22 per cent of those over 80 suffer from dementia (Kay et a! 1964). Dementia, which includes Alzheimer’s Disease, progressively destroys the cells of the brain (Gray and Isaacs 1979). This leads to problems with self-care, memory and decision making. As the disease progresses these tasks may be increasingly assumed by spouses, children, friends and neighbours — people generally referred to as ‘informal carers’.

Webb (1987) highlighted the extent to which carers (not exclusively those caring for someone with dementia) are isolated and highly vulnerable members of the community in terms of their own health, career prospects and income. Personal accounts from carers (Gilleard 1984; Mace and Robins 1981; Wright 1986) all graphically illustrate the debilitating effects of the tasks they undertake. Both the research and the accounts portray the frustration, isolation, guilt and anger experienced by so many, as well as the negative effect their role has upon their own health, privacy and life chances. Many carers wish to continue with their task but with some recognition and [page 103] financial remuneration for their contribution. Addressing these issues requires a change of political will and is not the direct concern of this chapter. What is important is the extent to which it is possible to improve access to existing provision among carers and to provide the best possible levels of support for them within the current climate.

Can informal education, through the media of casework and work with relatives’ support groups, play a role in enabling carers to perform their task? Initially both interventions are viewed as establishing a relationship between worker and carer, and carer and carer, in which the primary focus is support. By support in this context I mean the process by which social workers enable carers to unravel the complex emotional and practical issues their situation involves. This support can take a variety of forms: one-to-one counselling; information and advice giving on such matters as benefit entitlement; arranging the provision of practical services; and offering the carer the opportunity to learn about the nature of dementia and its effects on the sufferer and the carer. If we look at each in turn, we can see elements which are present in the process of informal education (Smith 1988: 134—49). The important point to stress here is that the boundaries of the work and intervention clearly intrude, at all levels, into an educational arena, transcending that of the mere provision of a supportive service.

Casework and informal education

On the basis of the discussion of informal educational methods already mentioned, and in the introduction to this book, it can be seen that casework, as normally understood by social workers, offers opportunities for such interventions. Casework and, more specifically, the elements of practice that might be considered as educational, takes place in a variety of settings: the carer’s home, the hospital unit, if the person with dementia attends for assessment or a residential home, if the person with dementia attends for day care or regular respite care. In all these settings the carer is exposed to different professionals, medical and nursing staff, residential and social workers all of whom can offer information, advice, education and generalized training in the care of those suffering from dementia and in recognizing personal needs. Each professional in an individualized way, for example, the workers in a residential home, provide a vital link for carers in sharing the task of caring. They are able to discuss the management of behaviour and through this [page 104] interaction the residential workers can come to perform an educative role even though this may not be perceived as being their primary function.

Education implies that the process of learning is deliberate and purposeful and that the people concerned are seeking to acquire knowledge (see Chapter 1). In the casework relationship this is not always the case. Carers may prefer not to know or may even ignore the existence or scale of a given problem in the hope that it will go away. This highlights a conflict in orientation between the educator and the caseworker. The informal educator assumes that the learner wishes to attain knowledge or some skill or attitude. That is to say they possess some autonomy or choice about the matter and positively elect to learn. The object of the learning may not be clearly recognized by any of the parties. It is unlikely to take the form of a neat package of learning objectives. It will rather consist of a generalized wish to ‘know more’ about an identified area. The caseworker may be in a position of having to persuade the carer to accept particular training or to acquire certain knowledge, some of which may be unpleasant, uncomfortable or challenging. From the perspective of the caseworker this is undertaken in the interests of the carer’s well-being as well as that of the person with dementia. Participation in the process of learning may not therefore always be voluntary and this can entail difficulties for the caseworker. How far should someone be persuaded to learn and acquire knowledge that they do not want? The process of getting the carer to acknowledge the need for learning may be the initial focus of intervention. Indeed it may be the only role performed by the caseworker as the sub-sequent educational experience can take place outside the boundaries of this relationship. The transmitting of information and the enabling of learning may not be achieved in the short term.

All this is not without inherent risks and certainly does not have to be undertaken by the field social worker. Indeed some people may find that other professionals such as doctors or community psychiatric nurses are a more helpful and appropriate source of information. The process of giving information in the casework relationship may intensify the carer’s sense of resentment towards the person with dementia. For not only do they have to cope with the mechanics of caring but they are also ‘expected to understand all this new information’. This learning can also create a watershed in the relationships between all parties when the knowledge spells out the real extent of dependency. In saying this we should not lose sight of the fact that similar problems and tensions can arise in the work of informal [page 105] educators in other settings. They do not enter professional relationships on a value-free basis. However, many do not have statutory responsibilities of the social worker and are hence potentially freer when making interventions to focus on the client.

In individual casework — where time constraints allow — the timescale of learning can vary depending on the needs of the carer. Some carers may opt to engage in an immediate and intense learning experience. Others chose to develop their learning according to the demands of their situation. As a result the timescale and pattern of learning can be idiosyncratic. Given this and other factors, the learning must inevitably take a variety of forms. Within this setting flexibility is not an optional extra but an essential precursor for success.

The individual casework relationship is an ideal medium for addressing the cultural expectations placed on carers as well as their wider social system, network and cultural norms. Interventions and content must to a degree, therefore, be tailored to match consumer expectations — something which is additionally difficult in more formal educational channels. Often those who are most likely to be carers, that is to say women (Lewis and Meredith 1988), are those for whom it is most difficult to utilize the more formal channels of education because of the very demands placed on them by their tasks. Attendance at an evening class is possible only if you have the money to pay, the time to go, adequate transport, public or private and access to a competent sitter. Cultural expectations can often prohibit women from using these channels unless these and other deeper issues linked to gender oppression are addressed. Intervention via the casework relationship, it must be stressed, can be adapted to the carer’s social system and network. If the carer is isolated then discussion can focus on how this isolation can be reduced and alleviated, on how to get help from sources untapped or under-utilized such as churches and neighbours.

Limitations of the casework approach

There are a number of limitations to the purely casework approach in work with carers. It can be expensive of worker’s time. It relies heavily on the knowledge and competence of an individual social worker. Given the rise in specialist workers in SSDs, there are now a growing number who have a sufficiently extended degree of competence, interest and concern for carers to undertake this form of intervention. However, this is not always guaranteed and carers may [page 106] receive a less than adequate service if they are totally reliant on social workers for learning opportunities. The casework relationship also reinforces their isolation for it is unlikely to introduce them, as a matter of course, to other carers. Some social workers and managers may wish to keep carers isolated: individual clients are much less prone to challenge service providers. Isolation can therefore function as a useful mechanism for rationing resources. Such limitations are familiar to practitioners and have often been the impetus underpinning other methods of intervention such as relatives’ support groups. However, there are a number of difficulties in establishing group work practice especially in what is essentially an individual casework agency dominated by an orientation towards the individual.

Group work in SSDs is often perceived as something ‘extra’ undertaken by social workers in addition to their existing casework. Where group work is seen as valuable, it may be taken into account as part of a social worker’s workload. However, this is not always the norm and this type of intervention has become increasingly threatened by reductions in resources through rate-capping. In most SSDs this has encouraged a concentration on statutory work, especially given the publication of a number of ‘critical’ reports and legal inquiries on their handling of child care issues.

Where social workers have sought to establish relatives’ support groups they often encounter resource difficulties such as the lack of suitable premises, funding and the time to effectively organize the groups. In view of these difficulties it is to the credit of many workers that so many relatives’ support groups have been established and continue to operate successfully. Not surprisingly in cases where the same worker undertakes both roles — combining a casework with a group work service — conflict may occur.

The problems of undertaking both roles are clear. The carer may feel unable to criticize the service given by the social worker in light of new learning undertaken in the group setting. The level and type of learning gained within the group may be a repetition of what has already been achieved within the casework relationship. The carer may feel uneasy about revealing negative attitudes towards the sufferer in front of the worker. Yet there are advantages in undertaking both roles. One is that the social worker and carer are partners within the group and can share a mutual learning experience which may alter the parameters of the power relationships between them. An exchange of ideas between them can potentially restructure their relationship to the benefit of both. Where social workers undertake [page 107] responsibility for the running of the group they are more likely to be sensitive to the particular problems faced by the carer. They may consequently be able to influence the curriculum of the group to ensure that it addresses particular learning needs. The process of informal education can be continued into the group setting in a way which is compatible and consistent. It can further be argued that this consistency is crucial as it offers carers an identifiable person who is aware of their particular problems, to relate to. However, whether the work is undertaken by the same person or not is often a question of resources, interest and commitment rather than choice.

Relatives’ support groups as a medium for informal education

The relatives’ support groups we discuss here are for those who care for people with dementia. Such groups are well established throughout the country and are run by a variety of practitioners, social workers, nurses and occupational therapists. The groups seek to encourage mutual support for carers and provide a forum for discussion on causation, treatment and management of dementia. In what way do these groups comply with the model of informal education?

Attendance is voluntary: carers opt to join although they are often initially unclear as to what they will get from the group. Meeting other carers facing the same difficulties as themselves and having the opportunity to share similar problems are often the main incentives. The group can be held in a variety of settings — a community centre, the lounge of a sheltered housing scheme or a room in a hospital. None of these venues has an overt educational function. The group can also be community based and bring together carers living in a particular neighbourhood. Alternatively, it can develop as a consequence of an attachment to a particular organization such as a day unit or residential home. As far as timescale are concerned a survey of literature (Rawlings and Peacock 1986; Lodge and McReynolds 1983; Linge 1986) on the development and organization of relatives’ groups indicates two general models: a short-term group which will meet over a period of 8—10 weeks for up to 1.5 hours per week and a long-term group which tends to operate on a monthly basis. Both aim to provide support and education for carers.

Short-term groups often have a structured programme of topics, speakers and discussions to be addressed within a given time span. The content of the programme can be designed to take account of the [page 108] particular problems faced by individual carers and will often include inputs from various specialists such as psychogeriatricians, community psychiatric nurses, psychologists and welfare rights officers. The course content need not be fixed and is often tailored to address the particular needs of the carer. If one carer is facing a problem with incontinence then this topic can be covered. Such flexibility enables particular problems to be addressed in a manner which would not be possible in a more formal setting. The curriculum can be structured to meet the expressed needs of the group. It can also be organized to take account of the particular life—style and social network of the carer and sufferer, e.g. a sitting service can be made available if the sufferer is unable to be left. This is often essential for the lack of such provision often prohibits carers from making use of more formal types of educational provision.

It is not only the provision of a sitting service which differentiates this type of education from that offered within more formal channels. The setting of the group in a lounge of a sheltered housing project or the day room in a hospital assessment unit, both with the availability of comfortable chairs and refreshments, helps to generate an informal atmosphere. People are not sitting behind desks, as they would be in a classroom environment. The emphasis is on informality and ensuring that participants feel comfortable enough to be able to discuss often highly personal and painful experiences. This would be difficult to achieve in formal and institutional settings. The style of leadership is equally important. Leaders play a key role in encouraging an informal but structured atmosphere — a balance which can be difficult to achieve. Professional leadership should not be assumed to be a permanent feature, for these groups are often a prelude to informal meetings organized by the carers themselves.

Such groups provide a forum which mixes support with education. They allow the carer legitimate time away from the sufferer while partially serving to fulfil their own social needs. Almost by definition it is difficult for carers to make full use of social and recreational facilities without the availability of adequate sitting services. Elements of self-help and support can therefore form an important aspect of such groups. By encouraging participants to talk freely about the difficulties of caring for someone with dementia they are able to offer mutual advice on particular problems. Through involvement in the group work process participants are simultaneously engaged in the process of learning for themselves while educating other carers. This support can and often does exceed the boundaries of the group, e.g. carers will contact each other between [page 109] group sessions. It is certainly much rarer for the mutual support generated through the informal nature of the group to be an element within more formal educative processes.

The prime medium of exchange in the group tends to be dialogue: between carer and carer, between group leader and carer and between guest ‘speaker’ and carer. Dialogue in this setting not only offers participants the opportunity to expand their knowledge of themselves and the problems they are dealing with but also offers access in an informal setting to various professionals. Service organization has traditionally tended to militate against informal access to professionals. Involvement by them in this type of education makes them much more accessible to service consumers. Comments and criticisms of local authority and NHS provision are usually channelled through formal bodies such as councillors or community health councils. Meeting service providers in an informal setting not only provides an alternative opportunity for questions to be answered but also the chance for consumers to engage in a dialogue. The learning process is consequently not all one way. Comments, advice and complaints from carers in this setting all encourage professionals to both question and amend their practice.

An example of the two-way process inherent within this type of informal education has been the development of a carer referral system linked to an assessment service for people suffering from dementia. In seeking to improve their practice one local assessment unit organized a public meeting, to which both carers and professionals were invited, in order to sound out opinions on future service development. On the day, only professionals turned up. To redress this balance an additional meeting was arranged targeted solely at carers and a sitting service was provided. From this meeting, which attracted a substantial number of carers, it was established that what they wanted was a means whereby informal access to professionals, who had some knowledge of dementia, might be facilitated. As a direct consequence a ‘drop in/self—referral’ system was established which offered carers in the given locality such access to professionals. This service not only allowed a much greater degree of professional accessibility, but for the first time such contact was not dependent upon a carer’s ability to convince a service giver of immediate need. The process of mutual discussion and dialogue was a key factor in changing the style of service delivery to forms and content which the carers themselves felt was most appropriate to their needs.

Developments such as this highlight the ways in which the process [page 110] of informal education can lead to change. It also illustrates how dialogue can blur the roles between professionals and carers. It has been notoriously difficult for service consumers to establish access to those forums which possess the capacity to initiate or influence policy and practice. The providers and planners of services are usually remote from the consumers. By tapping into the local network of carers, the unit in question was able to develop forms of service far closer to the expressed wishes of the carers. Informal education through relatives’ support groups had a direct impact upon both the content, style and quality of service delivery — a pay off rarely achieved via the use of more structured formal education.

The role of the leader or worker as facilitator in this type of group is crucial to group cohesion and mutual support. Although the emphasis may be on informal learning, group leaders need to have a clear appreciation of the aim and purpose of the group. It is important that the group leader is in a position to direct the group when ~circumstances dictate — for example, if the individual problems of one carer dominate the group. The informality of such groups can give the false impression that they can run themselves without structure or organization. This may be the case but it cannot be taken for granted and the group leader must be prepared to undertake, as a minimum, responsibility for practical arrangements and be aware of the need to offer a sense of direction and guidance until the group is sufficiently well established to assume control over these areas.

Organization of time, programme and the curriculum of the group so that it can be responsive to the learning needs of the participants must initially reside with the group leader. In the short-term group these elements will tend to be tightly controlled in order to give the group sufficient structure to enable it to function. As the group becomes more established, responsibility for the curriculum can be assumed by the carers. Indeed, the very idea of there being a curriculum as such may disappear (see Chapter 1). This can happen much more readily in an established group. The focus of this type of group tends to be labelled ‘support’, with ‘education’ apparently playing a secondary role. In many respects, this can be seen as a clear signal that the group is moving towards a more informal mode of operation. There is a transition here which has to be managed and enabled. The danger is often that the educational needs are lost sight of in the process of change; in other words, the shift is not so much between support and education, as from formality to informality. The organizational structure of the long-term group may be similar to that of the short-term group but the [page 111] timescale and curriculum content need to be much more flexible if it is to take account of the expressed learning needs of the carers.

Advantages of group work for carers

Participation in a relatives’ support group creates the opportunity for establishing mutually supportive informal networks. These have enormous potential for helping to relieve and reduce isolation. They further offer the opportunity for carers to participate in a process of informal education which can be responsive to their learning needs. They can decide what area/topics to discuss and they can assume increasing responsibility for the curriculum as the group becomes more established. The flexible time structuring of the group can be responsive to the demands of individual carers; the structuring of learning is therefore entirely dependent on the needs of the participants. This ensures a high degree of responsiveness and mutual learning between group leaders and carers. Informal education through group work offers the carer the opportunity to participate in an educative process which is much more responsive to needs than the usual channels of education, which can very often be rigid about such issues as timing and attendance — a rigidity which the carer may find difficult. The flexibility of informal education through group work and the attention to practical matters such as a sitting service enable the carer to participate in a way which other educational practice prohibits.

Ideological difficulties for the social worker

Should social workers be involved in the process of education, even on an informal level? Social work training concentrates on developing specific methods of intervention, forms of service provision and the implementation of legal responsibilities. The role of social worker as educator is not overt; so is it legitimate for social workers to be involved in this type of work? As we have seen, social workers have skills and knowledge to offer which fit into the model of informal education. Through the culling of elements drawn from both casework and group work they have the capacity to offer a service to carers that enables each of them to participate in a learning situation tailored to their needs outside formal educational channels. Even though education may not be seen as the primary focus of social work or the central role of social workers both it, and they, can nevertheless play a key role as educational providers. This is not [page 112] unproblematic for either the agency and worker, not least because the informal educational process will almost inevitably bring a number of conflicts to the surface. The demands and expectations of carers are likely to be raised. Hard-pressed departments are increasingly likely to find it beyond their capacity to satisfy such expectations in the short term. The primary responsibility of social workers is the implementation of statutory responsibilities and their role as educators must dovetail with this. Increasingly it is the implementation of these statutory responsibilities, especially in the field of child care, which threaten to curtail the opportunities for social workers to carry out work which is not a statutory responsibility. Yet if social work is to avoid becoming a fire brigade and solely reactive service, it is essential that informal education programmes are initiated and encouraged.

© Pauline Gertig 1990

Reproduced with permission from Tony Jeffs and Mark Smith (eds.) Using Informal Education, Buckingham: Open University Press.

First published in the informal education archives: February 2002.