This section examines the general nature of informal care and reviews research findings on factors that influence the stability of informal care arrangements, carer stress and burden. The importance of providing counselling, advice giving and training programmes for informal carers covering coping strategies and practical caring skills is emphasised.

The impact of dementia on peoples’ lives extends beyond the sufferer and includes family members, friends and neighbours who provide informal care. These informal carers face the challenge of coping with the social, intellectual, emotional and physical demands of day to day support for the person with dementia. It is widely acknowledged that informal care arrangements play a vital role in supporting people with dementia with an estimated one in seven adults in the UK involved in care giving with a dependent older person. (Challis & Darton et.al.1995)

Costigliola's (1997) study of family doctors in Europe showed that GP's recognised the importance of supporting family members. The study also found that a large minority of GP's felt that they were insufficiently informed about the range of support services available. Collaboration between GP's, family members and other professionals was generally acknowledged to be important. Following diagnosis GPs tended to collaborate first with the family, then with nurses, social workers, physiotherapists, occupational therapists, psychologists and caregivers associations, with local Alzheimer's disease societies coming last.

Dementia care services need to take into account the important role of informal carers and a sound understanding of broad issues in informal care can help care professionals to assess, understand and respond to demands for support from individual carers. Training in advice giving and counselling for professionals supporting informal carers is likely to enhance the quality of informal care for people with dementia.

The nature and location of the care setting is an important consideration when reviewing dementia services. Most people with dementia live in their own home or with family members. A large minority, around 40% of people with dementia, are estimated to be living in some type of institutional care setting. (Gordon & Spicker 1997) Richard Harvey's (1998) study found that the majority of younger people with dementia are cared for by family members at home.

The actual proportion of people living in their own home or institutional settings varies from area to area, over time, according to the availability of beds, definition used for diagnosis and in response to local and national policy changes. Consequently the number of people in institutional settings may be either an indicator of the level of acknowledged crisis in dementia care or a reflection of local tradition in dementia care, rather than an accurate representation of the prevalence of dementia in a community.

The table below illustrates the differences between English services and services in Tayside, Scotland. Differences may also have been influenced by social policy changes in England and Scotland over time.

Source: Gordon, D and Spicker, P (1997) Demography, Needs and Planning: The Challenge of a Changing Population in Hunter, S (Ed) Dementia Challenges and New Directions Jessica Kingsley

The majority of people with dementia prefer to live in their own homes and admission to institutional care is rarely desirable until the later stages of dementia. Staying at home depends, to some extent, on having an appropriate physical environment. Even with relatively minor levels of dependency there can be an increased need for housing adaptations and support in order to enable individuals to remain in their own homes.

A recent study of the housing needs of older people in South Lakeland (Cumbria County Council 1996 BRF97/44) highlights the importance of access to information about housing aids and adaptations. Throughout the project the researchers noted the lack of awareness, amongst older people, of potential sources of information on housing related issues. Even those who identified themselves as articulate and alert felt they knew very little. Pride was commonly identified as a reason for not seeking help. Equally many did not know where to look. A significant group of respondents (40%) believed there was not enough advice or information on the different types of adaptations and improvements which are readily available. Around a quarter of respondents felt that there was not enough information about the different sources of funding that are available for home improvements.

Source: Cumbria County Council Corporate Information, December 1996

It is self evident that there are differences in the type of person who provides informal care, the nature of the care they provide, individual needs and care skills. We cannot assume that the type of existing care arrangement is a reliable indicator of levels of dependency as care arrangements are subject to a range of influences such as economic circumstances, family position, family dispersal and cultural expectations. In reviewing care arrangements and carers needs we need to be aware of the individual factors that influence both needs and responses. Even so, an examination of some general characteristics can help to improve our understanding of the nature of informal care.

Victor (1997) describes two general types of carer (1) co-resident; those who live with the person being cared for and (2) extra resident, those who live elsewhere. Co-resident carers tend to be spouses and immediate family members while extra resident carers are more likely to be distant relatives, friends or neighbours. Co-resident carers typically spend an average of 53 hours per week providing care while extra resident carers spend around 9 hours per week. Clearly the level of care provided by each type of carer is different but it cannot be assumed that the level of stress or burden felt by the carer is directly proportional to the amount of hours spent providing care.

Gender distribution amongst co-resident carers is estimated at around 45% male carers and 55% female carers. The largest group of carers, 35%, is aged between 30 and 59. A further 25% of carers are over 60. Most carers over 60 are co-resident carers supporting a dependent spouse. (Victor 1997) It is likely that, since the majority of cases of dementia are age related, the majority of co-resident dementia carers are likely to be over 60. Identification of extra resident carers is more difficult although it seems reasonable to assume that most of the people in this group are younger carers.

The type of care arrangement does not, on its own, provide a reliable indication of levels of dependency but we can say with some certainty that all informal care arrangements play a vital role in supporting dependent people. Formal care services need to acknowledge this contribution and provide appropriate services to support informal arrangements. Unfortunately, the evidence that formal services provide adequate support is not strong. Only 20% of carers have regular (monthly) contact with a GP and only 15% have regular contact with a community or district nurse. Social services provision seems even less satisfactory with only 6% of carers having regular contact with a social worker and 7% receiving meals on wheels or home help. (Victor, 1997) According to Harvey (1998) younger people with dementia appear to use fewer community resources but require more costly institutional care than older sufferers.

Informal carers provide care for people with a wide range of needs and with diverse disabilities, impairments and health related problems. Those who care for people with dementia face the additional demands of coping with incontinence, wandering, and profound behavioural changes. The emotional demands of coping with the 'loss' of a partner or close family member because of memory problems and personality changes can also be very stressful. In a study of dementia care in Liverpool the average age of women caring for their husbands with dementia was 76 while the average age of men caring for their wives was 86. (Parker 1997) With many dementia carers in the older age groups there is likely to be a higher incidence of ill health amongst dementia carers than that found amongst other informal carers.

The disruptive influence of dementia on families is significant and for younger families where there are dependent children the impact can cause special problems. The economic impact may be greater for families with dependent children and the emotional stress of dementia care is likely to impact upon the dynamics of family life for parents and children. These carers will share many of the needs of carers of older dementia sufferers but they will also have additional needs related to their age and family responsibilities.

A number of themes run through the research literature on dementia care giving. Carers commonly have most difficulty coping with incontinence, over demanding and repetitive behaviour and the need for constant supervision of those in their care. Dementia carers are also more likely to suffer stress than other groups of carers. (Parker 1997)

A number of studies have highlighted different factors that contribute to carer stress levels. Gilleard, Watt and Boyd (1981 cited in Parker 1997) identified five factors that, in combination, contribute to carer stress:

• Level of Dependency
• Degree of Behavioural Disturbance
• Nature and Level of Disability
• Demanding Behaviour (repetitive questioning attention seeking etc)
• Wandering

These five factors are important in influencing the level of stress reported by the carer. All factors in combination have an influence on levels of self-reported stress but the single most important factor, according to the study, is demanding behaviour. Once this had been allowed for the researchers found no statistically significant relationship between the other factors and stress. This suggests that interventions focusing on reducing demanding behaviour or helping carers to use effective coping strategies can reduce overall levels of stress.

Although each care arrangement is, to some extent, unique it is possible to identify some general predictive indicators of carer burden. These indicators provide a useful starting point for professional support of informal care arrangements.

A number of studies (Gilleard et al 1984 and Morris et.al 1991 cited in Parker 1997, Harvey 1998) found higher levels of self reported stress and burden amongst female carers than amongst male carers. Most studies of carer stress use self-assessment measures and results may therefore reflect gender differences in acknowledgement or estimations of personal stress. Even so, the impact of stress, in many cases, will be dependent on the individuals own perception of what constitutes stress.

Individual coping strategies vary from person to person. Some carers cope by using their knowledge of the sufferer's mental capacity to distance themselves emotionally from distressing behaviours and comments. Others try to get away from the situation by using a variety of escape and avoidance strategies. Carers who use escape, avoidance, anger and denial strategies cope less well than those actively seeking information, social or problem focused support. (Harvey 1998) Professional carers can help by providing information, advice and training in coping strategies and problem solving.

Coping with the day to day demands of caring for someone with dementia is dependant upon access to appropriate and adequate internal and external coping resources (Berthold, 1997). Internal resources are those resources not under the direct control of the individual but which lie dormant until needed e.g. personal skills, life experience, psychological make up, creativity and logical reasoning. Some people have better internal resources than others because of their life experience, attitudes and general psychological make up. Improving the quality of internal resources may be possible though group work and individual counselling. External resources are those resources such as income, housing, socio-economic status, access to formal services and social support networks. These resources can be improved by external interventions such as welfare and housing benefits advice and by provision of carer support groups.

Consistency and continuity of family support networks are very beneficial to carer support (Harvey, 1998). Carers with strong, positive family support networks report less stress and burden. Distancing, loss of family support and the presence of social conflict are important predictors of burden. Unfortunately current demographic and social trends such as increased family breakdown, migration and poor access to public transport in rural areas are likely to have a negative impact on the availability of family support for older people with dementia in the near future. This will be of particular importance to South Lakeland dementia care services in the future.

Formal care agencies typically respond to calls for support from informal dementia carers by removing the person with dementia from the care setting, at least temporarily. This does not reduce reported levels of stress and burden. Carers certainly appreciate and usually request access to day care, respite and full time residential care, but these formal interventions do not appear to significantly reduce self reported carer burden. (Colerick and George 1986) (Flint 1995) Carer burden is more closely connected to the characteristics of the individual care context than it is with current service responses.

The incidence of poor physical health is higher amongst carers than amongst the general population. Deteriorating physical health is more apparent amongst daughters caring for parents and spouse caregivers and this can result in a significant increase in the amount of stress and burden experienced by the carer (Bergman-Evans 1994). It is not clear that deterioration in physical health is a direct result of carer burden. Many carers, especially dementia carers, are in the older age groups with a relatively high risk of ill health and may have pre-existing medical conditions.

The presence of adequate and appropriate internal resources has been identified as an essential prerequisite for carers. Not surprisingly, carers with a previous history of psychiatric disorder are more likely to suffer higher levels of stress and psychiatric symptoms than other carers. (Russo & Vitaliano et. al. 1995) There is no evidence to suggest that caring alone is likely to induce psychiatric disorder.

Personality is an important factor in determining the stability of care relationships. Carers who are objective about their role and relationship with the dementia sufferer cope better than those who become emotionally embroiled in care conflicts. Higher levels of stress and burden are reported amongst carers with a tendency to neuroticism. (Hooker & Monaghan et. al. 1992) Carers with a tendency to be emotionally expressive also report higher levels of stress and burden and exhibit less effective coping styles. (Vitaliano & Young et. al. 1993)

One of the most difficult aspects of dementia that many carers have to contend with is the dramatic change in personality that can occur in people with dementia. Increased levels of carer stress and burden are evident where the dementia sufferer undergoes personality change. (Vitaliano & Young et. al. 1993) Carers faced with this symptom of dementia can benefit from opportunities to discuss there feelings with other carers or care professionals.

Spouses of people with dementia may experience a lack of emotional response from those they care for and changes in sexual relations can present particular difficulties. In relationships where there has been little intimacy or emotional connection between carer and sufferer the primary motivation for care is often based on a sense of duty. Carers who rely on a strong sense of duty report higher levels of stress and burden. A loss of intimacy tends to increase the carers’ sense of duty leading to an increased sense of burden and depression in the carer. (Wright 1991)

Dementia commonly results in a progressive deterioration in cognitive abilities but the relationship between cognitive impairment and caregiver burden is not straightforward. Those who care for people with significant cognitive impairments or deteriorating cognitive capacity do not necessarily report higher levels of stress and burden. Pruchno and Resch (1989) suggest a non-linear relationship between cognitive capacity and deterioration with the greatest burden at the point of seeking outside help and a reducing burden following this point. This theory suggests that access to information and advice about cognitive changes needs to be freely available to carers at an early stage and maintained throughout the care relationship.

Dementia reduces ability to function in daily life and usually results in physical and motivational impairment. Functional disability in the care recipient does not seem to be strongly indicative of carer stress and burden. (Donaldson 1997)

Non cognitive symptoms such as mood disturbance, delusions, hallucinations, neurovegetative change and behaviour disturbance are common in progressive dementias. These symptoms are closely linked to carer burden. (Donaldson 1997) Non-cognitive changes are the most strongly linked of all patient factors to caregiver burden although their impact is mediated by caregiver characteristics.

Evaluation of studies of carer stress and burden is complicated because studies often use different definitions of stress or burden. Even where the definitions are similar the measuring tools may be different. A different and potentially more valuable approach is to explore how carers cope with the demands of caring for people with dementia and evaluate this against self reported stress and burden.

We adopt a range of strategies to help us cope with difficult situations. Our choice of coping strategy is influenced by a range of factors including our personality, the circumstances we find ourselves in and our understanding of the options available to us. Four broad factors influence coping strategies in informal care settings

• The carers interpretation of the sufferers condition and their own supporting role
• The quality of the relationship with the sufferer
• The coping strategies available and selected by the carer
• Relationships between the carer and other sources of formal and informal support

These factors provide a strong foundation for professional interventions. Attention to information and advice giving can help carers understanding of dementia, its influence on the person with dementia and their own role in providing support. Exploration of emotional issues and responses in self help groups or one to one counselling sessions may help some carers to cope with changes in interpersonal relationships. Training in coping strategies can contribute greatly to the carers’ effectiveness and alleviate stresses and tensions between carers and care recipients. Information and advice about the nature, aims and availability of support services can greatly improve relationships between informal carers and professionals and go some way towards promoting a greater sense of empowerment for the carer.

Care giving also results in some degree of gratification for the carer. Without gratification it is unlikely that any care relationship will survive. Motenko (1989 cited in Harvey 1998) has identified four important features that influence caregiver gratification

• Continuity and closeness of the care relationship
• The meaning of caregiving to the carer
• The stability of the social support network
• Patient illness characteristics

Harvey's (1998) study of younger dementia carers confirms the importance of continuity and closeness in maintaining carer satisfaction. According to Harvey, those providing care to reciprocate past attention and love derived the greatest satisfaction. In contrast, where care was provided primarily as a response to perceived duty carers felt the least satisfaction. Harvey also found that continuity of social support from others was an important factor in improving carer satisfaction levels.

Carers felt most frustrated in the early stages of the care relationship. The longer the relationship lasted the less likely the carer was to feel a sense of frustration. Rapid changes or deterioration in the dementia sufferer's condition produced most disruption and distress. These findings suggest that higher levels of formal support, advice and information for the carer, are likely to be most beneficial in the early stages of dementia when development of effective coping strategies can be more easily adopted.

There are a variety of strategies that can be utilised to support informal care arrangements: counselling, advice giving, self help and training in coping strategies have been shown to be particularly effective in reducing carer stress and maintaining home support. Mittleman's (1996) study of 206 Alzheimer's carers found that provision of counselling and self help support groups for carers postponed admission to institutional care by an average of 329 days compared to a control group. Carers without support were almost 33% more likely to place their spouses in nursing homes. Counselling support was of most benefit reducing the risk of placement in institutional care for patients with mild and moderate dementia. Mittleman's study shows clearly that a programme of counselling and self-help group support can substantially increase the time spouse-caregivers are able to care for people with Alzheimer's dementia at home. This is particularly true in the early to middle stages of dementia when nursing home placement is generally least appropriate.

Many carers, particularly older carers in rural areas, have difficulty attending support groups because of the demands of the care relationship and transport problems. Attention to issues such as transport or short term respite support to enable people to attend groups would improve this situation. Internet, video conferencing and email facilities can also be utilised to improve access to carer support groups and individual counselling and advice. (CANDID 1999)

Most informal carers have little or no experience of professional care work. They often find themselves trying to provide care for the person with dementia without a basic knowledge of the medical condition, support services or care strategies that they require in order to provide effective support. There is an acknowledged need to provide training for non-professional care workers in the UK. Unfortunately, current provision continues to be inadequate for the growing demands on the sector. The benefits of carer training, counselling and access to information have yet to be fully exploited in dementia care. The research evidence is clear, with around 60% of people with dementia supported by informal carers, the cost benefits for formal providers of funding carer training and counselling support are obvious.

Surveys of carers needs provide a starting point for the development of training programmes. Berthold (1997), surveying older people's needs, found that carers felt they needed training and information about:

• support services
• basic care skills
• action to take in case of emergency
• technological and specialist interventions

Berthold’s study provides a basic insight into carers own perceived training needs while a Belgian initiative, ‘The Family Coping Project’, (EACH website 1999) provides a theoretical foundation for training programmes to help carers to develop their personal coping resources.

It is evident from the studies discussed earlier that carer personality factors are closely related to levels of self-reported stress and burden. In its research phase The Family Coping Project investigated the relationship between situational and personality factors and the burden of care. The original study found that a strong ‘Sense of Coherence’ is consistently linked with resilience, protection from breakdown, adaptive coping, better use of resources and less use of maladaptive coping strategies such as use of drugs or alcohol. Sense of Coherence is a feature of personality defined as the extent to which an individual; has a pervasive enduring and dynamic feeling of confidence that internal and external events are, to some extent, comprehensible, manageable and meaningful.

The European Alzheimer Clearing House (EACH) developed The Family Coping Project to put some of the original study findings into practice. The project provided training and counselling support for dementia carers based on the principle of Sense of Coherence. The project aimed to help carers establish and maintain a strong Sense of Coherence by providing training and support that helped carers to view the care tasks and challenges as:

• Comprehensible- events make sense, information and ideas about abilities, behaviours and interactions are clear, consistent and structured rather than chaotic, random and unpredictable.
• Manageable- coping strategies and resources are available and can be accessed to adequately meet the demands of the situation
• Meaningful- life events are meaningful. Problems and demands are perceived as challenges rather than burdens

Evaluation of The Family Coping Project confirmed the original research findings that:

1. The psychosocial consequences of caring for a person with dementia are different from those of non dementia care
2. Carers with a strong Sense of Coherence were less likely to display symptoms of burden such as poor self-esteem and 'burnout'.

The Dementia Services Centre at the University of Stirling has put forward principles for good practice in dementia care. (Marshall 1997) The principles, formulated from the results of research, practice experience and observation of service provision, can be used to provide a foundation for service planning and delivery.

According to these principles care facilities and services should be:

• designed with the needs of dementia sufferers and their carers in mind
• small in scale in order to provide environments that are more personal and less institutional
• affordable, locally provided and accessible to the physical and cultural needs of users
• provided in the users home setting where possible
• flexible and responsive to the differing needs of people with dementia and their carers
• capable of responding in a crisis
• based on a knowledge of the individual
• training, informing and empowering people with dementia, their carers, care staff and volunteers.

A Danish model for dementia care, cited as an example of good practice in dementia care by the European Alzheimer's Clearing House (Marshall 1997), sets out three levels of care intervention. The Naesteved model identifies areas of interest for people with dementia, informal carers and care staff. The model provides the basic framework for applying good practice principles in dementia care.