MÉTODOS DE SÍNTESIS DE MATERIALES CERÁMICOS

Whilst some people in the more advanced stages o f dementia are placed in nursing homes, the majority o f people (particularly in the earlier stages) live at home with their families. Family members (most fi*equently spouses) provide most o f the care that is needed, which

can lead to considerable stress. The chronic, progressive nature o f dementia means that these stresses may persist for several years, as there is increasing dependency on others to fulfill basic needs. As the disease progresses there may be new and complex challenges for the carer. Some studies have reported increased carer burden with higher care recipient impairment (e.g. Pearson et al., 1988), however Zarit et al. (1980) found that carer burden was not related to severity o f cognitive impairment, behavioural problems or fimctional impairment. Therefore, although it seems that carer burden is influenced by the status of the person with dementia, there are individual differences. It seems that caregiving is a complex process involving multiple variables.

Pearlin et al. (1990) conceptualise caregiver stress as involving multiple variables: background and contextual factors (such as the quality o f the pre-morbid relationship and socio-economic resources) and primary and secondary stressors. Primary stressors are considered to be stresses directly related to caregiving, and are therefore linked to the cognitive status o f the patient, behavioural problems and level o f functioning in everyday tasks. Primary stressors may lead to secondary stressors, as stress encroaches on other areas o f the caregivers’ life. The carer may experience role strain as stress is experienced in other areas (e.g. family conflict, work, social roles). If there is considerable change in the caregiver’s roles and if the identity and life o f the caregiver have been closely bound to that o f the patient, there may also be damage to the caregiver’s self-concept. Pearlin et al. (1990) label this intrapsychic strain. The model highlights coping and social support as variables, which mediate at different points in the stress process. Within this model, unawareness on the part o f the patient could be viewed as increasing carer burden at

Chapter 1: Introduction

different levels. Lack o f awareness may mean that the individual with dementia is resistant to help and support from their carer. This would lead to an increase in primary stress as providing help and assistance is probably more difficult when someone is resistant and thinks that they are still capable o f functioning independently. Reduced awareness in the patient may also increase carer burden by having an effect on the mediating variables o f coping and social support. It may be that the carer previously coped with difficulties by gaining emotional support from the care recipient, however unawareness on the part o f the individual with dementia might reduce opportunities for such discussion and emotional support.

Vitaliano et al. (1991) consider similar variables in their conceptualisation o f carer burden:

^^Distress (burden) = exposure to stressors + vulnerability

psychological resources + social resources^''

(p. 392, 1991) Within this model, unawareness may contribute to burden at the level o f ‘exposure to stressors’, which are thought to include factors such as impairment in the patient as well as other life stressors. As discussed in Pearlin’s (1990) model, unawareness in the patient may also affect coping strategies open to the carer, which in this model would involve a decrease in ‘psychological resources’.

The relationship between patient unawareness and carer burden has received only limited attention, however existing studies provide empirical support for a link. Although

DeBettignies et al. (1990) found that unawareness was associated with higher levels o f carer distress, the study only considered awareness o f impaired independent living skills. As has been discussed earlier, in dementia there can be difficulties in a number o f domains o f function, and therefore there can be a number o f ‘objects o f insight’. Seltzer et al. (1997) consider the relationship o f carer burden with unawareness o f memory deficit, self- care skills and social function. Increased carer burden was found to be associated with unawareness o f memory deficit (irrespective o f disease severity or duration) but not unawareness for self-care skills or social function. The authors suggest that this may be due to relative preservation o f these skills in their sample o f people with mild to moderate dementia.

Empirically, there is support for the mediating effect o f social support (e.g. Zarit et al., 1980) and coping strategies (e.g. Vitaliano et al., 1991) on carer burden. There is also evidence for a relatively high incidence o f mental health symptoms (depression and anxiety) in carers (Vitaliano et al., 1991). Depression could be conceptualised as an outcome o f caregiving. However, the circular interactive nature o f the process also means that depression and anxiety could be a vulnerability factor for increased levels o f burden. Models such as that o f Pearlin et al. (1990) hypothesise that the quality o f the pre-morbid relationship between carer and care recipient is relevant to carer burden. Indeed, it could be hypothesised that conflict or lack o f affection or closeness in the pre-morbid relationship may reduce a relative’s willingness to be a carer, and increase resentment about the personal sacrifices involved. Williamson & Schulz (1990) found that carers who

Chapter 1 : Introduction

had enjoyed a close relationship with the patient prior to the onset o f dementia felt less burdened.

The role o f the patient’s unawareness in carer burden has not received considerable attention. However, a link between these variables would indicate that unawareness (whether it is due to neurological or psychological factors) has clinical implications for family caregivers as well as the individual with dementia in terms o f clinical management. Therefore, as an adjunct to the study o f the role o f psychological and interpersonal factors in unawareness, the relationship o f awareness to carer burden will also be considered. As carer burden has also been found to relate to the quality o f the pre-morbid relationship, symptoms o f depression and anxiety in the carer as well as disease severity o f the patient, these variables should be controlled for in the analysis.