A number o f studies have examined whether the quality o f the premorbid relationship between carer and dementia sufferer is associated with carer psychological well-being. It is possible that feeling a great emotional bond with the sufferer allows the carer to receive more gratification from the task and to resent it less and this may be protective of their mental health. Alternatively, those carers who have had a more intimate relationship may experience greater distress as this relationship is eroded by the progressive nature of a dementing illness, so putting them at greater risk of psychological morbidity.
Horowitz and Shindleman (1983) examined 203 caregiver/care recipient pairs (9% spouses) and reported that those carers who felt more affection for the person for whom they cared had lower levels of “perceived stress”. The work was entirely qualitative involving open ended questioning and no standard rating scales. Although the care recipients had some activity limitation, no assessment was made of their cognitive functioning and most o f them did not live with the caregiver. Thus it is likely that the sample involved many subjects who were cognitively intact. However, similar findings were reported in a sample of which all care recipients had dementia (Gilleard et al 1984): those carers who rated their premorbid relationship with the dementia sufferer negatively, had high GHQ score. Alternatively, having a high GHQ score, indicating psychological morbidity may cause a carer to rate relationships negatively as part o f their generally negative thought content.
A further study focused particularly on intimacy between spouse caregivers o f dementia suffers (Morris et al 1988b). Intimacy was measured using the assessment scale developed by Waring and Patten (1984). This consists of 24 statements covering eight areas of intimacy; affection, cohesion, expressiveness, compatibility, conflict resolution, sexuality, autonomy and identity. The instrument was administered twice in order to assess both past and present intimacy. Carer mental health was measured
using the Beck Depression Inventory and a seven point self rating strain scale. A behavioural assessment of the dementia sufferer was made using the Problem Checklist (Gilleard 1984). This instrument rated the frequency and severity of 34 abnormal behaviours commonly seen in dementia such as “temper outbursts” and “repeated questioning”. Correlational analyses showed that caregivers who experienced lower levels of intimacy both before the onset of dementia and currently, had higher levels of depression and perceived strain. Those carers who had experienced a greater loss of intimacy also had higher levels of depression but not of strain. The latter finding is consistent with work relating depression to loss of any description (Parkes 1972, Bowlby 1980). Thus the study concludes that a poorer premorbid relationship or a greater loss o f intimacy are risk factors for carer depression. Finally, this study also found a negative correlation between intimacy and behavioural problems indicating that spouses were more intimate with dementia sufferers who had fewer behavioural problems. This will be discussed further in section 1.4.2.
Similar results to the above study were found in two further studies using different research instruments Brodaty and Hadzi Pavlovic 1990, Motenko 1989). In the first of these, the quality of the relationship premorbidly and currently was measured on a visual analogue scale. All premorbid relationships were rated as satisfactory but where there had been a greater deterioration in the relationship, there was an associated increase in carer psychological morbidity according to both the GHQ and the Zung Depression Scale. In the second, the author measured carer well-being according to the Deputy Psychological Well 984) which Being Index (Deputy 1 is a 22 item instrument with six sub scales measuring anxiety, depression, general health positive well-being, self control and vitality. Marital closeness, gratification’s from care giving, and the meaning of care giving was also assessed. Marital closeness was measured by asking the question “Before your husband got sick, which three people were you closest to? And now?” Gratification from care giving was measured using the question “People say that even though care giving is difficult and exhausting there are moments o f warmth, comfort and pleasure. Is this true for you most of the time, some of the time, a little o f the time or none of the time”. The meaning o f care giving was judged as being one of three: reciprocity, responsibility or tender loving care. Carer well-being was positively associated with finding gratification in care giving. Gratification was associated with marital closeness. The lowest gratification scores were reported in those who had
experienced a decline in their marital closeness, they were highest in those who continued to be close and in the middle range in those who had never been close. Gratification from care giving was also associated with viewing caring as loving and nurturing rather than as a responsibility.
On the work of Gilhooly (1984) reported no association between the quality of the relationship between carer and dementia sufferer and carer mental health as measured by the OARS. The reason for this difference in result may lie in the method for assessing the quality of the relationship. In most studies, this is measured by directly questioning the carer, but in the Gilhooly study it is rated by the author herself, on a five point scale, based on answers to unspecified questions concerning the relationship at various times during the carer’s life. It is debatable which method is preferable since, although the former seems a potentially more accurate assessment of relationship quality, the latter has the advantage of being less affected by current carer mental state.
Thus, in summary, for those who care for dementia sufferers, a good premorbid relationship seems to be protective of mental health while paradoxically, a decline from a previously high level of intimacy may be a risk factor for depression. However, as all the studies are cross sectional rather than longitudinal, the direction of causality is uncertain. It is possible that depressed carers report poorer premorbid relationships or a decline in intimacy as part of a generally negative thought content, rather than a poor relationship making a carer vulnerable to depression.
1.3.2e COPING STRATEGIES AND CARER MENTAL HEALTH
The effect of coping style on carer well-being has been studied by Pruchno and Resch (1989). They viewed coping as being either emotion focused (the regulation o f one’s emotional response to a problem) or problem focused (altering the problems causing the distress). Carers’ coping styles were rated according to a 34 item coping scale measuring wishfulness (wished you could change the situation or the way you felt), acceptance (accepted the situation and refused to let it get to you), intrapsychic coping (imagined a better time or place than the one you are in), and instrumental thinking (made a plan of action and followed it, creative problem solving). Instrumental coping and acceptance were associated
with lower CES-D scores (see 1.3.1a).
Similar findings were reported by Williamson and Schulz (1993). They considered three different “stressors”: memory deficits, loss o f communication, and the general decline in a loved one. Coping strategies were examined with regard to their appropriateness for dealing separately with each of these. Wishfulness was associated with depressive symptoms as measured by the CES-D in all categories. In relation to memory difficulties, acceptance as a coping strategy was associated with fewer depressive symptoms and direct action with more of them. Acceptance was also helpful in coping with decline of a loved one and seeking social support was associated with further reduction in depressive symptoms. Consistent with this was the finding that stoicism (keeping feelings to oneself and not letting others know how distressed you are) was associated with greater depression. The study is valuable in highlighting that coping strategies must be judged in relation to their suitability to the problem being encountered and perhaps it is the ability to use different coping strategies in a flexible way that is associated with mental well-being.
1.3.2f PERSONALITY AND CARER MENTAL HEALTH
The personality o f carer has been considered in several studies in terms o f their concept of causality and control over negative life events. Pagel et al (1985) asked 68 spouse caregivers to rate both their perception o f control and their causal attributions regarding changes in the behaviour of the person with dementia for whom they were caring. Perceived lack of control was consistently related to depression as measured by both the Beck (see 1.3.1a) and the Hamilton (see 2.2.9) rating scales. Caregivers tended to be more depressed if they thought that their spouse’s behaviour was caused by themselves. This tendency to self-blame was also associated with higher levels of anxiety and hostility. These personality traits may be associated with depression in the general population and not only in those people who care for someone with dementia (Beck 1970). Thus, caring may be the precipitant o f depression in someone who is, by virtue of personality, predisposed to developing it.
1.3.2g CONCLUSION: CARER CHARACTERISTICS ASSOCIATED WITH