EUROPEAN PAPERS ON THE NEW WELFARE

Caring for a Family Member with Dementia: Evidence from a Cross Sectional Comparative Study on Caregiver Burden and Psychological Well-being

4. Discussion

The main aim of this study was to further explore the hypothesis that dementia caregiving has a stronger impact on caregivers than non dementia caregiving. The results provided support to this hypothesis: once the effect of potentially influential factors has been taken into account, dementia caregivers were still found to show higher levels of stress and depression than non dementia caregivers. Thus, the results of this study strongly support the view that caring for someone with a dementing illness may represent, to some extent, a different experience from caring for someone physically ill but lucid, and that this experience leads the caregiver to more negative consequences.
The reasons why dementia caregivers were found to show higher levels of stress and depression remain speculative, since we did not test them directly in our study. However, on the basis of previous research we can put forward possible explanations to shed light on our results. We assessed caregivers’ stress by means of the Relative’s Stress Scale (RSS), which focuses on the amount of strain and upset experienced by family caregivers of elderly relatives, tapping in its items several aspects of the emotional response of the caregiver. According to a widely shared cognitive model (Lazarus and Folkman, 1984), which has also been tested in the caregiving process (Kane and Kane, 2000), stress increases when an individual perceives a lack of resources to stem an environmental demand appraised as threatening. Thus, our finding that dementia caregivers scored higher on the RSS than non dementia caregivers, suggests that they more consistently perceived a lack of resources to meet their role demands. Since we controlled for the most influential contextual factors, we can hypothesise that the causes of the added stress showed by dementia caregivers may be sought in the peculiarities of the dementia caregiving relationship.
Dementia is a progressive disorder which leads to the inexorable dissolution of the patient’s personal identity. This means that, over time, reciprocity is greatly reduced in the caregiving relationship, with the possibility that even affection becomes finally unidirectional (Nagaratnam, et al., 2001). In these circumstances, it may be difficult for the caregiver to appropriately meet the cared-for’s needs (Woods, 2001) and, as a consequence, the caregiver may end up losing the benefits associated with his/her role. This has been reported as a highly stressful experience (Pearlin, et al., 1990), often associated with feelings of entrapment and guilt (Martin, et al., 2006). We believe that virtually all dementia caregivers in our study found themselves in these circumstances, given that all dementia patients suffered from a severe cognitive impairment and were presumably at one of the latest stage of the dementia process. Thus, this may explain the higher levels of strain showed by dementia caregivers.
If this explanation holds true, we would have expected to find also a significant difference on subjective burden between the two groups of caregivers. To the contrary, though dementia caregivers showed on average a higher score, the difference did not reach a statistical significance. However, it should be noted that we did not obtain a satisfactory internal consistency for this scale, which means that these results may not be deemed completely reliable.
As a further explanation for our findings, which also fits with the proposed cognitive model of stress, it can be thought that the dementia patients showed a consistent extent of behavioural problems. Such problems (e.g. wandering, agitation, aggressive behaviour) have been convincingly linked to caregiver stress and mental health (Hooker, et al., 2002; Pinquart and Sorensen, 2003). Since we did not take a measure of behavioural problems, we could not estimate the magnitude of their effect, and it is conceivable that a number of care recipients in the non-dementia sample actually had early dementia and might have been showing such symptoms, leading to a certain degree of burden in their caregivers, thus reducing the differential existing between the two subgroups. However, behavioural problems tend to decline as dementia progresses (McCarty, et al., 2000) and thus, keeping in mind the characteristics of the patients in our study— who were all at an advanced stage of the disease — we can consider that the effect of behavioural problems has been somewhat limited in our results.
In brief, despite the fact that the hypotheses we put forward may shed some light on our findings, it remains to be seen in future research why dementia caregiving is comparatively more stressful than other types of caregiving.
We assessed caregiver’s depression by means of the scale developed by Zung (1965), which continues to be used in studies of older adults (Kane and Kane, 2000). Depression has been defined as persistent sadness and decreased interest in pleasure activities. The items of the Zung’s scale, which have been derived from the clinical observation of depressed patients, include a number of psychosomatic symptoms associated with the disorder. Previous research (Hooker, et al., 1998, 2002) repeatedly found a causal link between stress and depression, so our results that dementia caregivers showed a higher frequency of depressive symptoms, may be seen as a consequence of their higher levels of perceived stress.
The findings of the present study are not in line with those that found no difference between dementia and non dementia caregivers (e.g. Canadian Study of Health and Ageing Working Group, 2002; Tommessen, et al., 2002). However, the findings of this study are at the same time less extreme than those reported by some other studies (Clipp and George, 1993; Holmen et al., 2000; Ory et al., 1999), in which clear cut differences between dementia and control caregivers were found on multiple indicators of well being. There may be a number of reasons for the inconsistency of these results. In our opinion, one of the most important reasons is that a detailed preliminary description of the dementia and non dementia dyads was not always carried out in previous research (e.g. Draper, et al., 1992; Hooker, et al., 1998), with the consequence that caregivers’ characteristics such as extent of involvement, income, gender etc., but also patient characteristics, could not be taken into account. In a study in which such a detailed description was carried out (Ory, et al., 1999), the comparison between dementia and non dementia caregivers was entirely based on nonstandardised (and single-item) measures of well-being, which means that the results may not be considered entirely reliable. Moreover, in a number of circumstances studies focused on too few caregiver outcomes (e.g. Draper, et al., 1992; Tommessen, et al., 2002), and this means that different areas pertinent to caregiver well-being remained unexplored. Our study overcame such a disadvantage, and may thus be considered an important contribution to the current research in this area.
However, our study has a number of limitations too, which need to be borne in mind when generalising its results. First of all, like most previous research in this area, our study employed two relatively small samples of dementia and non dementia caregivers. Thus, the power of our statistical tests was reduced, which means that we may have not been able to detect more subtle differences between dementia and non dementia caregivers. Moreover, we focused on two clearly distinct groups of cared-for persons: dementia patients with a severe cognitive impairment vs. non dementia patients with intact cognitive abilities. In other words, we did not include dyads in which the cared-for had either a mild or a moderate cognitive impairment. We deliberately did this to avoid placing false negatives among the non dementia dyads (this is an issue to which previous research has not always paid enough attention, e.g. Ory, et al., 1999) and to test for the effect of patient dementia status on caregiver well-being under these extremely well defined conditions. By reducing the possibilities for misclassification, we increased the probability of observing differences between dementia and non dementia caregivers, if there are any. However, this means that a range restriction phenomenon with respect to patient cognitive abilities was at work in our study, and this also weakens the generalizability of our findings. Thus, even if we provided strong evidence that caring for someone with dementia is more troublesome than caring for someone with other debilitating and chronic conditions but mentally lucid, our results may not be generalized and taken as conclusive.
Further research in this area is therefore needed. In particular, we suggest building upon the present study and possibly following dementia and non dementia dyads longitudinally, since this study — as most previous research — has a cross sectional design that does not allow for causality to be judged. Moreover, the variables and constructs under investigation are dynamic in nature. By using repeated-measure designs, indicators of dementia caregivers’ well-being could be monitored over time, and their change observed as patients cognitively deteriorate. The recorded trends could then be compared with that showed by non dementia caregivers, thus allowing for invaluable information on similarities and differences between the two types of caregiving experiences to be gained.
In this study we also sought evidence for a second hypothesis, namely that spouses of care recipients would report the worst consequences from caregiving. The results provided support for this hypothesis, thus replicating previous research in this area. Independently of care recipients’ dementia status, spouses showed higher levels of objective and subjective burden, stress, anxiety and depression than other relatives. While in most cases spouses were not found to be significantly more compromised than sons/daughters, the results did show that spouses were significantly more depressed than all other relatives. This finding brings further evidence for the particularly critical position of this group of caregivers and should also cause great concern, given that the emotional strain experienced by spouse caregivers has been found to be an independent risk factor for mortality (Christakis and Allison, 2006; Schulz and Beach, 1999).
Though the results of this study may not be considered conclusive, they do suggest that dementia caregivers have a greater need for support from formal services. In the case of spouses, this need for help and support must be considered a priority. One possible approach to help family caregivers is adult day care, which provides a number of out of home services for older persons suffering from a variety of illnesses, including dementia. Adult day care allows caregivers to leave their role for a certain number of hours during the day or the week, so that they can take time for other activities and possibly restore their social and psychological resources, thus improving their stress and depression levels even after short periods of time (Zarit, et al., 1998). Recent research findings show however that the use of this service is associated to a higher risk of future institutionalisation (McCann, et al., 2005), especially when caregivers wait too long to begin using it (Gaugler and Zarit, 2001; Gaugler, et al., 2003), thus reducing the potential advantages deriving from appropriate training interventions (Coon et al., 2003; Gelmini, et al., 2001; Teri, et al., 2005).

5. Conclusions

While previous research’s findings remained inconsistent regarding the negative consequences suffered by carers of persons affected by dementia, the present study, by comparing two highly matched samples of caregivers and by taking into account several characteristics of the cared-for relative, provides strong evidence that dementia caregivers are more adversely affected by their role than their non dementia counterparts. In particular, this study showed that dementia caregivers reported higher levels of stress and a more depressed mood. However, more research is needed, especially of a longitudinal type and on larger samples of caregivers, to replicate the present findings, thus further strengthening their generalisability.

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