Behavioural problems in dementia : caregiver issues

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Introduction This thesis deals with the behavioural and psychological changes in dementia in relation to caregiver functioning. Behavioural and psychological problems occur frequently during all stages of the dementia process, and include a heterogeneous range of behaviours, such as depression, apathy, agitation, aggression, psychosis, hallucinations, and restlessness. The majority of the dementia patients are cared for at home by a family member, mostly spouses or children. Caring for a demented person with problem behaviours is very demanding for family caregivers and has profound consequences. Furthermore, caregivers differ in their competence to adequately manage patient problems, and may even worsen problem behaviours. The topic of this thesis is the two-way interaction between patient behaviour and caregiver functioning, of which both sides are dealt with separately. Thus the two main questions addressed in this thesis are: 1. What is the impact of behavioural problems in dementia patients on the family caregiver? 2. What is the impact of family caregivers on patient problem behaviours in dementia? To examine the interaction between patient behaviour and caregiver functioning, we performed a longitudinal study into the course and risk factors of behavioural problems in dementia, entitled the Maastricht Study of Behaviour in Dementia (MAASBED). A description of MAASBED is provided in chapter 2 of this thesis. In chapter 3 we tried to identify distinct behavioural syndromes, using the NeuroPsychiatric Inventory (NPI). The three subsyndromes that were found (hyperactivity, mood/apathy, and psychosis) formed the basis of further analyses described in this thesis. The impact of patient behaviour on caregiver functioning The first aim of this study was to assess the negative impact of patient behavioural problems on various aspects of caregiver functioning, as addressed in chapter 4, 5, 6, and 7. Results show that patient behavioural problems are the most distressing to caregivers, as indicated by subjective as well as objective measures. Furthermore, caregiver distress appeared to have profound consequences, as it increased the risk of patient institutionalization. In addition, it was found in chapter 4 that high levels of patient behavioural problems led to a higher caregiver cortisol awakening response, an objective indicator of stress (Pruessner et al. 1997), mediated through stress appraisal. The observed elevation of 165 cortisol levels is an important finding, because it could increase caregivers’ susceptibility to physical health problems, as chronic exposure to stress hormones increases disease vulnerability (Bauer et al. 2000). These findings provide evidence for a physiological stress response in caregivers, in addition to subjective measures. A further examination described in chapter 5 and 6 indicated that specific symptoms have specific effects on family caregivers, with patient apathy being one of the most important symptoms in this regard. Caregivers of Alzheimer’s Disease (AD) patients as well as caregivers of Frontotemporal Dementia (FTD) patients reported that patient symptoms of depression and apathy were most distressing to them (chapter 6). In addition, disinhibition was severely distressing in FTD caregivers, whereas anxiety was typically distressing in AD caregivers. FTD caregivers were overall more distressed by the behaviour of their partner than AD caregivers. Thus, individual behavioural symptoms in dementia patients have a differential impact on their caregivers, with mood disturbance and apathy having overall the greatest impact. But, besides these similarities also differences exist between specific diagnostic groups, with behaviour related distress being most prominent in FTD caregivers. Furthermore, patient apathy was the most important symptom that adversely affected the quality of the spousal relationship, by causing a loss of essential relationship elements, such as joint activities, shared experiences, and verbal communication. Results indicated that caregivers better cope with excessive patient behaviour that disrupts interaction, than they are with a decrease in interaction because of diminished conversation or disinterest on the part of the patient. High levels of caregiver distress appeared to have profound consequences for patient and caregiver. The study described in chapter 7 showed that caregiver distress related to patient behaviour was a significant predictor of nursing home placement, while patient behaviour in itself was not. These results stress the importance of distinguishing objective burden (in terms of behavioural problems) from the resulting subjective distress in the caregiver, when estimating the risk for institutionalization. In addition, kinship has to be taken into account in this regard, because daughters institutionalized the patient sooner than spousal caregivers. The impact of caregiver factors on patient behaviour Besides the finding that patient behaviour has profound consequences for family caregivers, they are, vice verse, likely to play a role in the emergence of patient behavioural problems. The impact of several aspects of caregiver functioning on patient behaviour was addressed in the second part of this thesis (chapter 8, 9, 10, and 11). Results from these studies suggest that caregiver competencies and abilities to provide adequate care may affect hyperactive behaviour in the patient. No evidence was found that patient mood/apathy or psychosis was influenced by caregiver functioning. First, differences in caregiver management styles were examined in chapter 8, which resulted in the identification of the following three strategies, on the basis of analysis of verbatim reports of in-depth interviews in caregivers: (1) caregivers using a ‘nurturing’ strategy felt that they were taking care of a child, no longer regarded the patient as equal, and focused on personal care tasks or protection of the patient; (2) a ‘supporting’ strategy was characterized by adaptation to the patient’s level of functioning, supervising the patient, and stimulating his or her abilities; (3) and a ‘non-adapting’ strategy was characterized by a lack of understanding of the problems, and irritation or impatience towards the patient. We found that caregiver characteristics such as sex, education, and personality were important determinants of management strategies. Furthermore, possible consequences of these management styles were examined. We found that non-adapting caregivers were most likely to encounter patient hyperactivity symptoms during the course of the dementia and felt least competent compared to nurturers and supporters, whereas supporters reported the lowest levels of patient hyperactivity and felt most competent as a caregiver. These findings resulted in the identification of the most vulnerable patient-caregiver group, characterized by a non-adapting caregiver strategy, feelings of low caregiver competence, and high levels of patient hyperactivity. It is most likely that there exists a mutual negative interaction in these vulnerable couples, with both patient and caregiver reacting with irritation and anger towards each other, resulting in an exacerbation of patient hyperactivity. This is further supported by the finding in chapter 9 that highly critical/over-involved caregivers, as indicated by a measure of expressed emotion (EE), also reported higher levels of patient hyperactivity and lower feelings of competence. In addition, vulnerability may be increased by suboptimal cognitive functioning in caregivers. The continuously changing and demanding care situation requires optimal cognitive functioning in caregivers. Spousal caregivers of dementia patients are usual of the same age as the patient and therefore at risk for age-related cognitive decline (Jolles 1986), which may affect their ability to provide adequate care. Examination of caregiver cognitive functioning and possible consequences for patient behaviour in chapter 10 showed that suboptimal memory performance in caregivers was related to an increase in patient hyperactivity symptoms. This finding is in line with the results described in chapter 167 8 and 9, that caregiver functioning is associated with patient hyperactivity. The fact that suboptimal cognitive functioning predicted an increase in patient hyperactivity supports the notion that caregiver functioning plays a role in the etiology of patient behaviour. But again, considering the fact that there is a reciprocal interaction between patient and caregiver it seems most plausible that there exists a mutual relationship between patient problem behaviours and caregiver functioning. The results from the current study imply that caregivers with a non-adaptive strategy, high levels of expressed emotion, or sub-optimal cognitive functioning may not be able to counterbalance the lowered competence in the dementia patient, whereas supporting caregivers are most competent to adapt to the needs of the patient and create a safe environment. Further evidence for the impact of caregiver functioning on patient behaviour is provided by caregiver intervention studies. A review of caregiver intervention studies in chapter 11, including behavioural management training, psycho-education, and social support groups, suggested that patient problem behaviours can be improved by teaching caregivers adequate management skills. This underlines the importance of the MAASBED results, as the identification of vulnerable patient-caregiver couples can be used as a starting point for caregiver interventions to improve caregiver skills and subsequently reduce patient problem behaviour. Discussion and conclusion Methodology, findings and their relevance are discussed in chapter 12. Methodological issues included the sample selection, assessment of behavioural symptoms, loss to follow-up, causality, combination of qualitative and quantitative methods, and the confounding influence of medication use. Patient problem behaviours have negative consequences for caregiver functioning, with patient apathy being the most important symptom in this regard. Several explanations for the contribution of apathy to caregiver burden are discussed. The impact of apathy is an important finding, as clinical practice and intervention research have under-recognized the importance of apathy so far. Furthermore, the differential effects of specific patient behaviours stress the importance of focusing beyond BPSD on individual symptoms or syndromes. As caregiver functioning is, vice verse, likely to play a role in the emergence of patient behavioural problems, the importance of an interactive model of patient problem behaviours was set forth. Vulnerable patient-caregiver systems were found, characterized by suboptimal caregiver functioning, diminished feelings of caregiver competence, poor interpersonal interaction, and higher levels of patient hyperactivity. The identification of vulnerable client systems may provide a useful starting point for the development of more specific interventions. Overall, these findings illustrate that behavioural changes are a prominent aspect of dementia, and therefore should be considered as an intrinsic part of the disease. A behavioural approach to dementia, with emphasis on an interactive model of patient behaviour, will provide most opportunities for successful interventions to increase the quality of life of both patient and caregiver.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Maastricht University
  • Verhey, Frans, Supervisor
  • Jolles, Jellemer, Supervisor
  • Stevens, F., Co-Supervisor, External person
Award date15 Sept 2004
Place of PublicationMaastricht
Print ISBNs9075579195
Publication statusPublished - 1 Jan 2004

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