Caring For a Relative With Dementia: Family Caregiver Burden

Introduction

The article was written by Papastavrou, Kalokerinou, Papacostas, Tsangari, and Sourtzi, and was published in 2007. It was about their study of various dimensions related to burden and stress experienced by families providing care to dementia patients.

Description of the study

The study aimed to investigate the burden and stress of the caregivers when providing care to a dementia patient. It analyzed the impact of caregiving on the mental status of the primary caregiver, and various coping strategies that caregivers employ to overcome stressors. The objectives were to find the relationship between caregiver burden and patient’s behavior, possible reasons behind caregiver’s depression, and the effects of coping strategies. Nevertheless, the study also tried to correlate changes in the burden of the caregiver with the institutionalization of the patient. They attempted to use the study results to advise on nurses’ perception of the needs of dementia patients and their caregivers.

The basic concept was that the intensity of demands of providing care to a relative with dementia influences the burden of the caregiver. Caregivers need to constantly review and alter their strategies in meeting the changing needs. According to Given et al., the inability of the caregiver to adjust to the changing demands of providing care results in burden and consequent depression (as cited in Papastavrou et al., 2007, p.447). Caregiving stress has many factors like the relationship of the caregiver to the patient, the severity of the patient’s behavioral problems, support availability to the caregiver, and the caregiver’s adoption of various strategies, among others.

Although it has been considered for a long time that caregivers experience the burden of providing care to a relative with dementia, the study focused on analyzing many variables about the patient and the caregiver. For example, while it is true that the patient’s health and behavioral conditions create a strong impact on the caregiver, the main aspect of the patient’s behavior that would have a profound influence on the caregiver should be identified. Also, they studied changes in burden severity with gender, level of education, and financial position of caregiver.

It was a cross-sectional study involving 172 patient –primary caregiver dyads. All the participants were recruited from neurology clinics in Cyprus. Only those people were considered as primary caregivers who were holding the greatest responsibility of the patient in their families. Women caregivers accounted for more than 75 percent (132) of the sample. The data for the research was collected through interviewing, using four instruments. All ethical considerations were strictly followed including informed consent.

They used different scales and types of questionnaires for obtaining the required information. Memory and Behavioral Problem Checklist (MBPC) was used to find out the behavioral status of the patient and patient situations that bothered caregivers. Burden Interview (BI) was used to assess the stress experienced by primary caregivers. They analyzed factors such as personal strain, role strain, relational deprivation, and management of care. The caregiver’s level of depression was measured with the help of the Center for Epidemiological Studies – Depression Scale (CES-D). All the questions related to patients’ and caregivers’ conditions were mostly limited to the last one-week period from the interview day, to minimize bias due to the failure to memorize. Caregivers coping strategies were asked using The Greek translation containing 38 items.

The reliability of the study

The reliability in this study was measured using Cronbach’s alpha. It was high in the case of caregiver burden from patient’s conditions (0.93), followed by the frequency of problematic behaviors and caregiver’s reaction to them (0.85). The coping questionnaire had an alpha score of 0.73, whereas the Depression scale had 0.69. Data analysis was done using independent sample t-tests, correlation analysis, and one-way ANOVA followed by post hoc adjustments (Papastavrou et al., 2007, p. 449).

P-values were used in describing the results, as the lower the P-value the higher the probability of a statistically significant difference. They used Pearson correlation coefficients to draw relations between the study variables. It was found that caregiver burden had a positive correlation with the patient’s behavior and the caregiver’s response to it. Aggressive behavior had a stronger impact on caregiver burden. Coming to coping strategies, a positive approach (problem-solving), and seeking social support resulted in reduced burden levels. On the other hand, there was a positive correlation between burden and wishful thinking. The study showed significant gender differences in experiencing burden. Women caregivers seemed to suffer from relational deprivation and personal strain. Women caregivers mostly adopted emotional coping strategies, which further increased their burden levels than men who adopted problem-solving approaches.

It was also found that a low level of education and poor economic conditions had a worsening effect on caregiver’s stressful situations. Except for relational deprivation, burden levels did not show significant variations when the patient kept in a care setting was compared with a patient in the community. It seemed that the patient’s behavior, then health condition, had a greater impact on the caregiver’s burden.

Like any scientific study, it had certain unavoidable limitations. The results might be influenced by selection bias. Patients at different stages of the disease show varying behaviors that influence caregiver burden, and it, in turn, might affect the study result, as all the patients in the sample were not at a similar stage. Furthermore, there was no scope for verification of caregivers’ responses in the interviews. A stereotypical questionnaire did not allow respondents to express their feelings more clearly.

Conclusion

All in all, this study gives us valuable information regarding the psychological conditions of primary caregivers providing care to dementia patients.

Reference

Papastavrou, E., Kalokerinou, A., Papacostas S. S., Tsangari H., & Sourtzi, P. (2007). Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58 (5), 446-457.