Author: Kor, Pui Kin
Title: Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: a randomized controlled trial
Advisors: Liu, Justina (SN)
Chien, Wai Tong (SN)
Lai, Claudia (SN)
Degree: Ph.D.
Year: 2020
Award: FHSS Faculty Distinguished Thesis Award (2019/20)
Subject: Caregivers -- Psychology
Caregivers -- Mental health
Dementia -- Patients -- Care
Hong Kong Polytechnic University -- Dissertations
Department: School of Nursing
Pages: xxvi, 313, [47] pages : color illustrations
Language: English
Abstract: Background: Dementia is a common neurodegenerative disease in older people that causes gradual cognitive decline and leads to a series of behavioural and psychological symptoms of dementia (BPSD). As the disease progresses, the self-care ability of people with dementia (PWD) will gradually be lost. Family caregivers need to take on a wide range of caregiving tasks, including providing assistance in daily activities and managing illness-related behavioural problems, such as wandering and agitation. The demanding caregiving tasks and uncertainty about the progression of the disease usually lead to high levels of stress and different psychological comorbidities such as depression and anxiety, consequently resulting in the premature institutionalization of the PWD. However, effective psychosocial interventions for the family caregivers of PWD are still lacking. Mindfulness-based cognitive therapy (MBCT) is an intervention that was primarily designed for people with recurrent depression. It is now broadly used to reduce stress and emotional problems in different populations. In MBCT, techniques from cognitive behavioural therapy are used to promote greater awareness in the participants about their depressive thinking patterns, and mindfulness practices are used to help them to disengage from this negative thinking. The preliminary and immediate effects of MBCT on stress reduction in caregivers of PWD were demonstrated in our systematic review with meta-analysis (Chapter 3). However, several limitations (e.g., a poor study design, a small sample size, and unclear sustainable effects) were found. Also, the demanding face-to-face mindfulness sessions resulted in a high attrition rate in previous studies, indicating a need to modify the MBCT protocol for caregivers of PWD. Based on the feedback from the caregivers in our feasibility study (Chapter 4), we made the following changes to the MBCT protocol by 1) integrating the content of some sessions to shorten the face-to-face training, 2) providing telephone follow-ups to monitor their progress and adherence to the practice of mindfulness and; 3) extending the last 3 sessions from weekly to bi-weekly to help the participants develop a habit of practising mindfulness on a daily basis. To explore the feasibility and preliminary effects of the modified MBCT for the family caregivers of PWD, a pilot study with 36 caregivers of PWD was conducted between 2017 and 2018 (Chapter 6). The results showed that the modified MBCT is a feasible and acceptable psychosocial care programme for Chinese family caregivers of PWD. Some potential effects on the caregivers and care recipients (e.g., improvements in behavioural problems) were also found. Objective: This study aimed to investigate the effectiveness of a modified MBCT programme for reducing stress in the family caregivers of PWD over a 6-month follow-up period. It was hypothesized that the participants in the intervention group would exhibit greater improvement than the control group immediately after the intervention (T1) and at the 6-month follow-up (T2) in terms of the below hypotheses: 1. a significantly greater reduction in stress (primary outcome) at T1 and T2; 2. significantly greater improvement in the secondary outcomes, namely depression, anxiety, resilience, burden, and health-related quality of life at T1 and T2; 3. significantly greater improvement in the behavioural and psychological symptoms of dementia (BPSD) in the care recipient and the related caregivers' distress at T1 and T2. In addition, the following three hypotheses were put forward to explain the positive changes in the intervention group: 1. There would be significant positive correlations between the caregivers' levels of mindfulness (total score of five facets of mindfulness measured by FFMQ) and their improvement in all psychological outcomes. 2. There would be significant positive correlations between one or more facets of mindfulness and their improvement in all psychological outcomes 3. There would be significant positive correlations between the caregivers' duration of mindfulness and their level of mindfulness. Methods: In a single-blinded, parallel-group, randomized controlled trial (RCT), 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session MBCT programme in 10 weeks; or the control group, receiving the usual family care and a brief education on dementia care. The brief education sessions were similar in frequency and duration to those received by the intervention group. Various psychological outcomes of caregivers including stress (primary outcome) depression, anxiety, resilience burden, distress, health-related quality of life, and the BPSD in the care recipient were assessed and compared at baseline, T1, and T2. A focus group with nineteen participants from the intervention group with different levels of stress reduction was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention acceptability was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 8.9%. In the GEE analysis, the interaction effect between groups (modified MBCT vs control) and time points (T0, T1, T2) on was statistically significant in the caregivers' stress (Wald X2 = 6.20, p = 0.045), depression, (Wald X2 = 11.82, p = 0.003), anxiety (Wald X2 = 7.76, p = 0.02), mental health related QoL (Wald X2 = 11.44, p = 0.003) and BPSD related distress (Wald X2 = 8.82, p = 0.012). However, no statistically significant interaction effect between groups and time points was found on caregivers' burden (Wald X2 = 1.43, p = 0.45), resilience (Wald X2 = 3.57, p = 0.17), physical health-related (Wald X2 = 3.55, p = 0.17), and the BPSD of the care recipients (Wald X2 = 11.03, p = 0.09). Post-hoc pairwise comparisons showed that the modified MBCT had a statistically greater improvement in their level of stress (p < 0.01, Cohen's d = 0.7), depression (p < 0.01, Cohen's d = 1.4), anxiety (p < 0.01, Cohen's d = 1.0), mental health-related quality of life (p = 0.009, Cohen's d = 0.6), and caregivers' distress (p < 0.01, Cohen's d = 0.8) between baseline (T0) and the 6-month follow-up (T2), compared with the control group. Significantly greater improvements were also found in the intervention group's level of stress (p < 0.001, Cohen's d = 0.4), burden (p < 0.001, Cohen's d = 0.7), depression (p < 0.001, Cohen's d = 0.4), and anxiety (p = 0.003, Cohen's d = 0.4) between baseline (T0) and the post-test (T1), compared with the control group. In addition, a significant improvement was also demonstrated in the BPSD of the care recipients in the intervention group ( p < 0.01, Cohen's d = 0.3) between T1 (post-test) and T2 (6-month follow-up). However, no significant improvement was found in their level of resilience and physical health-related quality of life. With the exception of burden and BPSD-related caregivers' distress, statistically significant correlations (rs = -0.66 to 0.59) were found at T1 between the caregivers' levels of mindfulness (measured by FFMQ) and stress, depression, resilience, anxiety, mental health QoL, physical health-related QoL, and severity of the BPSD in the care recipients. On the other hand, statistically significant correlations (rs = -0.31 to 0.35) were found at T2 between the caregivers' levels of mindfulness (measured by FFMQ) and stress, burden, depression, physical health-related QoL, and mental health QoL (MCS). The 'non-judging of inner experience', 'non-reactivity to inner experience', and 'acting with awareness' were the three out of five facets of mindfulness that were significantly correlated with improvement in most of the psychological outcomes. Over 60% of the caregivers were able to practise mindfulness for 180 minutes or more every week after the class, and significant correlations between the caregivers' levels of mindfulness and their duration of practice were found at both T1 and T2. Focus groups were conducted immediately after the intervention, in which the caregivers perceived the positive effect on their emotions, physical health, and cognitive skills (e.g., increased patience, concentration, and acceptance). Another strength of the modified MBCT reported by the caregivers was the additional effects on dementia caregiving, which were an improvement in the behavioural problems of the PWD and the dyadic relationship. To successfully adopt mindfulness-based practices and maximize their beneficial effects, it was suggested that the caregivers cultivate the habit of regular practice and incorporate the mindfulness practices into their daily life. However, some personal factors (e.g., time constraints) and environmental factors (e.g., disturbances by the PWD or family members) were found to be barriers to the practice of mindfulness by the caregivers. Moreover, some caregivers pointed out that the modified MBCT could not help to relieve the stress resulting from their lack of knowledge in caregiving. Thus, it is suggested that some modifications (e.g., the inclusion of instruction in some basic caregiving skills) be made to the programme. Significance: This is the first RCT to examine the effects of a modified MBCT for the family caregivers of PWD, which addressed a locally and internationally important issue in supporting family caregivers in the community. The modified MBCT protocol addressed the needs of caregivers and the limitations of previous studies, resulting in a high attendance rate and completion rate. The results confirmed that the modified MBCT could significantly reduce the stress of caregivers and promote their psychological well-being. Transferring this evidence-based intervention into practice in the community could reduce their stress levels and psychological comorbidities, making it possible for them to provide daily care to the PWD for a longer period of time, thus preventing premature institutionalization. To implement the findings into practice in the community, it is suggested that the modified MBCT be provided in district elderly centres as a regular service to support caregivers. This study also provided information about the patterns of mindfulness practised by the caregivers (i.e., their duration of practice), which could inform us of the optimal dosage of the modified MBCT. Understanding the patterns and habits of caregivers in practising mindfulness could facilitate the development of different mindfulness-based interventions for family caregivers in future research. Lastly, this study provided the qualitative data to allow us to get a better understanding of the caregivers' perceptions and feelings about practising mindfulness and the impacts on the dyadic relationship. This information provides the groundwork for a further study to investigate the effect of the modified MBCT on the relationship between the family caregivers and the care recipients and how it is associated with the experience of caregiving.
Rights: All rights reserved
Access: open access

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