PSYCHOGERIATRICS 2015; 15: 20–25
Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia Hui-Mei CHEN,1,2 Mei-Feng HUANG,2,3,4 Yi-Chun YEH,2,3,4 Wen-Hui HUANG5 and Cheng-Sheng CHEN3,4
Department of Occupational Therapy, College of Health Science, 2Graduate Institute of Medicine, College of Medicine, 3Department of Psychiatry, Faculty of Medicine, College of Medicine, 4 Department of Psychiatry, and 5Department of Nursing, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan Correspondence: Prof Cheng-Sheng Chen MD, PhD, 100, Tzyou 1 Road, Kaohsiung 807, Taiwan. Email: [email protected]
Received 14 April 2014; revision received 16 June 2014; accepted 18 August 2014.
Key words: caregiver burden, coping strategies, dementia, problem-focused coping, social support.
Abstract Background: Coping strategies are a potential way to improve interventions designed to manage the caregiver burden of dementia. The purpose of this study was to develop an intervention targeted towards improving coping strategies and to examine its effectiveness on reducing caregiver burden. Methods: A controlled study design was used. Fifty-seven caregivers of dementia patients were enrolled. Coping strategies were assessed with the Revised Ways of Coping Checklist (WCCL-R) and caregiver burden was assessed with the Chinese version of the Caregiver Burden Inventory. The participants were randomly divided into two groups. The intervention group was offered a series of five interventions in which problem-solving skills, knowledge of dementia, social resources, and emotional support were taught every 2 weeks, and the control group was telephoned every 2 weeks for the usual clinical management. Two weeks after the end of the intervention, we again administered the WCCL-R and the Caregiver Burden Inventory. Two-way repeated-measure ANOVA was used to evaluate the changes in coping strategies and caregiver burden. Results: Forty-six participants completed the study. No statistically significant differences were noted in the demographic data between the two groups. On the problem-focused coping subscale on the WCCL-R, the intervention group’s mean score increased by 3.8 points, and the control group’s decreased by 5.1 points (F = 7.988, P = 0.007). On the seeking social support coping subscale on the WCCL-R, the intervention group’s mean score increased by 3.8 points, and the control group’s decreased by 3.1 points (F = 4.462, P = 0.04). On the Caregiver Burden Inventory, the intervention group’s mean score decreased by 7.2 points, and the control group’s increased by 2.2 points (F = 6.155, P = 0.017). Conclusions: Psychosocial intervention can help caregivers to adopt more problem-focused and social support coping strategies, which are beneficial in terms of reducing the caregiver burden.
INTRODUCTION Dementia is the leading cause of disability among older people worldwide and is the main cause of dependency and caregiver burden and stress.1,2 In 2012, the World Health Organization published a report indicating that dementia is a public health priority. One of the key messages emphasized that dementia is overwhelming for caregivers and that adequate support is required for them.3 20
Caregiving is one common model for studying the stress process, particularly the general relationships of stressors to significant burdens in the well-being and quality of life of caregivers.4,5 The concept of burden in the caregiver situation may contain many dimensions contributing to a caregiver’s feeling of distress, including inability to cope.6,7 Coping is the process of adaptation to a stressful situation.8 How caregivers subjectively evaluate their circumstances © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Intervention for dementia caregivers
influences the decisions they make about providing care, seeking assistance, and continuing in the caregiving role.9 Caregivers would be better equipped if they had more effective ways of coping with stress, and effective coping strategies can manage caregivers’ roles in terms of minimizing the effects on their mood and general well-being.4,10 Health-care professionals can help caregivers enhance their coping skills, support existing skills, and facilitate the development of new ones. Coping methods can be classified into two broad patterns: positive coping and negative coping. Generally, positive coping strategies involve the individual making an active effort to manage stressors, and individuals can engage in active efforts to control or change stressful circumstances and to manage emotional responses to the stressor. In contrast, negative coping strategies are likely to disengage the individual from the caregiving circumstances. Individualized interventions for reducing caregiver distress have positive results.11,12 These kinds of interventions can be tailored to caregivers’ cultural and educational background, current knowledge and skills, mental health status, physical health status, and personality.12 Therefore, intervention can be easily adapted to the specific needs of individual caregivers and may be effective in terms of modifying burden or distress for caregivers in general. Studies have found that caregivers’ coping behaviours are strongly associated with psychological reaction. Our previous study found that high levels of caregiver burden were associated with the use of emotion-focused coping strategies. Further development of interventions focused on caregivers’ coping strategies may be beneficial in reducing caregiver burden.13 Therefore, coping is an important target for clinical intervention. The aim of this study was to develop an intervention programme for coping strategies and investigate whether the intervention programme is able to improve coping strategies and subsequently reduce caregiver burden.
METHODS The study was designed as a randomized controlled trial to evaluate the effectiveness of coping strategy intervention for dementia caregivers. In the randomized controlled trial, there were two parallel groups: the experimental group, in which caregivers took part © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
in the intervention to improve their copy strategy, and the control group, in which caregivers received the usual clinical care. Participants The participants in this study were individuals who were the main caregiver for a family member with dementia living at home. They were recruited from the patients of a university-affiliated outpatient memory disorders clinic. Participants were eligible for inclusion if they me the following criteria: (i) were aged at least 18 years; (ii) lived with a family member who had been diagnosed with dementia; and (iii) provided care for the patient for at least one-third of their time at home during the past month. Further inclusion criteria related to the dementia patients: they had to be aged 65 years and older, with no uncontrolled or terminal medical condition. Caregivers were excluded from the study if they had a mental illness and/or cognitive impairment. Written informed consent was obtained from caregivers prior to baseline interviews using forms approved by the institutional review board. Following baseline interviews, family caregivers were randomized into the experimental group or control group. Block randomization with equal sizes was used as the method of randomization. The allocation schedule was created by an independent researcher using a computerized random number generator and was unknown to the investigators of this study. Intervention protocol Study nurses who had completed an intervention training programme formed the research team that provided intervention in this trial. Before allocation and intervention, study participants were administered questionnaires to assess their pre-existing coping strategies and caregiver burden. Caregivers were visited every other week either at the clinic or at home. The intervention was composed of six sessions, completed over 3 months. The first session was intended to improve the knowledge of dementia, such as its symptoms and treatment plan. The aim was to reframe the caregivers’ potential misunderstanding or misinterpretation of general awareness of dementia. The second session presented information regarding available support resources, such as respite care, housework services, social welfare benefits, and a supporting organization, the Taiwan Association of 21
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Family Caregivers, and aimed to organize support from social resources. The third and fourth sessions discussed how to improve techniques to manage disruptive behaviours or cognitive difficulty that caused caregivers the most distress. The fifth session taught skills to help caregivers to take better care of themselves, such as relaxation techniques, emotional support, or individual coaching. The final session established a caregiver self-support system to enable access to immediate assistance for problem solving. The intervention aimed to help caregivers develop problem-solving skills, manage their own emotions, and increase their knowledge of dementia and caregiver-support strategies. Instruments The instruments used in this study were the Revised Memory and Behaviour Problems Checklist,14 the Chinese version of the Caregiver Burden Inventory (CBI),15,16 and the Revised Ways of Coping Checklist (WCCL-R).17 The Revised Memory and Behaviour Problems Checklist is a 24-item, caregiver-reported measure of the severity of behaviour problems in patients with dementia and how bothersome or upsetting the behaviour is to the caregiver. It examines three domains of problems related to dementia (memory-related issues, depression, and disruptive behaviours) and gives parallel scores for caregiver reaction. Frequency and caregiver (emotional) reaction were rated using a Likert scale with a range of 0 to 4. For frequency, the scale ranged from no occurrences to daily occurrences, and for the effect of behaviours on caregivers, the scale ranged no effect to extremely bothersome. The product of severity and reaction was calculated for each item. The WCCL-R is a 42-item, caregiver-reported measure that assesses both positive and negative methods of coping with stressful situations, including problem-focused (15 items), seeking social support (6 items), blaming self (3 items), wishful thinking (8 items), and avoidance (10 items). Each item is scored on a 5-point Likert scale ranging from 0 (never) to 4 (all the time). A higher score indicates greater use of a given coping strategy. The CBI is a 24-item, caregiver-reported measure of burden. Responses are rated on a self-reported 5-point Likert scale. Subjects are asked to rate each item on a 5-point scale ranging from 0 (not at all disruptive) to 4 (very disruptive), with higher scores 22
indicating a greater burden. The CBI has five domains: time-dependence burden, developmental burden, physical burden, social burden, and emotional burden. The data collected were initially analyzed by descriptive statistics, with continuous variables expressed as mean 1 SD and categorical variables as percentages. Student’s t-tests or χ2 analyses were conducted to compare the demographic data and work history between the two groups. Two-way ANOVA were conducted on the means of the WCCL-R and CBI to compare the changes from baseline to the end of the study in the two groups. All statistical tests were two-tailed. The alpha criterion for significance was 0.05 or less.
RESULTS Forty-six caregivers participated in this study. The mean age was 54.9 1 13.2 years, and the mean educational level was 9.2 1 4.6 years. Women accounted for 67.4% (n = 31) in this cohort. Among them, 15 (32.6%) were the spouse of a patient and 31 (67.4%) were an adult child of a patient. The types of dementia included 30 (66.7%) with Alzheimer’s disease, 15 (32.6%) with vascular dementia, and 1 (0.7%) with another type of dementia. Nearly two-thirds of the patients had a mild form of dementia (66.7%) based on their Clinical Dementia Rating score of 1, and the rest were of a moderate severity. The medications used by dementia patients, including anti-dementia, antipsychotics, and antidepressants, did not differ between the two groups. The caregivers in both groups had similar demographic and relationship characteristics at baseline, as shown in Table 1. Comparison of patients’ symptom severity as measured by the Revised Memory and Behaviour Problems Checklist did not show any statistical difference between the two groups. Two-way repeated measured ANOVA were conducted to examine whether the intervention effect on coping strategies differed between the groups (Table 2). The results revealed that there were significant interactions between intervention and group in terms of the total score on the CBI (P = 0.017). The intervention group’s mean CBI score decreased from 46.8 1 16.6 at entry to 39.6 1 13.1 at the end of intervention, while that for the control group increased from 39.2 1 17.6 to 41.4 1 16.3. For the WCCL-R subscales, the problem-focused and seeking social © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Intervention for dementia caregivers Table 1 Sociodemographic and clinical data of caregivers of dementia patients in the two groups Characteristic Study participants Sex (female) (n) Age, mean 1 SD (years) Education, mean ± SD (years) Relationship (n) Spouse Adult children Care receipt Sex (female) (n) Age, mean ± SD (years) Type of dementia (n) Alzheimer’s Vascular Others CDR (n) 1 2 Medications (n) Anti-dementia Antipsychotics Antidepressants Illness duration, mean ± SD Revised Memory and Behaviour Problems Checklist, mean ± SD
Intervention group (n = 24)
Control group (n = 22)
15 (62.5%) 54.8 ± 15.1 10.2 ± 4.0
16 (72.7%) 55.1 ± 11.1 8.2 ± 5.1
χ2 = 0.546 t = 0.098 t = 1.504
0.460 0.922 0.140
6 (25%) 18 (75%)
9 (41%) 13 (59%)
χ2 = 1.322
13 (54.2%) 77.0 ± 9.0
9 (40.9%) 75.9 ± 8.5
χ2 = 0.809 t = 0.45
15 (63%) 8 (33%) 1 (4%)
15 (68%) 7 (32%) 0
χ2 = 0.982
χ2 = 0.163
15 (63%) 9 (37%)
15 (68%) 7 (32%) χ2 = 1.344 χ2 = 0.262 χ2 = 0.759 t = 0.31 t = 1.709
0.246 0.609 0.384 0.756 0.095
9 (37.5%) 19 (79.2%) 4 (16.7%) 3.8 ± 2.3 118.9 ± 77.6
12 (54.5%) 16 (72.7%) 6 (27.3%) 3.5 ± 2.2 85.4 ± 54.0
CDR, Clinical Dementia Rating.
Table 2 The changes in RMBPC scores, coping strategies and burden after intervention in the two groups Intervention group
CBI WCCL-R Problem solving Seeking social support Blame self Wishful Avoidance
Group × intervention P value
46.8 ± 16.6
39.6 ± 13.1
39.2 ± 17.6
41.4 ± 16.3
34.8 ± 11.7 12.3 ± 6.3 3.5 ± 2.2 13.4 ± 7.6 12.9 ± 7.4
38.5 ± 12.2 12.7 ± 4.4 2.9 ± 1.9 12.7 ± 5.9 10.8 ± 5.3
37.4 ± 10.9 14.1 ± 5.8 3.3 ± 1.9 16.1 ± 6.8 10.9 ± 6.6
32.3 ± 10.9 11.0 ± 4.8 2.7 ± 1.7 12.0 ± 6.2 9.8 ± 5.4