Research in Gerontological Nursing

Empirical Research 

Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Zhaozhao Hui, MSN; Chen Yang, MSN; Diana Tze Fan Lee, PhD

Abstract

The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. [Research in Gerontological Nursing, 14(1), 43–52.]

Abstract

The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. [Research in Gerontological Nursing, 14(1), 43–52.]

The World Health Organization (2017) has estimated that approximately 50 million people worldwide are living with dementia. Previous studies have revealed that multiple impairments in people with dementia could trigger a long-term care transition (Afram et al., 2014; Toot et al., 2017). People with dementia appear to account for a notable proportion in long-term care facilities. The Alzheimer's Association (2020) has recently reported that 42% of residents in residential care facilities and 48% of nursing home residents have Alzheimer's or other dementias.

For family members, placing a relative with dementia into a long-term care facility may be described as a relief due to the shift of direct care responsibility to facility staff (Seiger Cronfalk et al., 2017). Yet, it does not represent the end of the caregiving process (Zarit & Whitlatch, 1993). Long-term care placement can introduce new stressors and challenges to family members. For example, family members generally transform their roles from providing direct daily care to visiting as advocates of their relatives after placement (Mullin et al., 2013). Different from in-home caregivers, family members of long-term care facility residents need to frequently interact with facility staff, which can expose family members to stressors of communication difficulties and even conflicts with facility staff (Givens et al., 2012; Konnert et al., 2017). Emotional distress, including feelings of failure, guilt, and grief, has been reported in family members after placement (Bramble et al., 2009; Sury et al., 2013). Schulz et al. (2004) even found that family members whose relative with dementia had been placed into long-term care facilities experienced levels of depression and anxiety as high as when they were in-home caregivers.

Family members have long been recognized as critical contributors to the well-being of people with dementia (McCallion et al., 1999). As reported, interventions for family members, such as teaching family members how to effectively communicate and interact with their relatives with dementia during visits, not only ameliorated family members' stress-related outcomes but also reduced their relatives' behavioral problems (McCallion et al., 1999). The philosophy of family-centered care emphasizes that family members are essential allies for quality and safety in health care provision. One of the key goals for health care is to promote family members' health and well-being and to maintain their control (Johnson & Abraham, 2012); that is, health care providers should also recognize and help address family members' stressors after long-term care placement. Despite the abundant knowledge of supportive interventions for family members of community-dwelling people with dementia (Boots et al., 2014; Gilhooly et al., 2016; Logsdon, 2008; Marim et al., 2013), only two systematic reviews focused on interventions that targeted family members whose relatives with dementia lived in long-term care facilities (Brooks et al., 2018; Muller et al., 2017). Of the two systematic reviews, one focused on the period of the transition from in-home to nursing home care (Muller et al., 2017); the other constrained the intervention type and only included psychosocial interventions (Brooks et al., 2018). Hitherto, no synthesized evidence was provided on interventions that assisted family members of people with dementia in long-term care facilities to cope with stressful situations or stressors after placement (i.e., the intervention effects were evaluated by stress-related outcomes). The current review aimed to: (a) identify and appraise existing evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations after placement; and (b) synthesize the effects of those interventions (conducting meta-analyses) on family members as well as residents with dementia.

Method

Design

The current systematic review was conducted based on the recommendations of the Cochrane Handbook for Systematic Reviews of Interventions (Higgins & Green, 2011). The protocol was registered on PROSPERO (CRD42019135065).

Inclusion and Exclusion Criteria

Study Types. Only randomized controlled trials (RCTs) published in English or Chinese were eligible for inclusion. Research protocols, reviews, non-randomized trials, case reports, conference abstracts, cross-sectional surveys, case-control studies, or cohort studies were excluded.

Types of Participants. Family members whose relatives with dementia had been placed into long-term care facilities were included.

Types of Interventions. Interventions were included if they targeted family members with an objective of assisting them to address stressful situations after placement, such as managing psychosocial distress or residents' problematic behaviors during visits. The following interventions, either alone or in combination, were included: psychosocial support, skills training, education, psychoeducation, stress management, or counseling.

Types of Comparators. Comparators included no intervention, usual care, or other interventions.

Types of Outcomes. For family members, any outcomes related to stress and/or coping were included, such as stress, caregiver burden, caregiver strain, psychological distress, caregiving hassles, depressive symptoms, anxiety, irascibility, role stress, or role entrapment (e.g., feeling of guilt, sense of loss) (Llanque et al., 2016), coping, and adaptation to the placement. For residents with dementia, outcomes related to behavioral and psychological symptoms of dementia (BPSD) were included.

Search Strategy

Eight databases (CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, WanFang Data, and China Journal Net) were searched from their inception until November 2019. The search terms included (dementia OR Alzheimer's disease) AND (residential care OR nursing home OR care home OR long-term care OR assisted living OR institutionalization OR institutional care) AND (family OR spouse OR child OR family caregiver OR informal caregiver) AND (randomized controlled trial OR random OR randomization). An additional manual search for the reference lists of relevant articles was also conducted.

Data Selection

Data selection was conducted by two reviewers independently. After removing duplications, titles and abstracts of the articles were screened to assess their relevance. If the title and abstract provided insufficient information, the full text was reviewed. Discrepancies between the two reviewers were resolved by discussion or consultation of a third reviewer. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart (Moher et al., 2009) depicts an overview of the data selection process from initial electronic database search to final included articles (Figure 1).

PRISMA flow diagram of the study selection process (Moher et al., 2009).

Figure 1:

PRISMA flow diagram of the study selection process (Moher et al., 2009).

Methodological Quality Appraisal

Methodological quality of the studies was appraised using the Cochrane Risk of Bias tool (Higgins et al., 2011). The following six domains were evaluated: (a) selection bias (random sequence generation and allocation concealment), (b) performance bias (blinding of participants and personnel), (c) detection bias (blinding of outcome assessment), (d) attrition bias (incomplete outcome data), (e) reporting bias (selective reporting), and (f) other bias. For cluster RCTs, particular biases such as loss of clusters and baseline imbalance were also considered. Each domain was judged as “low,” “high,” or “unclear” risk of bias by two reviewers independently. Discrepancies between the two reviewers were resolved by discussion or consultation of a third reviewer.

Data Extraction

Data were extracted by one reviewer and double-checked by a second reviewer referring to the Cochrane data collection form for intervention reviews (The Cochrane Collaboration, 2014). The following information was extracted: publication (e.g., authors, year, country), study design, study settings, characteristics of participants (e.g., sample size, age), characteristics of intervention(s) (e.g., theoretical underpinnings, delivery methods, frequency, duration), comparator(s), outcome measures of interest (e.g., measurement instruments), main findings, and other relevant data. When there were three groups, namely that participants in the intervention group received a psychoeducational intervention, participants in the control group received no intervention, and participants in the comparison group received a program provided by an Alzheimer Society (Ducharme, Lévesque, et al., 2005; Ducharme, Lévesque, Lachance, et al., 2005), only data of the former two groups were extracted. Data were only extracted for these two groups because the differences between the psychoeducational intervention and the program of the Alzheimer Society were not reported.

Data Synthesis

Meta-analyses were performed to estimate the overall intervention effects on family members' depressive symptoms using Review Manager version 5.3. Heterogeneity was estimated using Cochran's χ2 test for I2 statistics (Higgins & Thompson, 2002). Random effects model and inverse variance approach were used to calculate the pooled intervention effect. Mean difference and the 95% confidence interval (95% CI) were calculated due to the same measuring instrument. Other findings were reported using a narrative approach.

Findings

Search Results and Study Selection

In total, 1,293 articles (CENTRAL, n = 255; MEDLINE, n = 336; Embase, n = 275; CINAHL, n = 20; PsycINFO, n = 22; Web of Science, n = 129; WanFang Data, n = 241; China Journal Net, n = 15) were identified. After removing duplicates, 1,013 articles remained for selection. Screening of titles and abstracts resulted in exclusion of 996 articles. Seventeen full-text articles were assessed and 10 were excluded due to irrelevance of study settings, participants, and/or study design. Seven articles were then included. Of them, two articles (Ducharme, Lévesque, et al., 2005; Ducharme, Lévesque, Lachance, et al., 2005) were handled as one source due to the fact that they reported results of the same intervention at different time points. Thus, six studies were included in the final analysis.

Methodological Quality of the Included Studies

The risk of bias for each included study is summarized in Figure 2. Only one study (Gaugler et al., 2015) described the random sequence generation. All studies were rated as “unclear” risk of bias for allocation concealment because of insufficient reporting. Regarding blinding of participants and personnel, two studies were rated as “unclear” risk due to insufficient information provided (Davis et al., 2011; Gaugler et al., 2015), whereas the remaining four studies were rated as “high risk.” For detection bias, two studies provided insufficient information (Paun et al., 2015; Robison et al., 2007), three studies were rated as “low risk” (Davis et al., 2011; Ducharme, Lévesque, Lachance, et al., 2005; McCallion et al., 1999), and one study was rated as “high risk” (Gaugler et al., 2015). For attrition bias, one study (Paun et al., 2015) was rated to be at high risk due to considerably different dropout rates between the intervention and control group. Three studies were rated as “high risk” of bias for selective reporting as they did not report the pre-defined secondary outcomes (Davis et al., 2011), non-statistically significant outcomes (Ducharme, Lévesque, Lachance, et al., 2005), or detailed statistics (McCallion et al., 1999). For the three cluster RCTs (Ducharme, Lévesque, Lachance, et al., 2005; Paun et al., 2015; Robison et al., 2007), loss of clusters was not evaluated due to insufficient information provided. In the study of Robison et al. (2007), family members in the intervention group were slightly younger than those in the control group, and their relatives with dementia had lived in the facility for a shorter time. In the study of Paun et al. (2015), family caregivers in the intervention group scored significantly higher than their counterparts in the control group on two key components of grief at baseline (loss of relationship, p = 0.007; heartfelt sadness and longing, p = 0.017). Nevertheless, these baseline imbalances were controlled for in statistical analyses.

Risk of bias summary.Note. + = low risk of bias; – = high risk of bias; ? = unclear risk of bias.

Figure 2.

Risk of bias summary.

Note. + = low risk of bias; – = high risk of bias; ? = unclear risk of bias.

Characteristics of Included Studies

Characteristics of the included studies are shown in Table A (available in the online version of this article). Approximately all studies (n = 5) were conducted in the United States (Davis et al., 2011; Gaugler et al., 2015; McCallion et al., 1999; Paun et al., 2015; Robison et al., 2007). Three studies were individual RCTs (Davis et al., 2011; Gaugler et al., 2015; McCallion et al., 1999) and the other three were cluster RCTs with randomization at the facility level (Ducharme, Lévesque, et al., 2005; Paun et al., 2015; Robison et al., 2007). The sample size of participants ranged from 36 (Gaugler et al., 2015) to 388 (Robison et al., 2007), with a total of 705 participants. The mean age of family members varied from 51.5 (Ducharme, Lévesque, Lachance, et al., 2005) to 62.67 years (Gaugler et al., 2015). The majority of participants were female (74.6%). All studies reported residents' length of stay in the facilities, ranging from 5.5 weeks (Davis et al., 2011) to 40.6 months (Ducharme, Lévesque, Lachance, et al., 2005).

Characteristics of the included studiesCharacteristics of the included studiesCharacteristics of the included studiesCharacteristics of the included studies

Table A:

Characteristics of the included studies

Description of Interventions

The included interventions can be categorized as education/skill training (n = 3) (McCallion et al., 1999; Paun et al., 2015; Robison et al., 2007), psychoeducation (n = 1) (Ducharme, Lévesque, Lachance, et al., 2005), and psychosocial support (n = 2) (Davis et al., 2011; Gaugler et al., 2015). Two thirds of the interventions were group-based (n = 4) (Ducharme, Lévesque, Lachance, et al., 2005; McCallion et al., 1999; Paun et al., 2015; Robison et al., 2007).

Education/Skill Training. The Family Visit Education Programme (FVEP) (McCallion et al., 1999), Partners in Caregiving (PIC) intervention (Robison et al., 2007), and Chronic Grief Management Intervention (CGMI) (Paun et al., 2015) were categorized as education/skill training. The FVEP focused on family–resident communication during visits (McCallion et al., 1999), the PIC intervention focused on family–staff cooperation (Robison et al., 2007), and the CGMI focused on family members' chronic grief management (Paun et al., 2015).

Psychoeducation. The Taking Care of Myself intervention was a psychoeducational intervention, in which educational methods were combined with psychotherapeutic strategies. This intervention covered six themes: how to (a) feel at ease with a relative with dementia, (b) express point of view to health care staff, (c) avoid emotional torment, (d) deal with losses, (e) identify and call upon support network and community services, and (f) reorganize one's life after institutionalization (Ducharme, Lévesque, Lachance, et al., 2005).

Psychosocial Support. Two studies reported psychosocial support interventions, namely Residential Care Transition Module (RCTM) (Gaugler et al., 2015) and Family Intervention: Telephone Tracking-Nursing Home (FITT-NH) (Davis et al., 2011). The RCTM was a six-session multi-component intervention, consisting of psychoeducation, promotion of communication, problem solving, patient behavior management strategies, concrete goal planning, knowledge about treatments in residential care, as well as ad hoc counseling (Gaugler et al., 2015). The FITT-NH was a telephone-delivered intervention to provide family members with emotional support, direct them to appropriate resources, and teach them strategies to cope with ongoing problems after placement (Davis et al., 2011). Table B (available in the online version of this article) summarizes the intervention content of the included studies.

Intervention content of the included studies

Table B:

Intervention content of the included studies

Duration and Frequency of Interventions

Interventions in all studies were conducted by multiple sessions, with the exception of one study (Robison et al., 2007), which was delivered at one time and lasted for 6 to 7 hours. For the interventions that were delivered by multiple sessions, the total duration ranged from 6 weeks (McCallion et al., 1999) to 4 months (Gaugler et al., 2015). Three interventions were delivered on a weekly basis (Ducharme, Lévesque, Lachance, et al., 2005; McCallion et al., 1999; Paun et al., 2015), and one intervention (Davis et al., 2011) was conducted on a weekly basis during the first two months but biweekly in the third month. The amount of time of each session varied from 35 minutes (Davis et al., 2011) to 120 minutes (Gaugler et al., 2015).

Effectiveness of the Interventions

Stress-Related Outcomes. Depressive symptoms were the most frequently measured stress-related outcome (n = 4 studies) (Davis et al., 2011; Gaugler et al., 2015; Paun et al., 2015; Robison et al., 2007). Due to insufficient information provided, only three studies (Davis et al., 2011; Gaugler et al., 2015; Paun et al., 2015) were included in the meta-analysis; however, the results showed a non-significant overall effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% CI [−2.27, 5.04], p = 0.46) (Figure 3). Three studies (Davis et al., 2011; Gaugler et al., 2015; Robison et al., 2007) evaluated caregiver burden but none found significant reduction in the intervention group when compared with the control group. We were unable to conduct a meta-analysis on caregiver burden because of considerable heterogeneity (χ2 = 6.26, I2 = 84%, p = 0.01).

Meta-analysis for effects of the intervention on depressive symptoms.Note. IV = inverse variance; CI = confidence interval.

Figure 3.

Meta-analysis for effects of the intervention on depressive symptoms.

Note. IV = inverse variance; CI = confidence interval.

Stress appraisal was measured as an outcome of the psychoeducation intervention. Significant reduction was found at both post-intervention (four dimensions: perceived threat, p < 0.001; perceived challenge, p < 0.05; control by self, p < 0.01; informal/formal social support, p < 0.05) and 3-month follow up (one dimension: informal/formal social support, p < 0.001) (Ducharme, Lévesque, et al., 2005; Ducharme, Lévesque, Lachance, et al., 2005). Family members' perceived stress was evaluated in one psychosocial support intervention; however, no significant results were found (Gaugler et al., 2015).

Two studies measured feeling of guilt and both found a significant reduction in the intervention group when compared with the control group, either at post-intervention (p = 0.03) (Davis et al., 2011) or 6-month follow up (p = 0.029) (Paun et al., 2015). Two studies measured role overload (Ducharme, Lévesque, Lachance, et al., 2005; Gaugler et al., 2015). Of them, one study found a significant difference between the intervention group and control group at post-intervention (p < 0.05) (Ducharme, Lévesque, Lachance, et al., 2005); the other study found a delayed effect at 4 months after the intervention (p = 0.04) (Gaugler et al., 2015). Three studies measured hassles/conflict with facility staff. Results showed that family members who received the FITT-NH intervention reported significantly less hassles with facility staff (p = 0.02) (Davis et al., 2011), whereas no significant results were found in participants who received the PIC and CGMI (Paun et al., 2015; Robison et al., 2007). McCallion et al. (1999) measured family members' perception of caregiving hassles and showed significant benefits at 6-month follow up (p = 0.032). Moreover, Paun et al. (2015) measured sense of loss and role captivity but neither exhibited significant results.

In addition, psychological distress was measured as an outcome of the psychoeducation intervention (Ducharme, Lévesque, Lachance, et al., 2005). However, it failed to be significantly reduced at post-intervention or 3-month follow up (Ducharme, Lévesque, et al., 2005; Ducharme, Lévesque, Lachance, et al., 2005).

Coping-Related Outcomes. Two studies evaluated family members' coping-related outcomes. Of them, one study (Ducharme, Lévesque, Lachance, et al., 2005) measured family members' use of coping strategies, including problem solving, reframing, and stress symptom management. The other study (Gaugler et al., 2015) evaluated family members' adaptation to placement through measuring their satisfaction with facility staff, satisfaction with residential long-term care, and closeness of relationship with the relative. Results indicated that family members who received the psychoeducation intervention reported significantly improved use of the reframing coping strategy at post-intervention (p < 0.001) and 3-month follow up (p < 0.05) (Ducharme, Lévesque, Lachance, et al., 2005). However, neither immediate nor delayed effects were found after the RCTM psychosocial support intervention for improving family members' adaptation to placement (Gaugler et al., 2015).

Resident Outcomes. Two studies evaluated resident outcomes using BPSD. Both studies showed that interventions for family members were effective in reducing their relatives' problematic behaviors (McCallion et al., 1999; Robison et al., 2007).

Discussion

The current review was intended to identify, appraise, and synthesize the evidence regarding interventions that assisted family members to cope with stressful situations after placing a relative with dementia into a long-term care facility. As can be seen, it is a relatively understudied area of research as only six RCTs were eligible for inclusion even when we did not impose restrictions on intervention types in this review. In addition, all of the included studies were conducted in Western countries (the United States and Canada), which limited the generalizability of the results to other populations with different sociocultural backgrounds and/or health care systems.

Methodological Issues of the Included Studies

The assessment for methodological quality across studies indicated moderate to high risk of bias. One of the most predominant methodological limitations was lack of blinding of participants and personnel, potentially leading to a high risk of performance bias. Nevertheless, blinding of participants and personnel in some studies was inherently impractical due to the intervention nature. Allocation concealment was unclear in all studies and the use of random sequence generation methods was not reported in most studies (n = 5). These resulted in a high risk of selection bias. Moreover, lack of reporting of pre-defined secondary outcomes, non-statistically significant outcomes, or detailed statistical data led to a high risk of reporting bias in some studies (Davis et al., 2011; Ducharme, Lévesque, Lachance, et al., 2005; McCallion et al., 1999). Although an attention control group was set in one study (Ducharme, Lévesque, Lachance, et al., 2005), differences between the intervention group and attention control group were not reported. Future studies are recommended to report their intervention design and study results in a more standardized way.

Interventions of the Included Studies

Of the included studies, the intervention types, intervention contents, delivery methods, dose, and theoretical underpinnings were not exactly the same. Although the interventions in the included studies were categorized as education/skill training, psychoeducation, and psychosocial support, all included information provision to family members. All interventions involved promotion of communication, such as family–resident communication (McCallion et al., 1999; Paun et al., 2015), family–staff communication (Ducharme, Lévesque, Lachance, et al., 2005; Paun et al., 2015; Robison et al., 2007), and family communication (Davis et al., 2011; Gaugler et al., 2015; Paun et al., 2015). As previously reported, family members who provided caregiving for a relative with dementia are more likely to experience emotional distress (Prunty & Foli, 2019). Three included studies in the current review (Ducharme, Lévesque, Lachance, et al., 2005; Gaugler et al., 2015; Paun et al., 2015) covered assisting family members to manage emotional distress (e.g., grief, feeling of guilt, sense of loss). Moreover, cognitive appraisal of stress-ors was a determinant factor of stress perception (Folkman et al., 1986). Several studies also provide dementia-related knowledge (Paun et al., 2015; Robison et al., 2007), patient behavior management strategies (Gaugler et al., 2015; Robison et al., 2007), and information about the facility (Gaugler et al., 2015; Paun et al., 2015) to help family members better understand dementia caregiving and residential care.

Delivery methods and dose of the interventions varied. Specifically, four studies used group-based interventions (Ducharme, Lévesque, Lachance, et al., 2005; McCallion et al., 1999; Paun et al., 2015; Robison et al., 2007). One study used individualized interventions delivered purely by telephone contacts (Davis et al., 2011), and one study adopted multiple methods including online, in-person, email, and/or telephone (Gaugler et al., 2015). The duration of the interventions was also different, from several hours (Robison et al., 2007) to 4 months (Gaugler et al., 2015). With consideration of the limited numbers of studies included in this review, the optimal delivery methods and dose could not be determined and should be further explored.

Theoretical underpinnings of the interventions were not described in one half of the included studies (Gaugler et al., 2015; McCallion et al., 1999; Robison et al., 2007). It is increasingly recognized that interventions should draw on theories or conceptual models in their development and evaluation (Michie et al., 2008). Lack of theoretical underpinnings of the included studies may affect the validity of the study results. Theory-based interventions are thus warranted to help family members address stressful situations after long-term care placement of a relative with dementia.

Effectiveness of the Interventions

The included studies in the current review used various stress and coping outcomes to evaluate the intervention effects for family members. The psychoeducational intervention, Taking Care of Myself, showed promising effects for improving family members' stress appraisal and their use of reframing coping strategy (Ducharme, Lévesque, et al., 2005; Ducharme, Lévesque, Lachance, et al., 2005). As suggested, complex interventions should draw on theories or conceptual models in their development and evaluation (Michie et al., 2008). Changes of stress appraisal and coping strategies in participants who received the Taking Care of Myself intervention appear reasonable because this intervention was underpinned by the model of stress and coping and a perspective of empowerment and incorporated cognitive appraisal of stressors, empowerment, and use of coping strategies.

Similar to Muller et al. (2017), our review also found that family members' feelings of guilt significantly reduced immediately after the intervention or at 6-month follow up. This finding suggests that the educational intervention on grief management (Paun et al., 2015) and individualized telephone-delivered psychosocial support (Davis et al., 2011) have potential to improve family members' emotional distress after placement. Furthermore, depressive symptoms were measured in four studies (Davis et al., 2011; Gaugler et al., 2015; Paun et al., 2015; Robison et al., 2007); yet, the meta-analysis yielded a non-significant beneficial effect on reducing family members' depressive symptoms, which is consistent with a previous systematic review (Brooks et al., 2018). Non-significant effects were also found in the outcome of caregiver burden (Davis et al., 2011; Gaugler et al., 2015; Robison et al., 2007). This finding may indicate that depressive symptoms and caregiver burden did not adequately reflect family members' emotional experiences after long-term care placement; that is, they were not sensitive outcomes for these types of interventions. For other stress- and coping-related outcomes, mixed results were exhibited. The inconclusive findings may be attributed to the relatively small sample size in some studies (Davis et al., 2011; Gaugler et al., 2015), as it can adversely affect the statistical power. Furthermore, psychometric properties of some measuring instruments in the included studies (Ducharme, Lévesque, Lachance, et al., 2005; Robison et al., 2007) were unsatisfactory, which can also affect the reliability of the study results.

It is also worth noting that although only two studies evaluated resident outcomes, findings showed that interventions for family members had a beneficial effect on reducing their relatives' problematic behaviors (McCallion et al., 1999; Robison et al., 2007). This finding can be explained by the fact that interventions for family members may influence the way they interact with their relatives, and thus indirectly affect their relatives' behaviors. In addition, family members with lower levels of stress may become more likely to be involved in their relatives' care, which has the potential to enhance dementia care quality (Tjia et al., 2017) and thus lead to improved resident outcomes. Future studies are recommended to explore the mechanism on how interventions for family members could affect residents' behaviors.

Limitations

Several limitations must be considered when interpreting the findings of the current review. First, articles published in languages other than English and Chinese were not included in this review, which potentially introduces a language bias. Authors are more likely to report their results in an international, English-language journal if they are statistically significant (Egger et al., 1997). Language bias may therefore overestimate the effectiveness of the interventions. Second, only RCTs, as the most robust research design, were eligible for inclusion in this review. However, studies meeting strict methodological criteria may not generalize to the greater population (Cohen-Mansfield et al., 2014). Third, intervention types were not restricted in this review; that is, the included interventions were more likely to be considerably heterogeneous. Accordingly, most of the findings in this review were limited to narrative description rather than meta-analysis.

Implications for Future Practice and Research

Despite the inconclusive results of whether education/skill training, psychoeducation, and psychosocial support interventions are effective in reducing family members' stress and improving their coping, findings of this review imply potentially beneficial intervention effects for family members and their relatives with dementia. Therefore, health care providers in long-term care facilities are recommended to help family members identify and address stressors after placement. Policymakers should also make efforts to establish policies that could help address family members' stressors after long-term care placement of a relative with dementia.

Evidence in this field currently is insufficient and more well-designed RCTs with large sample sizes and use of theoretical frameworks are needed. In particular, more interventions should be developed and evaluated for populations of different sociocultural backgrounds, as all of the included studies in the current review were conducted in Western countries. Moreover, when evaluating the effects of interventions to family members, it is also recommended to measure resident outcomes, which can provide more empirical linkages between family members' stress and resident outcomes.

Conclusion

There is insufficient evidence regarding interventions that assist family members to cope with stressful situations after placing a relative with dementia into a long-term care facility. The identified interventions are diverse and can be classified as three categories, namely education/skill training, psychoeducation, and psychosocial support. Because of the limited amount of literature in this field, effectiveness of the interventions is inconclusive. More studies with robust designs are recommended to further explore the effectiveness of these types of interventions.

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Characteristics of the included studies

Author(s), YearCountryStudy designSample & settingTheoretical underpinningsInterventionComparisonDurationLength of follow-upOutcome measure(s) and main findings
McCallion et al., 1999USARCT66 primary family visitors of residents with moderate to severe dementia 5 skilled-care nursing homes I: 32 C: 34Not mentionedFamily visit education programme: four 1.5-hour group sessions and three 1- hour family conferences to address three major areas:

verbal communication;

nonverbal communication; and

effective structuring of family visits

Usual care: usual social and recreational programming offered by each nursing facility8 weeks3 and 6 months after the interventionFamily members:

Perception of caregiving hassles (CHS-M)

ADL

3 months: 3.4 vs. 1.9 (p>0.05)

6 months: 1.3 vs. 1.9 (p>0.05)

IADL

3 months: 1.2 vs. 0.6 (p>0.05)

6 months: 1.0 vs. 0.9 (p>0.05)

Behaviour problems

3 months: 5.5 vs. 5.9 (p>0.05)

6 months: 3.5 vs. 4.4 (p>0.05)

Cognitive functioning

3 months: 8.1 vs. 7.9 (p>0.05)

6 months: 5.4 vs. 5.6 (p=0.032)

Social network

3 months: 1.7 vs. 1.9 (p>0.05)

6 months: 1.6 vs. 1.3 (p>0.05)

Residents:

Depression (CSDD)

Mood-related signs

3 months: 2.6 vs. 2.7 (p=0.003)

6 months: 2.1 vs. 1.6 (p>0.05)

Behavioural disturbance

3 months: 1.4 vs. 1.4 (p>0.05)

6 months: 1.5 vs. 1.4 (p>0.05)

Physical signs

3 months: 0.5 vs. 1.1 (p=0.024)

6 months: 0.6 vs. 0.8 (p>0.05)

Cyclic functions

3 months: 0.9 vs. 1.0 (p=0.020)

6 months: 1.0 vs. 0.8 (p<0.001)

Ideational disturbance

3 months: 0.4 vs. 0.4 (p=0.040)

6 months: 0.3 vs. 0.5 (p=0.005)

Agitated behaviour (CMAI)

Physically aggressive behaviour

3 months: 0.3 vs. 0.0 (p>0.05)

6 months: 0.0 vs. 0.0 (p>0.05)

Physically nonaggressive behaviour

3 months: 1.4 vs. 1.1 (p>0.05)

6 months: 0.2 vs. 0.3 (p>0.05)

Verbally agitated behaviour

3 months: 1.9 vs. 0.9 (p>0.05)

6 months: 0.5 vs. 0.8 (p=0.005)

Ducharme, Lévesque, Lachance, et al., 2005Ducharme, Lévesque, et al., 2005CanadacRCT86 adult-daughter caregivers with primary responsibility for a relative who had been living in the residential centre for at least six months and who had been diagnosed with irreversible dementia 27 public long-term care and residential centres I: 45 C: 41Perspective of empowerment, the model of stress and copingGroup-based psychoeducational intervention that covered six themes:

how to feel at ease with my relative;

how to express my point of view to health care staff;

how to avoid emotional torment;

how to deal with small daily losses and prepare myself for the ultimate loss of my relative;

how to identify and call upon my support network and community services;

how to reorganize my life after my relative's institutionalization and take care of myself

No intervention10 weeks

Post-intervention and 3 months after the intervention

Psychological distress (PDI) §

Role overload (Scale by Pearlin et al.) Post-intervention: 51.2% vs. 31.7% (p<0.05)

Stress appraisal (SAM)

Perceived threat

Post-intervention: 68.9% vs. 34.2% (p<0.001)

Perceived challenge

Post-intervention: 51.1% vs. 29.3% (p<0.05)

Centrality of the stressful situation §

Control by self

Post-intervention: 55.6% vs. 31.7% (p<0.01)

Informal/formal social support

Post-intervention: 57.8% vs. 39.1% (p<0.05)

3 months: 62.2% vs. 29.3% (p<0.001)

Uncontrollability §

Global stress§

Coping strategy (CAMI)

Problem solving §

Reframing

Post-intervention: 71.1% vs. 31.7% (p<0.001)

3 months: 62.2% vs. 36.6% (p<0.05)

Stress management §

Robison et al., 2007USAcRCT388 family members of resident with dementia 20 nursing homes I: 209 C: 179Not mentioned

Training for families and facility staff to enhance communication and conflict-resolution techniques

A joint meeting with families, staff, and nursing home administrators to set concrete goals

Wait-list control: After all data evaluation, the researchers provided programme materials and training to the control facilities.6–7 h2 and 6 months after the interventionFamily members (at 2- and 6-months post-intervention):

Conflict with staff members (Interpersonal Conflict Scale) §

Hassles with staff (Nursing Home Hassles Scale)

Caregiver burden (ZBI) §

Depressive symptoms (CES-D) §

Residents (only at 2-month post-intervention):

Behavioural symptoms of dementia (CMAI)

Cursing or verbal aggression

−0.14 vs. 0.05 (p=0.02)

Other aggressive behaviours or self-abuse

−0.14 vs. −0.01 (p=0.05)

Inappropriate dress or disrobing

−0.12 vs. 0.03 (p=0.01)

Constant requests for attention or help

−0.17 vs. −0.02 (p=0.05)

Grabbing onto people, throwing things, tearing things, or destroying property

−0.10 vs. 0.03 (p=0.07)

Pacing, aimless wandering, trying to get to a different place

−0.10 vs. 0.03 (p=0.05)

General restlessness, performing repetitious mannerisms, tapping, strange movements

−0.10 vs. 0.03 (p=0.08)

Davis et al., 2011USARCT46 family caregivers who placed a relative with dementia in nursing home care within the past 2 months and provided care for the relative for at least 6 months, 4 h per day, prior to admission 26 nursing homes I: 24 C: 22Psychosocial transition, the model of stress and coping, and a systems view of family functioning (e.g., McMaster model of family functioning)Telephone-delivered psychosocial intervention to

provide emotional support;

direct caregivers to appropriate resources; and

teach caregivers strategies to cope with ongoing problems during the transition to institutional placement

Standard care: community- based mental health or support resources3 months

Post-intervention

Feeling of guilt (Caregiver Guilt Questionnaire for Nursing Home Placement)

36.96 vs. 29.14 (p=0.03)

Depressive symptoms (CES-D)

15.04 vs. 9.36 (p=0.92)

Burden (ZBI)

24.21 vs. 16.23 (p=0.17)

Hassles with staff (Nursing Home Hassles Scale)

6.71 vs. 4.90 (p=0.02)

Paun et al., 2015USAcRCT (pilot study)83 family caregivers within the first year after placing a relative with ADRD in long-term care 15 nursing homes & assisted living facilities I: 34 C: 49A guide to supporting family caregivers through the Alzheimer's disease trajectory: grief and personal growthGroup meetings to teach family members

knowledge of dementia;

communication, conflict resolution, and hands-on care skills; and

grief procession skills

Two check-in calls12 weeksPost-intervention and 6 months post-baseline

Exacerbators of grief (FPCR)

Sense of loss

Post-intervention: −0.59 vs. 1.43 (p=0.159)

6 months: −1.09 vs. 0.86 (p=0.195)

Sense of guilt

Post-intervention: −1.51 vs. −0.12 (p=0.188)

6 months: −1.65 vs. 0.67 (p=0.029)

Role captivity

Post-intervention: 0.97 vs. 0.6 (p=0.790)

6 months: 0.04 vs. −0.39 (p=0.798)

Conflict with facility staff

Post-intervention: −0.06 vs. 0.33 (p=0.805)

6 months: 1.50 vs. 1.04 (p=0.765)

Chronic grief (MM-CGI)

Post-intervention: −4.00 vs. −2.78 (p=0.775)

6 months: −3.24 vs. −1.71 (p=0.726)

Personal sacrifice burden

Post-intervention: 0.85 vs. −2.2 (p=0.114)

6 months: 0.29 vs. −2.12 (p=0.215)

Heartfelt sadness and longing

Post-intervention: −3.03 vs. 0.8 (p=0.027)

6 months: −2.21 vs. 0.84 (p=0.090)

Worry and felt isolation

Post-intervention: −1.82 vs. −1.37 (p=0.771)

6 months: −1.32 vs. −0.43 (p=0.568)

Depressive symptoms (CES-D)

Post-intervention: −0.76 vs. −1.24 (p=0.774)

6 months: −1.09 vs. −0.16 (p=0.601)

Gaugler et al., 2015USARCT (pilot study)36 primary family caregivers whose relative with dementia was admitted to a RLTC facility in the past 12 months Nursing home or assisted living memory care unit I: 17 C: 19Not mentionedPsychosocial intervention

Psychoeducation

Promotion of family-staff communication

Problem solving

Patient behaviour management strategies

Concrete planning

Making families aware

Ad hoc counselling

Quarterly check-in calls4 months

4 and 8 months following enrolment in the intervention

Caregiver stress

ZBI

4 months: 17.39 vs. 19.75 (p=0.31)

8 months: 15.27 vs. 20.07 (p=0.06)

PSS

4 months: 15.71 vs. 19.82 (p=0.10)

8 months: 14.42 vs. 20.50 (p=0.06)

Role Overload Measure

4 months: 3.15 vs. 3.83 (p=0.08)

8 months: 2.97 vs. 3.71 (p=0.04)

Caregiver Distress Scale of the NPI-Q

4 months: 7.84 vs. 14.50 (p=0.02)

8 months: 8.18 vs. 12.73 (p=0.19)

Depressive symptoms

CES-D

4 months: 33.47 vs. 35.18 (p=0.63)

8 months: 33.50 vs. 36.94 (p=0.42)

GDS

4 months: 3.00 vs. 3.88 (p=0.41)

8 months: 4.58 vs. 3.59 (p=0.91)

Caregiver adaptation to placement

Satisfaction with facility staff (FCPR)

4 months: 5.22 vs. 5.15 (p=0.83)

8 months: 4.91 vs. 5.02 (p=0.81)

Satisfaction with RLTC (Scale by Aneshensel et al.)

4 months: 3.39 vs. 3.32 (p=0.73)

8 months: 3.44 vs. 3.35 (p=0.61)

Closeness of relationship with the relative (Scale by Aneshensel et al.)

4 months: 1.97 vs. 2.23 (p=0.38)

8 months: 2.19 vs. 2.16 (p=0.93)

Intervention content of the included studies

Intervention componentFVEP (McCallion et al., 1999)TCMI (Ducharme, et al., 2005)PIC (Robison et al., 2007)FITT-NH (Davis et al., 2011)CGMI (Paun et al., 2015)RCTM (Gaugler et al., 2015)
Promotion of communication
Emotional support/management
Conflict-resolution techniques
Dementia-related knowledge
Patient behavior management strategies
Problem solving
Stressor identification
Social support resources
Information about the facility
Hands-on care skills
Concrete goal planning
Ad hoc counselling
Authors

Ms. Hui is PhD Candidate, Mr. Yang is PhD Candidate, and Dr. Lee is Professor Emeritus, The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

The authors thank Dr. Kai Chow Choi at The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, for his valuable statistical help.

Address correspondence to Zhaozhao Hui, MSN, PhD Candidate, The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Room 601, 6/F, Esther Lee Building, Shatin, NT, Hong Kong SAR, 999077, China; email: huizhaozhao93@link.cuhk.edu.hk.

Received: April 22, 2020
Accepted: June 23, 2020
Posted Online: September 23, 2020

10.3928/19404921-20200918-02

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