A chronic grief intervention for dementia family caregivers in long-term care.

521040 research-article2014

WJNXXX10.1177/0193945914521040Western Journal of Nursing ResearchPaun et al.

Intervention Studies

A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care

Western Journal of Nursing Research 2015, Vol. 37(1) 6–27 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0193945914521040 wjn.sagepub.com

Olimpia Paun1, Carol J. Farran1, Louis Fogg1, Dimitra Loukissa2, Peggy E. Thomas3, and Ruby Hoyem1

Abstract Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer’s or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasiexperimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers’ knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in

1Rush

University College of Nursing, Chicago, IL, USA Park University School of Nursing, Chicago, IL, USA 3Rush Day Hospital, Chicago, IL, USA 2North

Corresponding Author: Olimpia Paun, Rush University College of Nursing, 600 S. Paulina St. # 1064K, Chicago, IL 60612-3832, USA. Email: [email protected]

Downloaded from wjn.sagepub.com at FLORIDA INTERNATIONAL UNIV on May 28, 2015

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caregivers’ heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. Keywords caregiver grief, dementia, long-term care There are over 5.2 million Americans living with Alzheimer’s disease or a related dementia (ADRD). In the absence of major medical breakthroughs, prevalence is expected to nearly triple by 2050 (Alzheimer’s Association, 2013). Nearly 15.4 million Americans, primarily family members of persons with ADRD, provided 17.5 billion hours of unpaid care in 2012 (Alzheimer’s Association, 2013). Because ADRD demands ever-increasing care, family caregivers suffer long-term mental and physical health effects that place them at risk for premature death (Hebert, Scherr, Bienias, Bennet, & Evans, 2003; Schulz et al., 2004). Depression is one of the most common mental health effects of ADRD caregiving (Marwit & Meuser, 2002; Richardson, Lee, Berg-Weger, & Grossberg, 2013; Sanders & Adams, 2005). In addition, grief, considered a normal reaction to loss, in the context of ADRD caregiving can become a chronic emotional state because the caregivers suffer gradual losses over many years (Boss, 2011; Chan, Livingston, Jones, & Sampson, 2013). Chronic grief increases psychological morbidity and suicidality in ADRD caregivers, conditions that often persist after the care recipient (CR) has died (Latham & Prigerson, 2004; Schulz & Beech, 1999). An estimated 67% of persons diagnosed with ADRD die in long-term care (Mitchell, Teno, Miller, & Mor, 2005). After long-term care placement, family caregivers do not renounce their roles, and their grief is often exacerbated by the new loss, continued guilt, and feelings of role captivity (Bramble, Moyle, & McAllister, 2009; Givens, Prigerson, Kiely, Shaffer, & Mitchell, 2011; Kellett, 1999; Maas et al., 2004; Specht et al., 2000). Moreover, these factors can contribute to conflict with long-term care facility staff. Although placement constitutes a stressful turning point for persons with ADRD and their caregivers alike, facilities generally do not provide these families with grief-focused support specific to this transition (Kelley, Swanson, Maas, & Tripp-Reimer, 1999; Paun & Farran, 2006; Ryan & Scullion, 2000). Among the existing interventions for ADRD caregivers who placed a relative in long-term care, the Chronic Grief Management Intervention (CGMI) specifically addresses caregiver chronic grief. This article presents the results of a pilot study that tested the CGMI for implementation feasibility and the effects on caregiver mental health outcomes.


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Chronic Grief in ADRD Caregivers The majority of ADRD family caregiving interventions have targeted caregivers that provide home-based care for relatives. These interventions primarily focused on caregiver education, emotional support, and skill building, and resulted in moderate effects on mental health outcomes (Elvish, Lever, Johnstone, Cawley, & Keady, 2012; Schulz, Martire, & Klinger, 2005; Sörensen, Pinquart, & Duberstein, 2002). Over the past decade, more attention has been paid to caregiver chronic grief defined as an intrinsic aspect of the dementia caregiving experience (Meuser, Marwit, & Sanders, 2004; Ott, Kelber, & Blaylock, 2010; Ott, Sanders, & Kelber, 2007). Meuser and Marwit (2001) developed a stage-sensitive model of caregiver grief and found that after placing their relatives with advanced Alzheimer’s disease (AD) in long-term care, spouse and adult-child caregivers alike expressed guilt and regret over placement with chronic grief continuing to intensify after the care recipients’ deaths. Moreover, Ott et al. (2007) found that caregivers who placed their spouses in long-term care experienced more sadness, longing, worry, isolation, and personal sacrifice burden than adultchild caregivers who placed their parents. The few interventions specifically designed to address chronic grief in ADRD caregivers were tested only with caregivers who were still caring for their family member in home-based settings. Sanders and Sharp (2004) pilottested the effects of a 5-week psychoeducational group intervention targeting loss and grief in caregivers of persons in the middle and late stages of AD living in the community. The authors pre- and post-tested the caregivers in the intervention group (n = 10) and only post-tested the caregivers in the control group (n = 7), using the Marwit-Meuser Caregiver Grief Inventory (MM-CGI; Marwit & Meuser, 2002) to measure grief. Paradoxically, they found that compared with the control group, caregiver grief increased in the intervention group from pre- to post-test. The authors explained that these results may be due to caregivers requiring longer than 5 weeks to process grief. They also cautioned that the findings were not statistically significant due to the small sample size. Ott et al. (2010) designed “Easing the Way,” a highly individualized, multicomponent grief intervention and implemented it with 20 communitybased AD spouse caregivers over an average of 4.8 months (SD = 0.9). Significant improvements from baseline to completion and follow-up were found in measures of grief (MM-CGI), depression, anxiety, positive states of mind, and self-efficacy in 12 caregivers who continued care at home. These findings contradict those of Sanders and Sharp (2004), suggesting that caregivers indeed require more time to process caregiving-related emotions. The eight caregivers, whose spouses had been placed in long-term care (7) or had


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died (1) post-intervention, did not maintain these positive effects at the 8-month follow-up (Ott et al., 2010). These findings further support existing evidence that post placement, dementia caregivers continue to experience new losses, guilt, and role captivity (Bramble, Moyle, & Shum, 2011; Maas et al., 2004). The few studies of interventions with ADRD family caregivers post longterm care placement all focus on communication, conflict resolution, and collaboration between facility staff and residents’ families. The “Family Involvement in Care” (FIC) was designed to increase collaboration between family caregivers and nursing home staff as they were caring for their family members with ADRD (N = 183). Findings indicated that among study participants receiving the intervention, family caregivers had decreased stress levels, whereas staff reported improved attitudes toward family caregivers of residents with AD (Maas et al., 2004). Bramble et al. (2011) replicated the FIC intervention in a quasi-experimental study (N = 116) conducted over 9 months in a long-term care facility in Queensland, Australia. They found that although the FIC had positive effects on caregivers’ knowledge of dementia, it had negative effects on caregivers’ satisfaction with facility staff. The authors explained that a lack of support in the host facility constituted a major barrier to establishing a successful partnership between family caregivers and facility staff. The “Partners in Caregiving” (PIC) program addressed communication and conflict-resolution issues that arose between caregivers who had placed relatives with ADRD in nursing homes and facility staff caring for them. The PIC was tested in a randomized trial with 932 family caregivers and 655 staff members recruited from 20 nursing homes (Pillemer et al., 2003) and was later replicated in another randomized trial with 388 family members and 384 staff members recruited from 20 dementia care units (Robinson et al., 2007). Both studies found significant improvement in attitudes and communication between staff and families. Among participants receiving the intervention, families of residents in dementia care units reported less conflict with staff and in turn, staff members reported they were less likely to quit their jobs (Robinson et al., 2007). A “Family Visit Education Program” was tested in a randomized trial with 66 family caregivers and their family members with dementia who were recruited from five midsize facilities. Findings indicated that compared with the control group, the education group reported improved communication between primary family members/visitors, and residents and staff (McCallion, Toseland, & Freeman, 1999). These studies present compelling evidence that post placement, family caregivers benefit from interventions targeting communication and collaboration


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with facility staff members. The missing link in this literature is on interventions targeting caregiver chronic grief post placement and its effects on caregivers’ mental health outcomes. Based on these findings and inspired by the “Guide to Support Family Caregivers Through the Alzheimer’s Disease Trajectory: Grief and Personal Growth” (Ott, Reynolds, Schlidt, & Noonan, 2006), we created a multicomponent caregiver CGMI for ADRD caregivers who are within their first year since placement of a family member in long-term care. A complete description of the CGMI was published elsewhere. (Paun & Farran, 2011). Our study integrated three conceptually related models to create an adapted model that places loss and chronic grief at the center of the AD caregiving experience (Meuser et al., 2004). This model suggests that an intervention focused on improving knowledge and skills (communication, conflict resolution, grief processing) will assist caregivers in managing the losses associated with ADRD caregiving and placement. We designed the CGMI to mediate between caregivers’ background and contextual factors (Pearlin, Mullan, Semple, & Skaff, 1990; Whitlatch, Schur, Noelker, Ejaz, & Looman, 2001), the exacerbators of grief in the long-term care facility (lack of ADRD knowledge and skills, impact of losses, guilt, role captivity, and conflict with facility staff; Maas et al., 2004) and caregiver proximal outcomes (knowledge and skill) and distal outcomes (chronic grief and depression) (See Figure 1).

Purpose The purpose of this pilot study was to determine the feasibility and the preliminary effects of the CGMI, a 12-week, multi component group intervention designed to improve caregivers’ knowledge of late stage ADRD, communication, conflict resolution and grief processing skills, and chronic grief and depression. In the first year after placing their family members with ADRD in long-term care, caregivers who received the intervention were expected to report improved knowledge and skill and decreased chronic grief and depression. Specific aims of the study were to: 1. Determine the feasibility (recruitment, retention, attendance, and program satisfaction) of implementing the CGMI. 2. Evaluate the preliminary effects of the CGMI on caregiver outcomes at 3 (immediately post-intervention) and 6 (post-baseline) months, controlling for background characteristics and exacerbators of grief (losses, guilt, role captivity, and conflict with facility staff). We tested the following hypotheses:


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Background Demographics Contextual Factors

Living With Chronic Grief Intervention ADRD Knowledge Communication Skill Conflict Management Skill Grief Processing Skill

Length of time since placement Length of time since ADRD diagnosis Visiting pattern

CG Outcomes Proximal: Knowledge Skill Distal:

Exacerbators of Chronic Grief in the Long-Term Care Facility Lack of ADRD knowledge and skills Impact of loss Guilt Role captivity Conflict with facility staff

Chronic Grief Depression

Figure 1. Model for AD caregiver chronic grief in the long-term setting. Note. AD = Alzheimer’s disease.

Hypothesis a: Compared with the no-treatment comparison group, caregivers in the CGMI group will experience an increase in knowledge and skill from baseline to 3 and 6 months. Hypothesis b: Compared with the no-treatment comparison group, caregivers in the CGMI group will experience a decrease in chronic grief and depression from baseline to 3 and 6 months.

Method We used a pre-test/multiple post-test quasi-experimental design with a notreatment comparison group to examine the feasibility and the preliminary effects of the CGMI, an intervention administered over 12 consecutive weeks in a group session format. Data were collected at baseline, 3 months (immediately post-intervention), and 6 months (post-baseline) from a sample of 83 participants. Caregivers in the no-treatment comparison group received two brief phone calls at 1.5 months and 4.5 months post-baseline to maintain contact and obtain updates. Sixteen long-term care facilities were randomly


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assigned to either no-treatment comparison or intervention conditions (groups). Participants received a $10 gift card at each assessment point, for a total of $30. Institutional Review Board approvals were secured from the parent institution and two long-term care systems prior to study initiation.

Sample and Setting Caregiver inclusion criteria were as follows: (a) able to speak, read, and write English; (b) care recipient diagnosed with AD or a related dementia; (c) identified as primary caregiver of the care recipient; (d) study entry to occur within the first year of care recipient’s placement in long-term care; and (e) able to commit to 12 consecutive weekly sessions. Exclusion criteria were (a) involvement in another ADRD family caregiving study, (b) involvement in any individual or group grief counseling, and (c) a pattern of infrequently visiting the care recipient in the facility. Caregivers were invited to join the study through flyers, newsletters, and customized letters made available in dementia care units and at numerous dementia care presentations delivered in the 16 selected long-term care facilities. Of the total 151 referrals, we screened 114 and enrolled 93 participants. Of these, 83 completed the study (n = 49-control; n = 34-intervention). Only three caregivers dropped out of the intervention group after attending one or two sessions. The other seven participants who dropped out were in the control group. The main reasons reported were lack of interest/time and care recipient’s death (See Figure 2). We assigned six facilities to the intervention condition (group) and successfully recruited from five. Facilities represented an even mix of not-for-profit nursing homes (3) and for-profit assisted living facilities (3), spread over three counties. Nursing homes were of medium size (100-150 beds) and the assisted living facilities were of small size (50-60 beds) and all had special memory care or dementia units. All but one of the facilities were located in suburban areas and provided care for a Caucasian clientele. The sole facility with a predominantly African American clientele was located in the inner city. Ten facilities spread over four counties were assigned to the control condition (group) and they also represented a mix of for-profit (3 assisted living and 2 nursing home facilities) and not-for-profit (5 nursing homes). With the exception of the three assisted living facilities that were of small size, all other facilities were of medium size. Two nursing homes located in the inner city were serving a predominantly African American population, whereas the rest of the facilities were located in suburban areas and served a predominantly Caucasian population.


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Referred (n=151)

Not screened: 37

Screened: 114

No answer to follow-up contact (n=12); no time (n=6); no interest (n=4); distance/travel (n=6); other (n=9)

Not Enrolled: 21

Enrolled: 93

CR died (n=2); refused to sign ICF/HIPAA (n=4); unexpected events/ no longer qualified (n=8); declined health (n=4); other (n=3)

Dropout: 10 Completed study: 83 CR died: 12

Intervention (n=3): dropped out after 1st/2ndsession - not interested; Control (n=7) – CR death, medical problems; lost to f/u

CR died: 5

Control: 49 CR died: 8

Treatment: 34 CR Died: 4 CR death during intervention (n=2); CR death at f/u (n=2)

Figure 2. CGMI consort table.

Note. CGMI = Chronic Grief Management Intervention; CR = Care Recipient; ICF = Informed Consent Form; HIPAA = Health Insurance Portability and Accountability Act.

Intervention and Procedures In designing the CGMI manual, we used evidence from dementia caregiving interventions, dementia caregiving chronic grief, and interventions in longterm care settings (Adams & Sanders, 2004; Boss, 1999; Kuhn, 2001; Maas et al., 2004; McCallion et al., 1999; Ott et al., 2007; Paun & Farran, 2006; Pillemer et al., 2003; Rando, 2000; Robinson et al., 2007; Specht et al., 2000; Worden, 2002). The content of the 12 weekly group sessions was designed to accomplish the study’s purpose of increasing caregivers’ knowledge (late stage ADRD and long-term care) and skills (communication and conflict resolution), and to process their chronic grief. The first three sessions addressed


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caregiver knowledge about late stage ADRD, information about the long-term care facility, and community resources, (Maas et al., 2004; Ott et al., 2007; Paun & Farran, 2006; Specht et al., 2000). Sessions 4 through 6 addressed caregiver skills in communication, conflict resolution, and hands-on care in the context of long-term care (Maas et al., 2004; McCallion et al.,1999; Pillemer et al., 2003; Robinson et al., 2007), and Sessions 7 through 12 addressed caregiver grief management skills such as (a) recognizing losses, (b) processing reactions to separation, (c) re-experiencing the relationship with the care receiver, (d) relinquishing old attachments, (e) readjusting, and (f) investing in new attachments; processing group closure (Adams & Sanders, 2004; Boss, 1999; Kuhn, 2001; Rando, 2000; Worden, 2002). A complete description of the intervention development was published elsewhere (Paun & Farran, 2011). The intervention consisted of 12, 60 to 90 minute-long, weekly group meetings, that were conducted by the PI (principal investigator) and two comoderators. We implemented the intervention with a total of eight groups in five different facilities as follows: three consecutive groups in one nursing home, two consecutive groups in one assisted living facility, and one group each in another nursing home and two other assisted living facilities. One facility was located in the inner city, whereas the rest (n = 4) were located in suburban areas. We were unable to successfully recruit from the sixth facility randomly assigned to the treatment condition as there were no volunteers. Group membership ranged between three to six caregivers. At the beginning of each series, moderators introduced themselves, described their roles, and invited all group members to briefly introduce themselves and share information about their care recipient. Group sessions began with a brief review of the ground rules, emphasizing confidentiality and reminding participants of informed consent agreement that sessions will be audiotaped. At the first session, moderators gave a brief overview of the study and of the intervention manual. Caregivers received a copy of the intervention manual they were able to keep after the intervention ended. The manual was written in large font using lay language and was structured by sections that coincided with group sessions for easy use and handling. Treatment fidelity was maintained in terms of treatment delivery by having group moderators follow a group implementation protocol manual and undergoing an 8-hour pre-implementation preparatory workshop, to become familiarized with the content and discuss possible group dynamics scenarios. All three group interventionists were advanced practice psychiatric nurses with extensive experience in group work. One interventionist who was African American co-moderated all African American groups with the PI.


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Measures With the exception of background and situational characteristics that were used only at baseline, we used standardized measures to collect data at baseline, 3 months (immediately post-intervention), and 6 months (post-baseline). Background measures. We collected caregiver and care recipient sociodemographic information at baseline to describe their background variables. Items were drawn from the initial population survey used by the East Boston site for the Established Populations for Epidemiologic Studies of the Elderly project (Coroni-Huntley, Brock, & Ostfeld, 1986). Situational characteristics. We asked three direct questions at baseline to assess (a) number of years since care recipient was diagnosed with ADRD, (b) time since long-term care placement, and (c) caregiver visiting pattern (times per week). Caregiver knowledge. We used the 22-item Knowledge of Alzheimer’s Test (KAT) to measure caregivers’ knowledge about the disease process, resident behaviors, and care of the resident with ADRD in the long-term care facility. The maximum score was 22 correct answers. Test–retest reliability with 12 caregivers at 1-month interval was .82 (p < .05), KR 21 (n = 50) = .61 (Specht et al., 2000). Skill outcomes. We measured caregivers’ conflict management skill outcomes using the Family Perception of Caregiving Role (FPCR) subscale for family caregiver conflict with nursing home staff related to caregiving (Maas et al., 2004). We did not use a stand-alone caregiver communication skills instrument, as we considered these skills an intrinsic part of conflict management. A complete description of the entire instrument is provided below. Exacerbators of grief in the long-term care facility environment. We used the 61-item FPCR that contains four subscales to measure four dimensions of role stress: (a) loss of relationship aspects with relatives diagnosed with dementia, (b) guilt from perceived failure in caregiving, (c) role captivity resulting from obligations of caregiving, and (d) conflict with facility staff related to caregiving. Responses are rated on a 7-point Likert scale (1 = strongly disagree to 7 = strongly agree). Items are summed to form subscale scores and a total FPCR score. Cronbach’s alpha coefficients ranging from .70 to .84 indicate high internal consistency reliability for each subscale and for the total FPCT score. Test–retest reliability with 12 caregivers at 3-week intervals was .79 for total FPCR total score (Maas et al., 2004).


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Caregiver chronic grief. We selected the 50-item MM-CGI as our primary outcome measure because it is the only available empirically derived tool designed to assess grief in caregivers of persons with AD (Marwit & Meuser, 2002). This inventory was developed based on a total of 184 personal grief statements made in 16 focus groups by a sample of 45 adult-child and 42 spousal dementia caregivers. A factor analysis generated a 50-item scale with three primary subscales: (a) Personal Sacrifice Burden, including 18 items measuring individual losses experienced as a result of caregiving; (b) Heartfelt Sadness and Longing, including 15 items measuring interpersonal emotional reactions in response to caregiving; and (c) Worry and Felt Isolation, including 17 items measuring the feelings of losing the connections with and support from others. MM-CGI items are rated on a 5-point scale (1 = strongly disagree to 5 = strongly agree) with a possible range of 50 to 250 points. Grief scores may be calculated by subscale and then added to formulate a total grief score (TG). Total grief scores ranging from 113 to 175 points indicate common grief reactions. Any TG scores above 175 indicate high levels of caregiver grief, requiring formal intervention and support, whereas any TG scores below 113 indicate either positive adaptation or suppressed grief that requires thorough assessment. The inventory was pilot-tested with a new sample of 83 adult-child and 83 spousal caregivers, representing both male and female caregivers, as well as all stages of dementia progression. Cronbach’s alpha scores ranged from .90 to .96, indicating high internal consistency reliability for each subscale and for their combined TG score. Correlation (convergent and divergent) of each subscale with related measures (Beck Depression Inventory, Anticipatory Grief Scale, Caregiver Strain Index, Caregiver Well-Being Scale-Basic Needs, and Perceived Social Support-Family Questionnaire) established the inventory’s construct validity. The MM-CGI was re-tested with the original sample 9 months later (37% response rate). Test–retest Cronbach’s alpha scores ranged from .71 to .75, indicating stability of the measure in all three subscales over time (Marwit & Meuser, 2002). Depression. We used the 20-item version of The Center for Epidemiological Studies Depression Scale (CES-D) to measure depression symptoms, as it has been extensively used with family caregivers and has strong psychometric properties. Responses were based on a 4-point frequency rating (0 = rarely or none of the time to 3 = all of the time) with a possible range of 0 to 60. A score above 16 indicates existence of depressive symptoms. Internal consistency reliability ranges from r = .85 to .90 and test–retest reliability ranges from r = .45 to.70 (Radloff, 1977).


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Feasibility measures. We collected recruitment, retention, and attendance data, and we measured program satisfaction with a seven-item instrument modeled after the customer satisfaction tool used in a prior study (Farran, Bienias, Gilley, Lindeman, & McCann, 1998). Responses were rated on a 4-point scale (1 = not at all to 4 = very much). We collected program satisfaction data at 3 and 6 months.

Analysis Specific Aim #1: To determine the feasibility of implementing the CGMI, we evaluated recruitment, retention, attendance, and program satisfaction. For this report, we focused on descriptive analyses (item range, frequencies, mean, and standard deviation). Specific Aim#2: To determine the intervention effects, we used a onetailed 0.05 significance level for all statistical tests. All analyses were performed on an intent-to-treat basis. Missing data were imputed using a multiple imputation computer program. Caregiver knowledge was analyzed using a repeated measures analysis of variance (ANOVA) with one within-subjects factor: time (baseline = pre-intervention; 3-month followup = end of the intervention; 6-month follow-up = 6 months post baseline) and one between-subjects factor: treatment group (grief intervention and comparison). The hypothesis was that the KAT scores would rise at 3- and 6-month follow-up in the treatment group. The effectiveness of the intervention was tested by examining the time by treatment group interaction term. If the intervention was effective, the interaction term should have been statistically significant. In addition, we hypothesized that simple main effects analysis will indicate that knowledge will be equal at preintervention, then higher at the 3- and 6- month follow-up in the intervention group. To better interpret these results, we also reported effect sizes for the intervention. Effect sizes describe the size of the effects one obtains from an intervention, independent of sample size. As such, effect sizes can be more useful indicators of intervention effectiveness than are conventional probability statements, which are dependent on sample size, as well as how effective the treatment is. Caregiver conflict resolution skills and caregiver chronic grief and depression were analyzed using the same repeated measures ANOVA design described above. The hypothesis was that FPCR (subscale measuring conflict with NH staff) scores would decrease at the 3- and 6-month follow-up in the treatment group. Grief scores measured with the MM-CGI and depression


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Table 1. Sample Characteristics. Total (N = 83) Control (n = 49) Intervention (n = 34) Caregivers (% women) Care recipients (% women) Race Caucasian African American Relationship Spouse Daughter Son Other

88.0% 74.4%

89.8% 81.6%

85.3% 63.6%

86.7% 13.3%

83.7% 16.3%

91.2% 8.8%

16.9% 57.8% 7.2% 18.1%

12.2% 57.1% 6.1% 24.5%

23.5% 58.8% 8.8% 8.8%

scores measured with the CES-D were expected to decrease in the intervention group at the 3- and 6-month follow-up. The plan of analysis remained identical as that described above.

Results Participant Characteristics We found no significant differences in caregiver characteristics between control and intervention groups. Our sample was predominantly Caucasian and female (both caregivers and care recipients) with approximately two thirds being adult child caregivers (see Table 1). The average caregiver age was 60.69 years (SD = 10.64), while the average care recipient age was 83.38 years (SD = 6.46). In spite of our efforts to recruit more African American participants, we accomplished an overall modest 13% in this population, due in part to gaining access to only three facilities serving a predominantly African American clientele. Overall, caregivers were well educated, averaging 15.68 (SD = 3.11) years of school, and visited their family members in the facilities on an average of 2.91 times per week (SD = 2.27). The average time since care recipients’ placement in long-term care was 7.10 months (SD = 6.80), ranging from 1 month to 12 months.

Feasibility Recruitment, retention, and attendance. Caregivers were recruited through coordinated efforts to establish mutually beneficial relationships with longterm care facilities in a large Midwest metropolitan area. Building trusting


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relationships with long-term care facilities took longer than we anticipated, thus, we had to obtain an additional 1 year no-cost extension to complete the program in 3 rather than 2 years. We had access to a pool of 28 long-term care facilities that had dementia care units (a mix of assisted living facilities and nursing homes) and successfully assigned 16 of them to either intervention condition (n = 6) or control (n = 10). Facilities were matched by size and type of ownership. The remaining 12 facilities were either not interested in research participation or simply did not respond to our repeated contacts. In addition to establishing collaborations with long-term care facilities, our recruitment efforts included presentations at over 30 community events, conferences, health fairs, and meetings targeting dementia family caregivers. We received a grand total of 151 referrals of family caregivers of persons with ADRD who were residents in long-term care facilities. Of these, we screened 114 caregivers and 93 of them enrolled in the study. A total of 83 caregivers completed the study (49 in the control group and 34 in the intervention group). Of the caregivers assigned to the intervention, only three dropped out after the first or second group session due to a lack of interest or time resulting in a 90% retention rate. In the control group, we had a retention rate of 86%, with seven caregivers dropping out due to their own medical problems or the care recipients’ deaths. Our overall retention rate was 89%. Intervention attendance reached an average of 10.44 sessions out of 12 (SD = 1.50), ranging from 5 (one caregiver who had surgery) to 12 (seven caregivers) sessions. Program satisfaction. To assess caregiver satisfaction with the intervention, we conducted 3- and 6-month follow-ups using a seven-item questionnaire (Farran et al., 1998). Responses were rated on a 4-point scale with (1 = not at all to 4 = very much). Overall, caregivers were highly satisfied with the information learned in group discussions, scoring a 3.67 mean (SD = 0.637) at 3 months (n = 24) and a 3.45 mean (SD = 0.827) at 6 months (n = 29) and highly rated the group facilitators’ sensitivity to their needs, scoring a 3.96 mean (SD = 0.204) at 3 months (n = 24) and a 3.93 mean (SD = 0.258) at 6 months (n = 29). Intervention effects on caregiver outcomes. Baseline comparisons of study outcomes indicated that caregivers in the intervention group scored significantly higher on loss of relationship (p = .007) and heartfelt sadness and longing (p = .017) (Table 2). At 3 months, we found significant improvement in the intervention group in heartfelt sadness and longing (p = .027) and promising effect sizes (ES) in the intervention group’s scores on heartfelt sadness and longing (0.49), loss of relationship (0.33), guilt (0.29), and knowledge


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Table 2. Mean Baseline Comparisons of Study Outcomes.

Baseline variables Conflict with staff Captivity Guilt Loss Personal sacrifice burden Heartfelt sadness and longing Worry and felt isolation CES-D score KAT score MM-CGI

Total (N = 83)

Control (n = 49)

Intervention (n = 34)

M ± SD

M ± SD

M ± SD

t

p

35.3 ± 7.5 25.8 ± 11.1 16.0 ± 5.1 32.0 ± 9.5 51.6 ± 15.3 48.5 ± 14.1 40.2 ± 12.9 13.6 ± 11.4 16.8 ± 2.0 140.2 ± 37.00

34.0 ± 7.4 24.3 ± 10.5 15.2 ± 4.7 29.5 ± 9.8 49.8 ± 15.4 44.9 ± 14.4 38.0 ± 11.8 11.9 ± 10.6 16.7 ± 2.0 132.7 ± 36.2

37.1 ± 7.6 27.6 ± 11.4 16.8 ± 5.3 35.2 ± 8.3 52.7 ± 14.5 52.2 ± 12.0 42.0 ± 13.7 14.7 ± 11.6 16.9 ± 1.9 147.0 ± 35.8

1.87 1.12 1.41 2.78 0.86 2.45 1.44 1.11 0.33 1.78

.067 .264 .162 .007 .395 .017 .154 .269 .745 .079

Note. CES-D = Center for Epidemiological Studies Depression Scale; KAT = Knowledge of Alzheimer’s Test; MM-CGI = Marwit-Meuser Caregiver Grief Inventory.

(−0.38). (Please note that the mathematically negative sign in the KAT score and the positive signs for heartfelt sadness and longing, loss of relationship, and guilt, all indicate improvement; Table 3). At the 6 month follow-up, we found a significant drop in guilt (p = .029) in the intervention group and sustained ES in caregivers’ scores on heartfelt isolation and longing (0.38), loss of relationship (0.30), and guilt (0.49); Table 4). Baseline depression scores for caregivers in both groups were not significantly different. Only about one third of the total sample scored above the CES-D cutoff of 16 points, indicating presence of depressive symptoms at baseline (34.7% control; 32.4% intervention) and there were no significant effects in caregivers’ depression scores at the 3- and 6-month follow-ups.

Discussion Our recruitment strategies were congruent with existing literature. We recognized at the outset that to be successful, it was essential to create partnerships based on trusting and mutually respectful relationships with long-term care facilities (Crawford Shearer, Fleury, & Belyea, 2010; Maas, Kelley, Park, & Specht, 2002). Building these partnerships involved spending extended periods of time in the facilities, meeting with key nursing staff, social workers, and administrators to present the project and answer any questions they had about recruitment and intervention implementation. Gaining entry into facilities caring for a predominantly African American clientele posed additional challenges. As anticipated, we initially met resistance based on the deeply rooted mistrust non-White communities have in


21

Paun et al. Table 3. Mean Changes in Study Outcomes From Baseline to 3 Months.

Variables Conflict with staff Captivity Guilt Loss Personal sacrifice burden Heartfelt sadness and longing Worry and felt isolation CES-D score KAT score MM-CGI

Control (n = 49)


M ± SD

M ± SD

F ratio (1, 81)

ES

p

0.33 ± 7.90 0.6 ± 5.20 −0.12 ± 4.15 1.43 ± 6.93 −2.2 ± 8.23 0.8 ± 5.93 −1.37 ± 6.18 −1.24 ± 7.13 0.45 ± 1.84 −2.78 ± 15.64

−0.06 ± 5.48 0.97 ± 7.42 −1.51 ± 5.40 −0.59 ± 5.42 0.85 ± 9.07 −3.03 ± 9.58 −1.82 ± 8.05 −0.76 ± 7.94 1.15 ± 1.89 −4.00 ± 23.22

0.06 0.07 1.76 2.02 2.55 5.04 0.09 0.08 2.84 0.08

0.058 −0.059 0.291 0.327 −0.353 0.494 0.063 −0.064 −0.375a 0.063

.805 .790 .188 .159 .114 .027 .771 .774 .096 .775

Note. For changes in study outcomes the scores were calculated by subtracting the baseline from the 3-month scores. Pooled SDs were calculated by taking the mean SD for B and 3 months. The F ratio is for the interaction effect from a 2 × 2 ANOVA crossing group with time. ES were calculated by subtracting the intervention change score from the control change score, then dividing this amount by the pooled SD. p values are associated with the corresponding F ratio. CES-D = Center for Epidemiological Studies Depression Scale; KAT = Knowledge of Alzheimer’s Test; MM-CGI = Marwit-Meuser Caregiver Grief Inventory. aThe ES for KAT scores indicate greater knowledge acquisition for the intervention group even though the sign is negative. For all other ESs a positive sign indicates greater improvement in the intervention group.

Table 4. Mean Changes in Study Outcomes From Baseline to 6 Months.

Variables Conflict with staff Captivity Guilt Loss Personal sacrifice burden Heartfelt sadness & Longing Worry & Felt isolation Depression KAT MM-CGI

Control (n = 49)


M ± SD

M ± SD

F ratio (1, .81)

ES

p

1.04 ± 6.69 −0.39 ± 6.93 0.67 ± 4.49 0.86 ± 6.96 −2.12 ± 7.65 0.84 ± 7.34 −0.43 ± 7.19 −0.16 ± 8.35 0.69 ± 2.05 −1.71 ± 17.95

1.50 ± 7.08 0.04 ± 8.31 −1.65 ± 4.95 −1.09 ± 6.22 0.29 ± 9.94 −2.21 ± 8.73 −1.32 ± 6.70 −1.09 ± 7.20 0.88 ± 2.11 −3.24 ± 21.27

0.09 0.07 4.93 1.71 1.56 2.95 0.33 0.28 0.17 0.12

−0.067 −0.056 0.492 0.296 −0.274 0.380 0.128 0.120 −0.091a 0.078

.765 .798 .029 .195 .215 .090 .568 .601 .680 .726

Note. For changes in study outcomes, the scores were calculated by subtracting the baseline from the 3-month scores. Pooled SDs were calculated by taking the mean SD for B and 3 months. The F ratio is for the interaction effect from a 2 × 2 ANOVA crossing group with time. ESs were calculated by subtracting the intervention change score from the control change score, then dividing this amount by the pooled SD. p values are associated with the corresponding F ratio. CES-D = Center for Epidemiological Studies Depression Scale; MM-CGI = Marwit-Meuser Caregiver Grief Inventory. aThe ES for KAT (Knowledge of Alzheimer’s Test) scores indicates greater knowledge acquisition for the intervention group even though the sign is negative. For all other ESs a positive sign indicates greater improvement in the intervention group.


22


research. By teaming up with community outreach staff from a federally funded Alzheimer’s Disease Center and by recognizing and respecting the facilities’ culture (Maas et al., 2002), we were able to discuss the study with staff and administrators and address any questions in a few predominantly African American facilities. As a consequence, we were able to build successful partnerships and recruit for both intervention and control conditions from these facilities. Community-based recruitment approaches and the use of educators especially in non-White communities have been successful in a number of studies and promise to bridge the trust gaps created by a history of unethical research practices still vivid, especially, in older adults’ memory (Etkin, Farran, Barnes, & Shah, 2012). This partnership was strengthened by an ongoing collaboration during and after the intervention was implemented. As Maas and colleagues (2002) emphasized, we conceived of “giving back” to the facility by sharing results and making presentations to staff and families on topics of interest as a long-term investment for future projects. A valuable lesson learned in this feasibility study was that recruitment in long-term facilities takes longer than anticipated and it is based on building trust and respect across communities, especially in non-White facilities. At baseline, the overall levels of chronic grief were not significantly different between groups. However, caregivers in the intervention group differed significantly from their counterparts in the control group on two key components of grief; they experienced a higher sense of loss of relationship with their family member placed in long-term care and higher levels of heartfelt sadness and longing. This difference is noteworthy, as we found that the intervention group sustained significant improvement in these two discrete aspects of grief in addition to a few others. Although our intervention did not significantly improve caregivers’ overall chronic grief, we found that it did have significant effects in the intervention group on components of grief such as heartfelt sadness and longing, at 3 months and guilt, at 6 months. The promising effect sizes in the intervention group’s heartfelt sadness and longing, loss of relationship, and guilt at 3 months were sustained at 6 months. These findings are unique in that no other study reported similar results with caregivers who placed family members with ADRD in long-term care. In their study with community-based caregivers, Ott et al. (2010) found an overall reduction in CG chronic grief measured with a short form of the same instrument we used, the MM-CGI (Marwit & Meuser, 2002). Their report however does not include a break-down of the results by the MM-CGI’s three subscales that capture discrete aspects of grief such as heartfelt sadness and longing, worry and felt isolation, and personal


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Paun et al.

sacrifice burden. In addition, Ott et al. did not measure guilt and loss of relationship in their participant caregivers. We measured guilt and loss of relationship using subscales of the FPCR, the same instrument used in the FIC study (Maas et al., 2004). The FIC focused on a formal partnership agreement between family caregivers and long-term care staff, and had a significant effect on caregivers’ sense of loss of relationship but did not yield an effect on caregivers’ guilt. The long-lasting effect that the CGMI had on caregivers’ guilt can be explained by our specific focus on processing loss and grief in the context of long-term care placement. This finding is supported by recent evidence acknowledging caregivers’ experience of guilt about placing their family members in long-term care (Hennings, Froggatt, & Payne, 2013). The fact that guilt continued to decrease in the intervention group is clinically significant because as a grief component, guilt may interfere with caregivers’ decision-making process and may affect their interactions with long-term care facility personnel (Maas et al., 2004; Specht et al., 2000). We did not find significant effects in depression levels in our sample. Compared with caregivers who placed their spouses in the Ott et al. (2010) study, our caregivers’ depression levels did not increase but were maintained at a plateau at follow-ups. This finding could be explained by the fact that two thirds of our sample presented at baseline with average scores below “significant” depressive symptoms. Similar to previous studies (Bramble et al., 2011; Maas et al., 2004; McCallion et al., 1999; Pillemer et al., 2003; Robinson et al., 2007), we also found that caregiver knowledge about end-stage ADRD and long-term care increased. In addition, we expected that increased knowledge coupled with decreased guilt would mediate a decrease in caregiver conflict with facility staff. However, we found that increased caregiver knowledge alone does not guarantee reduction in conflict with staff. One reason may be due to the fact that in our study, the intervention did not call for staff direct involvement or a formal contract between caregivers and staff as described by Maas and colleagues (2004). Our findings are limited by a relatively small sample (N = 83), representing a majority of suburban, Caucasian, female, adult-child caregivers. We did not consider other aspects of caregiver mental health status such as anger, anxiety, or positive affect and our follow-up was limited to 6 months post baseline. The CGMI should be further tested in a randomized clinical trial with a larger, racially diverse sample drawing from urban, rural, and suburban facilities. Follow-up beyond 6 months may be necessary to ascertain the long-term effects of CGMI, possibly beyond care recipients’ passing.


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In addition, we think that baseline differences between the intervention and control groups in CG heartfelt sadness and longing and loss of relationship may be attributable to caregiver self-selection. Caregivers with higher levels of these grief components may have been more prone to join the study and remain in the intervention. Furthermore, it is possible that these differences generated apparent clinical effects, when in fact they may have been regression to the mean. Thus, in future studies we recommend matching participants on all grief components during randomization. Expanding the assessment to include measures of facility staff attitudes toward family caregivers of residents with AD, communication and job satisfaction will add a missing dimension of how the intervention may impact the professional caregivers. A cost analysis to measure the effectiveness of the intervention is necessary for further consideration of translating it into clinical practice. Acknowledgments We acknowledge caregiver participants and the long-term facilities that assisted with the recruitment. We appreciate Janie Urbanic for her overall contribution as study coordinator; Karen L. Graham, Susan Frick, and Mary Futrell for their support in our recruitment efforts; and Edith Ocampo for her assistance with the tables.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: R21 NR010577 National Institute of Nursing Research.

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