Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

Chronic Grief Management: A Live-Streaming Video, Group-Based Intervention for Family Caregivers of Individuals With Dementia in Long-Term Care

Olimpia Paun, PhD, PMHCNS-BC, FGSA; Fawn Cothran, PhD, GCNS-BC


Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 17–24.]


Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 17–24.]

In the United States, approximately 5.5 million individuals are currently living with Alzheimer's disease and related dementias (ADRD), which are incurable, progressive, degenerative diseases of the brain (Alzheimer's Association, 2017). In the early stages of cognitive decline, most ADRD family caregiving occurs in the home. As the disease progresses, approximately 75% of individuals with ADRD are placed in long-term care (LTC) facilities by their families (Alzheimer's Association, 2017). ADRD family caregiving comes with a high price for caregivers' physical and mental health as caregivers provide in-home care and even after they transition their family member to LTC. Post-placement evidence indicates that caregivers experience feelings of loss and guilt that exacerbate their chronic grief, depression, and anxiety, and place them at risk for suicide (Chan, Livingston, Jones, & Sampson, 2013; Gilhooly et al., 2016; O'Dwyer, Moyle, Zimmer-Gembeck, & De Leo, 2013).

Post-Placement Interventions with ADRD Family Caregivers

Few randomized controlled trials (RCTs) have tested interventions designed for ADRD caregivers after they placed family members in LTC. Some interventions focused exclusively on caregivers' communication and conflict-resolution skills and were effective in: (a) improving communication; (b) fostering care partnerships between ADRD family caregivers and LTC facility staff; (c) decreasing conflict between family caregivers and LTC facility staff; and (d) increasing caregivers' satisfaction with resident care (Maas et al., 2004; McCallion, Tose-land, & Freeman, 1999; Pillemer et al., 2003; Robison et al., 2007).

More recently, three other interventions were designed to assist ADRD caregivers' adaptation to transitioning their family members to LTC, which had mixed results. An individual, telephone-delivered intervention significantly reduced caregivers' guilt about placement, but did not reduce their depression and burden levels (Davis, Tremont, Bishop, & Fortinsky, 2011). A pilot study tested a psychosocial intervention delivered as six individual residential care transition modules over a period of 4 months with significant decrease in caregiver emotional distress (Gaugler, Reese, & Sauld, 2015). Finally, a psychosocial intervention that included end-of-life care planning tested in a longitudinal RCT found no significant treatment effects in caregiver depressive symptoms, anxiety, and burden, but found that complicated grief scores were significantly lower in caregivers who received the intervention and subsequently lost their family members with ADRD (Schulz et al., 2014). This finding by Schulz et al. (2014) is intriguing because it raises the question as to whether ADRD caregivers experience other emotional reactions, such as grief, after placing their family member in LTC that could be effectively targeted in further interventions.

ADRD Caregiver Chronic Grief

A growing body of literature has examined caregiver chronic grief as a defining aspect of the dementia caregiving experience that contributes to caregiver depression and anxiety (Chan et al., 2013). In general, grief is considered a normal reaction to loss (i.e., loss of a loved one, relationship, role, or status). However, in ADRD caregiving, grief often becomes chronic because multiple losses accumulate over several years of caring for a family member with ADRD (Boss, 2011). Grief intensity reaches high levels in the last 2 years of caregiving, when most individuals with ADRD are placed in LTC facilities. Givens, Prigerson, Kiely, Shaffer, and Mitchell (2011) found that ADRD caregivers with high grief prior to care recipients' deaths had even higher levels of grief 7 months after family members' deaths. This finding is significant as it emphasizes the need to address ADRD caregivers' chronic grief prior to family members' deaths, thus preventing further worsening of mental health outcomes.

Chronic Grief Management Intervention for ADRD Caregivers Post-Placement

The first author (O.P.) previously designed a Chronic Grief Management Intervention (CGMI) to improve family caregivers' knowledge of end-stage ADRD, communication and conflict resolution skills, and grief management skills based on an adapted model that places chronic grief at the center of the ADRD family caregiver post-placement experience (Paun & Farran, 2011). The CGMI was tested for feasibility and preliminary effects in a pre-/multiple posttest, quasi-experimental pilot study with a no treatment comparison group (Paun et al., 2015). The CGMI comprised 12 weekly, in-person, group-based sessions. Researchers conducted the intervention with eight professionally moderated groups in five different facilities located in a large metropolitan Midwestern area. A total of 83 caregivers who completed the study received either the CGMI (n = 34) or two minimal-attention telephone calls (n = 49) over 6 months.

Researchers found the intervention to be feasible for recruitment, retention (89%), and delivery, with an average attendance of 10.44 of 12 sessions (SD = 1.5 sessions, range = 5 to 12). CGMI was effective in reducing ADRD caregivers' sense of guilt, loss, and sadness/longing at 3 months (i.e., immediately post-intervention), with a significant reduction in sense of guilt sustained at 6-month follow up (Paun et al., 2015). Although CGMI was effective in several ADRD caregiver mental health outcomes, in post-intervention surveys, caregivers indicated that they preferred fewer sessions due to burden of time. In addition, key staff informants (i.e., directors of nursing, unit managers) at LTC facilities reported back to recruiters that some caregivers expressed interest in the intervention but were constrained due to distance of travel to attend weekly meetings at the facilities. Issues of time, distance, and travel constraints prompted researchers to review the evidence on online interventions to support ADRD caregivers and consider adapting the CGMI to an online delivery format.

Online Interventions for ADRD Caregivers

A systematic review of 12 online interventions for ADRD family caregivers (Boots, de Vugt, van Knippenberg, Kempen, & Verhey, 2014) found that all interventions addressed preplacement issues, and most (n = 9) targeted caregiver knowledge and/or behavior management skills using self-taught online modules. Four interventions facilitated occasional, informal online interaction among caregivers, and three provided professional support (Boots et al., 2014). Overall, most online interventions reviewed were successful in improving caregiver knowledge, self-efficacy, and self-confidence, but few found significant changes in symptoms of depression or anxiety (Boots et al., 2014). Additional concerns were small sample sizes and low retention rates across studies. The only study with a reported zero dropout rate and significantly greater improvement in caregiver mental health outcomes used a professionally led, live-streaming video online group intervention (Marziali & Garcia, 2011).

Current Study

For the Chronic Grief Management—A Live-Streaming, Online Intervention (CGMI-V), researchers adapted the 12 sessions of the original CGMI (Paun & Farran, 2011) to eight sessions by consolidating the content of three intervention core areas: knowledge, communication/conflict resolution skills, and grief management skills. Consolidation was in response to feedback received from a participant satisfaction survey at the end of the parent study (CGMI) that indicated need for a shorter intervention. The CGMI-V follows a standardized intervention manual and comprises approximately 60-minute sessions delivered weekly for 8 consecutive weeks. Sessions 1 and 2 addressed caregiver knowledge about end-stage ADRD and resources available to family caregivers in the LTC facility and community at large. Sessions 3 and 4 addressed caregiver skills in communication and conflict resolution and hands-on care in the context of LTC. Sessions 5 to 8 addressed caregiver grief management skills using discussion guides tailored to specific grief management topics (Ott, Kelber, & Blaylock, 2010; Worden, 2002). The participant manual outlines each session's content and includes questions to facilitate discussion. Additional materials published by the Alzheimer's Association and Family Caregiver Alliance are provided for select knowledge and skill topics. Table 1 outlines the intervention content by session.

Chronic Grief Management—A Live-Streaming, Online Intervention (CGMI-V) Sessions, Target Areas, Content, and Resources

Table 1:

Chronic Grief Management—A Live-Streaming, Online Intervention (CGMI-V) Sessions, Target Areas, Content, and Resources

The purposes of the current study were to: (a) determine the feasibility (i.e., recruitment, retention, attendance) of delivering the adapted 8-week CGMI-V using the Adobe® ConnectTM platform and iPad® technology, and (b) explore ADRD caregivers' group experience using online video-based technology.


Design, Setting, and Sample

The current study was a single-group pilot study (N = 5), with data collection at baseline (caregiver/care recipient demographics) and 8 weeks (caregiver brief survey and focus group). Researchers recruited a sample of five family caregivers from one suburban LTC facility specializing in care of individuals with ADRD. Researchers screened five interested participants by telephone and determined all were eligible. Inclusion/exclusion criteria were: the caregiver (a) was 21 years or older; (b) identified as a family member of the care recipient; (c) was able to speak, read, and write English; (d) was able to commit to the study time frame; (e) was able to use a digital tablet to receive the intervention; and (f) agreed to be videotaped for study purposes alone; and the care recipient (g) was officially diagnosed with ADRD. Caregivers signed informed consent forms and received the intervention manual at the baseline assessment, which took place in a location of their choosing (e.g., LTC facility or their home). Participants attended the group sessions from remote locations (i.e., their home, other states due to travel) and met the interventionist (i.e., principal investigator [PI]; O.P.) in person in a private conference room for the focus group held at the LTC facility.


The study was approved by the Institutional Review Board of the parent institution. Prior to intervention implementation, each caregiver received a participant manual (developed by O.P.), a study-provided iPad, microphone equipped headsets, and a unique password-protected link to an institutionally licensed Adobe Connect CGMI-V site. A study technology assistant provided each caregiver with individual orientation in use of the software and equipment, including step-by-step written information. Emphasis was placed on using the iPad only for study purposes and not allowing others to access the password protecting the CGMI-V sessions' link. Participants were reminded to have devices fully charged prior to each session and wear the provided headsets with microphones.

An introductory online group session preceded the intervention implementation to allow caregivers to meet each other, practice using the technology, and ask questions about the intervention manual. The technology assistant was present either in-person or remotely at each session to resolve any unexpected technology issues, thus ensuring a smooth intervention delivery. The interventionist (O.P.), who is familiar with ADRD caregivers' mental health needs and has experience leading therapeutic groups, delivered the CGMI-V over eight, approximately 60-minute long, real-time, online weekly video sessions.

Researchers used a standard demographic questionnaire to collect baseline data for caregivers and care recipients. Post-intervention, researchers used a follow-up five-item survey asking caregivers to rate how much they learned about end-stage ADRD, communication/conflict resolution skills, and loss and grief management on a scale from 0 (not at all) to 4 (very much). In addition, at the end of the program, the PI conducted an approximately 1-hour long focus group to: (a) assess caregivers' experience with the technology (i.e., ease of use, technical problems, orientation to the online platform and iPad devices), and (b) explore caregivers' experience with the online synchronous video format (i.e., ability to relate to each other emotionally, group's effect on emotional outcomes). The taped focus group session was transcribed and content analysis was used to extract major themes (Patton, 2015).



The one male and four female caregivers were all non-Latino White individuals, as were their care recipients. Caregiver ages ranged from 45 to 65 years (n = 2), 66 to 75 years (n = 2); and >75 years (n = 1). Three were adult children of the care recipients, one was a spouse, and one was a niece. All caregivers were married. There were three female and two male care recipients, and their ages ranged from 66 to 75 years (n = 1) and >75 years (n = 4). Two care recipients were married and three were widowed. Two care recipients were in the facility >1 year, and three others were there >6 months.


All five ADRD family caregivers were recruited from the same Midwestern suburban facility. They promptly responded to a notice placed in the facility's newsletter. A sixth caregiver expressed interest at a later date, when the intervention was already midway through; thus, researchers could not enroll the individual. Retention rate was 100%, with all caregivers attending five or more intervention sessions and three caregivers attending all eight sessions. Three caregivers were able to attend sessions when they were traveling away from home.

Intervention delivery was smooth overall, with careful planning and support from the technology assistant. All participants received headsets with microphones and fine-tuned the iPad and microphone volume levels at the beginning of each session to avoid echo. For caregivers traveling away from home, researchers provided hot spots (i.e., internet access available via the iPads that is not limited by location), although the hotspots were sometimes inconsistent, creating occasional frozen images. On those rare occasions, caregivers were able to continue participating despite poor visual reception.

Ratings on the post-intervention survey ranged from 3.2 (SD = 0.84) for learning new information to 3.6 (SD = 0.55) for help managing loss and grief associated with placement. Survey scores ranged from 0 (not at all) to 4 (very much), with higher scores indicating higher agreement. Full survey results are shown in Table 2.

Post-Intervention Alzheimer's Disease and Related Dementias (ADRD) Caregiver Surveya

Table 2:

Post-Intervention Alzheimer's Disease and Related Dementias (ADRD) Caregiver Survey

Caregivers' Experience With Technology

Post-intervention, all five caregivers attended a focus group conducted by the interventionist. The session was audiotaped with participants' consent and then transcribed. The PI used content analysis to extract key terms and significant sentences from the transcript, and grouped them into major themes and subthemes (Patton, 2015). The coinvestigator (F.C.) independently reviewed the major themes and subthemes for accuracy with minor edits or suggestions. Content analysis revealed five major themes: (a) Navigable Technology, (b) Technology Challenges, (c) Facilitators of Group Process, (d) Emotional Connection, and (e) Group's Effect on Emotional Outcomes.

Navigable Technology. Overall, all participant caregivers reported no major problems with navigating Adobe Connect and the iPad technology. One caregiver stated: “Once I was connected, it was mindless….” Caregivers found that the written instructions, individualized orientation, and ongoing support offered by the technology assistant contributed to their ability to handle the technology: “He [the technology assistant] had us also practice, had us do it, so that was very helpful.” Caregivers were all appreciative of the online introductory session during which they had a chance to meet other participants and practice using the technology. Some participants emphasized the flexibility afforded by use of technology, as they could join CGMI-V sessions while traveling on vacation with their grandchildren or visiting out-of-state family.

Technology Challenges. Fine-tuning the volume and microphone levels at the beginning of each session to prevent echo was perceived as a moderate challenge. Some caregivers became proficient in adjusting the volume and microphone levels; however, others required continuous guidance from the technology assistant. As one caregiver stated, “My problem was the mic[rophone] tuning; that was a big annoyance…all of a sudden, the echo starts all over.” One participant wearing a hearing aid encountered additional challenges, as she had to replace it with the headset for the duration of each session.

Taking turns speaking was another moderate challenge that participants navigated easily. Initially, they used the “raised hand” feature in Adobe Connect, but soon realized that they could physically raise their hands when ready to speak. The interventionist kept close track of those announcing their intent to participate in the discussion and she in turn raised her hand when asking questions. Frozen images occasionally became a problem when caregivers were traveling. As one participant noted: “I could see everybody, but they were not moving.” However, caregivers were able to continue the session without interruption using the audio function.

A concern brought up in the focus group was maintaining confidentiality. However, access to the Adobe Connect platform and iPads was secured with individual passwords, thus minimizing the possibility of a confidentiality breach. Group members agreed that the system seemed secure, stating: “I thought it was pretty secure and safe with the two passwords and my own name” and “I never felt an issue with confidentiality.”

Facilitators of Group Process. Participants indicated that the group size of five participants was ideal for the online group interaction and thought that a larger group would have made it more difficult to relate to one another. The initial face-to-face meeting the group moderator (PI) had with each individual participant was also perceived as a group process facilitator, as one participant stated: “I also think that [in-person meeting] created a connection to you [PI]”.

Emotional Connection. All caregivers agreed that the online environment did not interfere with their ability to relate to one another emotionally, especially because they could see each other via live-streaming video. During the few instances in which a caregiver became tearful, the rest of the group expressed empathy and used words of encouragement. One caregiver confessed:

To be honest with you, there was no difference [between online and live groups]. I have been in several types of face-to-face caregiver support groups; I did not perceive any difference in the ability to relate to each other.

Group's Effect on Emotional Outcomes. Caregivers acknowledged that the live-streaming, group-based intervention helped them feel less alone in their caregiving experience—“We are all in this together”—and also made them feel less guilty about having placed their family members in LTC. One group member eloquently summarized the group's feelings, stating: “I want to applaud all of us for being so open and going through this experience together.”


Similar to the CGMI-V, other studies adapted in-person interventions with dementia family caregivers for online delivery but used psycho-educational modules that caregivers completed on their own (Blom, Zarit, Groot Zwaaftink, Cuijpers, & Pot, 2015; Kajiyama et al., 2013), or a combination of synchronous (tele-conference) and asynchronous video modules (Griffiths, Whitney, Kovaleva, & Hepburn, 2016; Kovaleva, Blevins, Griffiths, & Hepburn, 2017). One study that used an exclusively synchronous online intervention (Marziali & Garcia, 2011) compared an audio chat group with a professionally led video conferencing support group for community-based dementia caregivers. Similar to caregivers in the current study, caregivers in the video conferencing support group navigated technological challenges with help from study technicians and appreciated the ability to attend synchronous group sessions from the comfort of their homes (Marziali & Garcia, 2011).

Consistent with findings in the parent CGMI study (Paun et al., 2015), caregivers in the current pilot study reported in the focus group session that the intervention helped decrease their sense of guilt and isolation. One participant stated: “I feel less guilty now for taking my aunt and uncle out of their home [to place them in LTC].” This report of decreased guilt and isolation was further supported by post-intervention survey results: the highest agreement rate among participants was that the group discussions helped them process their loss and grief associated with LTC placement (3.6 [SD = 0.55] of 4). A decrease in guilt about placement was also noted by Davis et al. (2011) following an individually delivered telephone intervention with dementia family caregivers. Guilt can severely impact caregivers' chronic grief, which in turn may impact their relationship with the LTC staff and administrators taking care of their family member.


The current pilot study used a small sample (N = 5) to test the feasibility of delivering the intervention using an online platform and iPad technology. Although specific questions related to caregivers' mental health outcomes were addressed in the post-intervention focus group, there was no objective measurement of caregiver grief and other mental health outcomes, such as depressive symptoms and anxiety. Researchers used a homogeneous, suburban, middle class sample that had access to internet services that may not be as readily available to ADRD caregivers in underserved urban or rural areas.

Clinical Implications

The current study brings to the forefront ADRD caregivers' chronic grief experienced in the process of LTC placement and offers a feasible alternative to an in-person intervention. Clinicians in LTC settings can be trained in the use of the CGMI-V manual and technology. ADRD family caregivers who agree to participate in this intervention will benefit from the support offered by the intervention itself and their peers.


To the researchers' knowledge, no other post-placement intervention was delivered using an online platform with iPads, and no post-placement intervention specifically targeted family caregivers' chronic grief. As an intervention found feasible for group-based, professionally led, online delivery, CGMI-V has the potential to significantly impact ADRD family caregivers' chronic grief and other mental health outcomes.


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Chronic Grief Management—A Live-Streaming, Online Intervention (CGMI-V) Sessions, Target Areas, Content, and Resources

Session/Week NumberSession TitleTarget AreasContentResources
1Getting StartedKnowledgeAddress ADRD late and end-st age changes (i.e., physical, cognitive, behavioral, emotional).Alzheimer's Disease and Related Dementias Fact Sheets (access and
2What Do You Know About This Place and the Community?KnowledgeDiscuss LTC facility philosophy of care, structure, regulations, policies, and personnel roles. Provide resources for the caregiver and care recipient post placement in the facility and community at large.Hospice care information for individuals with Alzheimer's disease (access
3How Do I Get My Message Through?Communication/conflict resolution skillsPractice conflict resolution techniques with LTC facility staff, care recipient, and other residents and their family members.Communication (Alzheimer's Association) (access
4Doing for and Working With My Loved OneHands-on care skillsDiscuss hands-on care for care recipients and participation in LTC facility activities.Resources and Information Kit—Caregiver Tips (access
5Losses and SeparationGrief management skillsRecognize losses and process reaction to separation.Discussion guide in participant manuala
6What Defined Our Relationship?Grief management skillsRecollect and re-experience the relationship with the care recipient.Discussion guide in participant manuala
7How Do I Let Go and Readjust?Grief management skillsProcess relinquishing old attachments and assumptions; process readjusting to the new without forgetting the old.Discussion guide in participant manuala
8Life Goes OnGrief management skillsDiscuss reinvesting in new attachments and goals; process group closure.Discussion guide in participant manuala

Post-Intervention Alzheimer's Disease and Related Dementias (ADRD) Caregiver Surveya

Survey QuestionAgreement Rate Mean (SD)
Did you learn new information about ADRD through this program?3.2 (0.84)
Did you learn new ways to communicate with your family member, staff, and others through this program?3.2 (0.84)
Did group discussions help you learn the things you most needed to know?3.4 (0.89)
Did group discussions help your feelings of loss and grief associated with placement of your family member in long-term care?3.6 (0.55)
Are you currently using any of the skills (i.e., conflict resolution, grief management) discussed in the group sessions?3.4 (0.89)

Dr. Paun is Associate Professor, Rush University College of Nursing, Chicago, Illinois, and Dr. Cothran is Assistant Professor, University of California–Davis, Betty Irene Moore School of Nursing, Sacramento, California.

The authors have disclosed no potential conflicts of interest, financial or otherwise. The study was supported by a grant from the Rush University College of Nursing Research Resource Fund. The authors are grateful for the technological support from Peter Tubbs and Mohmadamir (Amir) Tai. They also thank the caregivers who participated in the study and Patricia Terkovich for her recruitment effort.

Address correspondence to Olimpia Paun, PhD, PMHCNS-BC, FGSA, Associate Professor, Rush University College of Nursing, 600 S. Paulina Street, No. 1080, Chicago, IL 60612; e-mail:

Received: April 04, 2018
Accepted: May 02, 2018
Posted Online: June 20, 2018


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