Olimpia Paun – Principle Investigator, Rush University College of Nursing
Sarah Ailey – Co-Investigator, Rush University College of Nursing
Carol Farran – Co-Investigator, Rush University College of Nursing
Lou Fogg – Co-Investigator, Rush University College of Nursing
Ben Inventor – Co-Investigator, Rush University College of Nursing
Arlene Miller – Co-Investigator, Rush University College of Nursing
Alzheimer’s disease or a related dementia (ADRD) family caregivers suffer long-term mental and physical health effects that place them at risk for premature death and can affect them even after placing a family member with ADRD in long-term care (LTC). In fact, these caregivers experience increased symptoms of depression and anxiety, and chronic grief post-placement. In the LTC environment, caregivers’ chronic grief is exacerbated by their lack of knowledge about late-stage ADRD and their sense of loss, guilt, and role captivity. Interventions to improve of ADRD caregivers’ mental health have focused overwhelmingly on in-home care. We tested a Chronic Grief Management Intervention (CGMI) with ADRD caregivers in LTC and found it feasible (recruitment, retention, and attendance). The CGMI had significant effects on caregiver knowledge and mental health outcomes (sadness/longing and guilt; aspects of chronic grief). Although they reported high satisfaction with this intervention, caregivers found the 12 face-to-face group sessions time-consuming. Therefore, we reduced the number of sessions to 8 and adapted the CGMI to be delivered as a live streaming video, online group intervention (CGMI-V), using Adobe Connect and iPads. We tested CGMI-V in a single group feasibility pilot study (recruitment, retention, attendance and technology use) with ADRD caregivers post-placement. We had 100% retention with high caregiver satisfaction with the online delivery method. Our proposed study, Chronic Grief Management: A Live Streaming Video, Online Intervention builds on these results and is guided by a Model of Dementia Caregiver Chronic Grief in the Long-Term Care Setting. The purpose of this study is to test the effects of the 8-week CGMI-V on a caregiver primary outcome (chronic grief) and two secondary outcomes (mental health and facility-related outcomes), related to a minimal treatment (MT) control group. We propose to test the CGMI-V in a Stage I longitudinal, randomized clinical trial. 144 ADRD caregivers whose family members reside in LTC facilities will be randomly assigned to either the CGMI-V or MT condition. Caregivers in the CGMI-V condition will participate in 8 weekly online group sessions. Caregivers in the MT condition will receive written information about late-stage ADRD at baseline. For both conditions, data will be collected at baseline, 8 weeks, and then at 24 weeks post-baseline. Specific aims are to:
1) Establish effect sizes (ES) of the CGMI-V condition and MT control condition on changes in caregiver chronic grief.
2) Establish ES of the CGMI-V condition and MT control condition on changes in caregiver symptoms of depression and anxiety and on positive states of mind.
3) Establish ES of the CGMI-V condition and the MT control condition on changes in caregiver satisfaction with care provided in the facility and conflict with staff, and
4) Explore mechanisms of intervention impact on all caregiver outcomes.
Our long-term objective is to develop a chronic grief treatment that will be adopted in LTC facilities as part of routine support for ADRD caregivers. This in turn will impact public mental health for this growing segment of caregivers.