Dementia Caregiver Chronic Grief Management: A Live Online Video Intervention

Evidence indicates that 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. They do not relinquish their role after placing a family member with Alzheimer's
disease or a related dementia (ADRD) in long-term care. In fact, these caregivers experience
increased symptoms of depression, symptoms of anxiety, and chronic grief post-placement. In
the long-term care (LTC) environment, caregivers' chronic grief is exacerbated by their lack
of knowledge about late-stage Alzheimer's disease or a related dementia (ADRD) and their
sense of loss, guilt, and role captivity. Interventions targeting improvement of ADRD
caregivers' mental health have focused overwhelmingly on in-home care. We tested a Chronic
Grief Management Intervention (CGMI) with ADRD caregivers in in long-term care and found it
feasible (recruitment, retention, and attendance). The Chronic Grief Management Intervention
(CGMI) had significant effects on caregiver knowledge and mental health outcomes (heartfelt
sadness/longing and guilt; aspects of chronic grief). Although caregivers reported high
satisfaction with this intervention, many could not attend the 12 face-to-face group sessions
due to the burden of time and competing responsibilities. Therefore, we reduced the number of
sessions to 8 and adapted the Chronic Grief Management Intervention to be delivered as a live
streaming video, online group intervention; Chronic Grief Management Intervention-Video
(CGMI-V), using Adobe Connect (online platform) and iPads. We tested CGMI-V in a single group
pilot study for feasibility (recruitment, retention, attendance and technology ease of use)
with Alzheimer's disease or a related dementia (ADRD) caregivers post-placement. We obtained
100% retention with high caregiver satisfaction with the intervention and the online
technology used to deliver it. Our proposed study, Chronic Grief Management: A Live Streaming
Video, Online Intervention (CGMI-V) 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); a
secondary mental health outcome (symptoms of depression, symptoms of anxiety, and positive
states of mind) and a secondary facility-related outcome (caregiver satisfaction with care
and conflict with facility staff) related to a minimal treatment (MT) control group. We
propose to test the group-based Chronic Grief Management Intervention-Video (CGMI-V) in a
Stage I longitudinal, randomized clinical trial. 144 Alzheimer's disease or a related
dementia (ADRD) caregivers whose family members reside in one of the participating long-term
care facilities will be randomly assigned to either CGMI-V or MT condition. Caregivers in the
Chronic Grief Management Intervention-Video (CGMI-V) condition will participate in 8 weekly
live streaming video, online group sessions. Caregivers in the minimal treatment (MT)
condition will receive written information about late-stage ADRD at baseline. For both
conditions, data will be collected at baseline, 8 weeks (immediately post-intervention) and
then at 24 weeks post-baseline, using measures of caregiver grief: Marwit-Meuser Caregiver
Grief Inventory(MM-CGI); depressive symptoms: Center for Epidemiological Studies Depression
Scale (CES-D); anxiety symptoms: Stait-Trait Anxiety Inventory (STAI); positive states of
mind: Positive States of Mind Scale (POSMS); satisfaction with care: Family Perception of
Care Tool (FPCT); conflict with facility staff: Family Perception of Caregiving Role (FPCR
subscale), knowledge of Alzheimer's disease: Family Knowledge of Alzheimer's Test (FKAT),
loss, guilt and role captivity (FPCR subscales). Specific aims are to: 1) Establish effect
sizes of the Chronic Grief Management Intervention-Video (CGMI-V) condition and Minimal
Treatment (MT) control condition on changes in caregiver chronic grief. 2) Establish effect
sizes of the CGMI-V and Minimal Treatment (MT) control condition on changes in caregiver
symptoms of depression and anxiety and on positive states of mind. 3) Establish effect sizes
of the CGMI-V condition and the Minimal Treatment (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 modality that will be adopted in long-term care
facilities as part of routine support for Alzheimer's disease or a related dementia
caregivers post-placement. This in turn will impact public mental health for this growing
segment of the population.

Inclusion Criteria:

- 21 years of age or older

- Identified as family member, fictive kin (self-identified family member), or partner
of care recipient

- Within the first year of care recipient's permanent placement in a long-term care
facility

- Care recipient is a resident in a dementia or memory care unit in the LTC facility,
where a diagnosis of ADRD is mandatory

- Possessing self-reported basic computer literacy and in-home internet access

- Able to speak, read, and write English

- Not currently attending another ADRD caregiver grief management group

- Experiencing high to moderate levels of grief per screening with the Marwit-Meuser
Caregiver Grief Inventory-Short Form (MMCGI-SF) (70 and above); and/or

- Experiencing high levels of depressive symptoms per screening with Patient Health
Questionnaire-9 (PHQ-9) (scores 10 and above)

Exclusion Criteria:

- Non English speaker, reader, writer

- Scoring under the cut off points on the MM-CGI-SF and the PHQ-9

- Reporting no basic computer literacy; no internet access

- Care recipient resided longer than one year in the long-term care facility