Dementia caregiver virtual support−An implementation evaluation of two pragmatic models during COVID-19

Study Aim/Purpose:  This article describes the design and implementation of two support programs in Tennessee that began providing online sessions for caregivers of persons with Alzheimer’s and related dementias (ADRD) during the COVID-19 pandemic. The first was the Caregivers First program, which served caregivers of veterans, and the second was the Alzheimer’s Tennessee program, which is open to caregivers statewide. These programs had pivoted from traditional in-person support groups to virtual care platforms during the pandemic. The research aim was to determine the lessons learned that could be applied in the future to enhance the delivery of virtual support services for ADRD caregivers.

Summary of Methods:  To describe program design, participation, and outputs, the authors used extant administrative information collected and compiled by the programs. Implementation measures collected included participation and time costs and savings. To assess program strengths and weaknesses and estimate time costs and savings, the authors also conducted semi-structured interviews with facilitators. To determine time saved by the caregivers and tine cost for the facilitators, the authors documented facilitators’ reports of how much time it took to implement the sessions. The open-ended responses from these interviews were coded and analyzed to identify themes for a narrative summary. In addition, for the Caregivers First program, participant workbook questionnaires and a post-series mail survey collected demographic data, caregivers’ pre and post self-assessments of burden (using the 4-item Zarit Burden Interview scale) and depression (using the PHQ-2 depression questionnaire), satisfaction with the program, and implementation barriers or issues they may have faced.

Summary of Key Results:  

Implementation design and outputs   

The Caregivers First program, targeted to caregivers of veterans, provided four separate classes consisting of four weekly sessions reaching a total of 28 participants. Participation in each of the sessions was low, ranging from two to six per session. The mode of class delivery was primarily interactive online sessions. Most participants (25 of 28) were caring for a veteran with an ADRD diagnosis; all caregivers but one were female, and the  large majority (86%) were the wives of the care recipients. With regard to savings and cost, the authors estimated that caregivers saved 8640 miles and 172 hours of drive time by attending virtual classes instead of travelling to the medical center. The time cost for facilitators was 2.5 hours per class, including not only class time, but also time to recruit participants, preparing for the class, completing documentation, and time to provide referrals or other post-class services to address identified needs.

While less implementation data was available for the Alzheimer’s Tennessee program, reach data indicated that four online support groups were provided weekly, with an average of 15 participants statewide per session. The organization also hosted nine monthly educational webinars in each region of the state during this period on topics selected by the caregivers. Program data indicated that 20 percent of participants in the sessions received referrals to their local Alzheimer’s Tennessee chapter.

Strengths and limitations   

Strengths: While implementation differed across the two programs, facilitators and caregivers praised the knowledge and skills of the individuals involved in the program. They also felt that the caring human connection persisted during the virtual sessions despite their concerns with and difficulties using the online platforms. Facilitators reported that during the pandemic, support group attendance waned when they made the shift from in-person sessions to audio conference calls, but attendance increased rapidly once they started to use video conferencing. In Caregivers First, both respondent groups said they valued the connectedness and support they felt and appreciated the structured progression of topics and content materials and facilitator training provided.

Limitations:  Facilitators from Caregivers First indicated that the group attendance was low and weekly classes were too frequent for caregivers who have high demands on their time at home. Facilitators from Alzheimer’s Tennessee felt that the virtual format limited their ability to notice caregivers’ non-verbal cues, which they described as an important aspect of communication in support groups. These facilitators expressed a preference in the future for a hybrid model of in-person and virtual support. They also acknowledged that with more experience, the online programming could provide desired outcomes for caregivers such as individualized referrals and other follow-up services.

Study Limitations (as cited by authors):  The authors note that the limited number of participants and response rates for the Caregivers First participant survey precluded their ability to conduct any statistical analyses. They also acknowledged the limitation of the information on the Alzheimer’s program, for which they could not collect any information from caregivers including the frequency of their participation in the sessions offered, or caregiver and care recipient characteristics, or follow-up on referrals provided.

Authors’ Discussion/Conclusions:  The authors recommend that some elements of virtual support can be extended to caregiver support services beyond the COVID-19 pandemic. They point out that this newly implemented modality for caregiver support has the ability to expand the reach of support for caregivers and provide safe care during a pandemic. At the same time, they recommend that due to varied preferences and needs of caregivers, organizations providing support services should partner with other local organizations to ensure that different types of programming are available and that caregivers can choose among them to meet their individual needs.