Feasibility of Telehealth Occupational Therapy for Behavioral Symptoms of Adults With Dementia: Randomized Controlled Trial

Method

Results

Of the 96 dyads who were assessed for eligibility, 30 agreed to participate (see CONSORT diagram in Figure 1). The dyad characteristics that were assessed included age, gender, education, race, and length of relationship (Table 2). Age of the person living with dementia (p = .014) and caregiver gender (p = .0029) varied among groups. The primary outcome demonstrates that the intervention is feasible, with high adherence to weekly visits (p = .061). Seven of 10 dyads in the HARMONY arm completed at least 75% of the telehealth sessions. Six of 10 dyads in the standard arm attended at least 75% of the telehealth sessions, and 2 of the 10 dyads in the control arm attended at least 75% of the telehealth sessions. Additionally, this feasibility trial identified several characteristics required for advancing the intervention toward larger clinical studies (Tickle-Degnen, 2013). Assessment of resources confirms utility of multi-disciplinary teams for recruitment of community-residing adults with dementia and their caregivers. However, internet access and comfort with the use of videoconferencing technology was noted as challenging for some participants. Assessment of management of this feasibility trial identifies the benefit of REDCap as a data collection tool that was used in a manner similar to that of electronic medical record point-of-service documentation. REDCap was also structured in this study to manage appointment dates and study progression for all participants. Furthermore, we noted that there were no adverse events related to the intervention. However, reports of falls, infection, and unrelated exacerbation of comorbid conditions were noted among 6 participants.

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Figure 1.

Consolidated Standards of Reporting Trials flow diagram.

Secondary outcomes included change in neuropsychiatric symptoms (severity and distress) and change in patient performance identified by care partners during functional daily activity (Table 3). Exploratory outcomes assessed change in caregiver satisfaction, change in caregiver burden, and change in cognition. Similarly, both secondary and exploratory outcomes identified the greatest improvement in the HARMONY protocol arm.

Discussion

The novel occupational therapy intervention described here incorporates elements of PEOP and sensory-based approaches to improve behavior and functional activity participation in older adults with ADRDs living in the community. Findings demonstrate feasibility of the intervention delivered by means of telehealth services with caregiver facilitation. Improvement in behavioral symptom severity and caregiver distress were observed that were consistent with the findings of prior studies that demonstrated the utility of occupational therapy in dementia care (Gitlin et al., 2018).

The COPM identified tasks with low performance by the person with AD. This allowed the interventionist to integrate an individualized, person-centered approach and tailor the intervention to the needs of the situation (Rhodus & Rowles, 2022). Delivery of the intervention was tailored through a lens of mediated learning using guided discovery principles (Overholser, 2013). This approach allowed care partners to self-identify environmental constructs to adapt and to increase their confidence. Interventions incorporated environmental features of the home, care partner training and facilitation of sensory stimulation, and a tailored focus on identified areas of occupation that were critical mechanisms for improving activity performance, consistent with the four tenets of the HARMONY program (Smallfield & Heckenlaible, 2017).

Care partners in this study expressed minimal concerns regarding the use of videoconferencing technology; however, troubleshooting was often required for initial sessions, which is similar to other studies (Gately et al., 2020). The literature suggests that caregivers of people with ADRDs have higher satisfaction and lower report of burden when adequately skilled in managing behaviors and engaging the person they care for in daily occupations (Baum, 1995; Lawton & Simon, 1968). Our exploratory outcomes are consistent with previous evidence. Care partners identified higher satisfaction specifically related to the targeted activity of intervention, they reported less burden, and they experienced less distress during behavioral symptoms. These findings, although exploratory, are important, because they demonstrate that the intervention did not increase burden—a concern when asking care partners to facilitate additional care tasks.

Occupational therapy has long recognized improved behavioral regulation after environmental and sensory-based interventions in people with autism spectrum disorder (ASD; Schoen et al., 2019). The intervention described here has parallels to pediatric sensory-based interventions (i.e., sensory diet) that are individualized and tailored to promote adaptive behavioral response. In this study, we applied similar mechanisms across the lifespan for older adults with ADRDs (Magnin, 2021). This may not be surprising, because recent evidence suggests similar behavioral sequelae between ASD, a neurodevelopmental disorder recognized in early childhood, and ADRDs, which are neurodegenerative conditions (Rhodus et al., 2020). Sensory-enriched environments within the home setting were associated with positive findings in this study. Implementation of this approach by means of telehealth increased outreach opportunities for broader implementation within rural and underserved environments (Gately et al., 2019; Possin et al., 2019). Evaluation and utilization of the home environment beyond historical approaches of safety and access have the potential to facilitate engagement tailored to functional cognition capacity (Baum et al., 2023). However, although this study combined several clinical assessments, the operationalization of individualized approach was complex. The development of assessments that consider a situational perspective (Rhodus & Rowles, 2022) by integrating PEOP and sensory approaches will dramatically advance the utility and clinical reproducibility of the intervention in real-world settings.

This study has limitations that should be noted. First, participant retention was much lower in the control arm compared with the HARMONY protocol arm, limiting data collection at postintervention and follow-up. This could indicate the need for the intervention, it could indicate lack of perceived benefit of participation of the control arm, or it could be due to differences in the arms related to the age and gender of the caregiver. In the HARMONY arm, the mean age for the person with dementia was 73 yr, compared with the mean ages 84 yr and 77 yr in the standardized and control arms, respectively. Older age may indicate more years of caregiving needs. The HARMONY arm caregivers were predominately male, whereas the standard and control arm caregivers were predominantly female. This may also influence retention, because female caregivers often have additional responsibilities for caring and home management in this generation of older adults. Future research could include occupational profiles of caregivers to better describe influential mechanisms involved in caregiving for this intervention. Furthermore, the dropout influenced sample size and power. However, use of the mITT approach with multiple imputations allowed for proper statistical analyses. The findings of this study will improve sample size calculations for future trials.

Second, limitations to use of technology were observed. Inclusion criteria required participants to have access to internet and videoconferencing, and this approach did deter some people from participation. Lack of devices, lack of internet access, or discomfort with use of the videoconferencing platform were reported during recruitment. Reliance on personal devices and internet also affected communication, which was particularly noted during cognitive assessments. The timed portion of the MoCA was challenging because of differences in internet speeds, which limited real-time processing. Utilization of telehealth with care partners caused some participants with AD to be disturbed. One care partner reported increased hallucinations in the person with AD immediately after the telehealth visits. Another person reported an inability to distract his loved one during the telehealth visits and dropped out of the study because of the time commitment without additional help to care for his loved one. These components were critical for improving and adapting the intervention for the next phase of efficacy trials. Considerations, such as sending headphones, will also be implemented to decrease disturbance for the person with AD during telehealth visits.

Finally, effects of the intervention on behavior and occupational performance were secondary and exploratory outcomes. Future trials with appropriate sample sizes will identify mechanisms of action specific to the HARMONY protocol and further the progress of the development, future implementation, and clinical utilization of this telehealth intervention program. We also note that occupational therapy delivered by means of telehealth was expanded in 2020 because of the coronavirus disease 2019 (COVID-19) pandemic and the increase in services by the Centers for Medicare and Medicaid Services under the public health emergency. At the time of publication of this article, telehealth occupational therapy services have yet to become a permanent service option. The findings of this clinical trial support the feasibility, utility, and benefits of telehealth services provided by occupational therapists for older adults living with dementia and their care providers.

Implications for Occupational Therapy Practice

The findings of this study have several implications for occupational therapy practice:

▪ Individualized sensory-based intervention is feasibly delivered through telehealth and has a positive effect on performance and behavioral symptoms of people with AD.

Conclusions

The HARMONY occupational therapy intervention is feasible when applied through telehealth for community- residing older adults living with AD. Additional studies should be appropriately powered to explore the effectiveness of this intervention on secondary and exploratory endpoints, such as caregiver burden, cognition, and occupational performance. Once efficacy is established, this intervention has the potential to harness specific environmental and situational elements of individual ADRD care and is likely to decrease burdensome BSPDs and the need for institutional care, as well as possibly delaying mortality while preserving quality of life. Given the scope of the problems being managed, occupational therapy scientists have the opportunity to focus attention on the implications of such nonpharmacological interventions that are related to declining avoidable services and lowered health care costs, including delayed residency in facility-based care, lowered utility of emergent services, decreased falls, and sustained health of care partners.

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