Addressing Caregiver Burden after Persons' Living with Dementia Hospital Discharge Feasibility Testing of Offering Tele-Savvy Caregiver Program Post Hospital Discharge

Purpose: To test feasibility, acceptability, and preliminary efficacy of tele-savvy caregiver program during persons’ living with dementia (PLWDs’) post-hospitalization discharge period.

Background/significance: No telehealth transitional care programs exclusively focus on PLWD and their unpaid caregivers. Tele-savvy is a 43-day evidence-based psychoeducational online intervention designed to enhance caregiver mastery and knowledge of dementia. Tele-savvy includes seven synchronous videoconferences and 36 asynchronous video lessons. Tele-savvy has not been offered to caregivers specifically after their PLWDs’ hospital discharge. We offered tele-savvy to caregivers caring for their PLWD post-discharge to determine how a telehealth transitional care intervention must be built specifically for PLWDs’ caregivers.

Methods: Pre-/post-interventional prospective feasibility study employing quantitative and qualitative methods. Feasibility was measured via recruitment rate, attrition rate, and videoconference attendance. To ascertain preliminary efficacy of tele-savvy as a transitional care intervention, the following outcomes were measured pre- and post-program: caregiver burden, Pearlin’s caregiver stress sub-scales (relationship deprivation, caregiver competence, management of meaning), and frequency of
PLWDs’ behavioral and psychological symptoms of dementia and caregivers’ reaction towards these symptoms. Wilcoxon signed-rank test and reliable change of index were used to calculate pre-/post-changes. To determine the acceptability of tele-savvy as a transitional care intervention, caregivers participated in individual semi-structured qualitative interviews post-program. Qualitative description methodology and conventional content analysis were employed to analyze the qualitative data.

Results: Of 1409 caregivers screened, 22 consented, 20 began tele-savvy, and 15 completed post-program data collection (recruitment rate 0.8 caregivers/week, attrition 32%). Two completers attended no videoconferences. Videoconference attendance rate was 70%. Caregiver competence increased post-program (p=0.046, Cohen’s d=0.85). No other outcomes changed statistically significantly. Most frequent reliable changes included: worsening in caregivers’ reaction towards PLWDs’ depression (n=4), increase in caregiver competence (n = 3), and decrease in PWLDs’ frequency of behavioral and psychological symptoms of dementia (n=3). Fifteen caregivers completed the qualitative interviews (mean 30 minutes). Caregivers highlighted strategies they learned to communicate with PLWD. The following themes were identified: 1) intensity of caregiver burden, 2) PLWDs’ functional and cognitive decline post-discharge, 3) caregivers’ need for help navigating the health care system and respite, and 4) ways to adapt tele-savvy into a transitional care intervention.

Conclusions/implications: This feasibility study yielded lessons learned about the ways in which a telehealth transitional care intervention must be designed for PLWDs’ caregivers. Tele-savvy program was feasible and acceptable to caregivers; however, recruitment and retention were challenging. Without a comparison group, no causal inferences can be made. Improvement in caregiver competence is noteworthy. It may indicate that taking a class, even with suboptimal attendance, may enhance caregivers’ sense of control, augmenting their sense of agency, rather than seeing themselves merely as passive “players” in an intensely burdensome situation. Qualitative findings indicate that a transitional care intervention must account for severe caregiver burden. Additionally, the intervention must provide information regarding health care navigation and respite opportunities. On a health care system and community level, more subsidized respite opportunities must be provided to caregivers who frequently struggle with the financial aspect of caregiving.

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