Methods: This pre-post feasibility trial involves 6 sessions (4 in person at the clinic and 2 by phone) with the identified caregiver and any other family who wishes to attend, which may also include the person living with dementia. The program focuses on early stage post-diagnosis, and is structured around building rapport, empowering families to build support networks, and teaching skills and knowledge-based material.
Results: Twenty four participants have contributed to data collection for this pilot study. Change on the Preparedness for Caregiving Scale is significant (t=3.03, p=.001, Cohen’s d=2.49). Means for the Zarit Burden 12-item scale went from 24.5 to 13.17 (t=-6.65, p=.03, Cohen’s d=3.53). Access by care recipients to dangerous objects decreased (67% to 14%). Confidence in ability to use behavioral strategies in caregiving increased from 8% at baseline to 72% at study completion. Satisfaction surveys indicate high satisfaction with all elements of the intervention.
Conclusions and Implications: Previous research clearly provides evidence that training for caregivers translates into better long-term outcomes for both care providers and recipients. We are attempting to provide training at an earlier stage of disease progression and in a novel setting. These adaptations make evidence-based practice available to a broader cross-section of families who might not otherwise seek out such training, offer the opportunity to build on relationships with medical teams and strengthen those relationships for families, and alleviate stigma of participation. Results have demonstrated feasibility of this intervention; providing early intervention and training is expected to reduce utilization of emergency care use over time, and improve quality of life for families, leading to both financial and subjective returns on investment. A future randomized controlled trial should examine whether early intervention and training reduces utilization of emergency care over time and improves quality of life for families.