Person-centered care for family caregivers of people living with dementia: Co-designing an education program for the healthcare workforce.

BACKGROUND: Recent research recommends the healthcare workforce receive competency-based education to identify, assess, support and partner with family-caregivers [FCGs} across the care trajectory.[1 2] Although the risk of FCG anxiety, burden, and loneliness to FCG's wellbeing is widely documented, typically education has been targeted towards FCG's to increase their care skills rather to educate healthcare providers to support FCG's caregiving and wellbeing.[3] OBJECTIVES: We will present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education focused on dementia. Co-design is the act of creating with stakeholders to ensure the results meet their needs and are usable. PROJECT DESCRIPTION: We began by coining the concept "caregiver-centered care," defining it as: a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about services, care management, and advocacy [4 5] . From this definition, and working with multi-level interdisciplinary stakeholders we designed[6] and validated[7] a Caregiver-Centered Care Competency Framework in a Modified Delphi Process. Stakeholders (n= 101) including FCGs, health providers, policy makers, community organizations, research team, script writer, and educational designers then used effective practices for dementia education for the health workforce [8-11] to co-design the first or 'foundational' level of a Caregiver Centered Care education program. RESULTS: Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first two months online, November 9, 2020-January 9, 2021, 352 healthcare providers completed the education. To date, learners' qualitative evaluations have been positive, "Very good information for professionals working with caregivers; especially relevant to homecare, geriatricians, allied health, and others working within the Seniors' Health realm. Engaging format that really evokes empathy for caregivers." DISCUSSION: We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). CONCLUSION: We expect that our education will support caregiver-centered care in all settings providing dementia-related care.

Physicians and Family Caregivers: Two Perspectives of Physicians' Roles in Long-Term Care.

OBJECTIVES: We explored the roles of attending physicians of long-term care (LTC) residents in supporting their family caregivers (FCGs). DESIGN: In this mixed-methods study, we conducted surveys and focus group interviews with physicians and FCGs. SETTING AND PARTICIPANTS: There were 78 FCGs and 18 physicians in the survey, and 18 FCGs and 9 physicians in the focus groups. They were recruited from 5 urban LTC settings. RESULTS: Although 83.3% of physicians reported they had experience caring for FCGs, 71.8% of FCGs perceived they had not received support from the physicians. There was no statistically significant difference between the FCGs' and physicians' mean responses to the mirrored survey questions. Both groups gave similar ratings, means neutral and agree indicative of ambivalence, on physician's knowledge to identify FCGs who need assistance, ability to assess FCG stress, and aid those experiencing distress and needing advocacy. Analysis of the focus groups revealed the overarching theme: ambiguity about the LTC residents' physicians' role in supporting FCGs. Although physicians noted that residents and families come as a unit, there was ambivalence about the physician's role in supporting FCGs. FCG roles in LTC are also vague. There were 3 sub-themes: "accord on the surface"; "tension in the interface"; and "smoothing the relationship." Both groups thought FCG medical care was beyond the purview of the resident's physician. Physicians and FCGs provided different explanations for the tensions in the FCG/physician interface. Physicians attributed tension to FCG stress and inadequate knowledge, whereas FCGs thought physicians' communication could be improved. Suggestions to smooth the relationship were to align FCG expectations to reality of LTC and different staffing models. CONCLUSIONS AND IMPLICATIONS: Family physicians, policy makers, and FCGs will need to work on polices to ensure LTC physicians' roles in supporting FCGs and FCGs' roles in LTC are delineated and supported.