Understanding family care from a team perspective : size, dynamics, and networks in the context of aged and dementia care

Abstract

Aged care is becoming a huge challenge with rapid ageing globally. As demands for aged care increases with an expanding older population, supply of formal care decreases with a shrinking available workforce. Care provided by family will continue to and increasingly be the main source of support for maintaining health and quality of life in older adults. Providing family care for older adults can however be stressful, with negative impacts on the health of family carers. New directions for strengthening the capacity of family care is needed to sustain aged care. In societies that emphasize familism, family care for older adults is shared by multiple family members. Strengthening shared family care is a possible solution for sustainable aged care. For decades, family care research focused on a ‘dyad’ concept, consisting of an older adult and a single primary carer, without considering the care family as a whole. This thesis consisted of three sub-studies with different focus and objective. Study 1 focused on family size and aimed to examine the relative contribution of care demands and family resources to carer burden. Study 2 focused on family dynamics and aimed to explore the preparedness for dementia care of family as a unit. Study 3 focused on network of care family and aimed to explore the evolvement of a naturally occurring, informal carer-initiated and delivered group dementia intervention. Study 1 was a longitudinal study in 345 family carers providing aged care in the community with 2-year follow-up (n=89). It was found that family resources, including care family size, contributed to 32.2% of variance in carer burden change at 2 years (model R2 = 0.396), whereas care demand did not predict carer burden change. Families taking care of an older adult with more comorbidities at baseline had involved more family members in caregiving at 2-year follow-up. Study 2 was a qualitative study that conducted in-depth interviews with 10 family units in which multiple carers were involved in dementia care. Using thematic analysis, six components of family preparedness for care emerged: 1) common understanding of care needs, 2) alignment of expected involvement and stable configuration, 3) coordinator for flexible task distribution, 4) exchange of care knowledge and resources, 5) decision making and conflict resolution, 6) emotional support and appreciation. These components were comparable to those of effective work teams in organizations. Family characteristics and dynamics had influenced the shaping of family preparedness. Study 3 was a qualitative descriptive inquiry in which in-depth interviews were conducted with seven informal carers and two formal carers, who were the complete sample of the phenomenon. Using thematic analysis, five themes representing five stages of the evolvement emerged: (1) individual learning; (2) connection by formal care; (3) triggering of team formation; (4) team formation and preparation with formal care support; and (5) delivering intervention as a team. A model of formal-informal collaboration in dementia intervention delivery is developed. A decrease in the actual number of family carers involved is associated with increasing level of carer burden, above and beyond the effect of care demands. Family dynamics including relationship, communication pattern and family values influences family preparedness for care. To form informal care network for delivering group intervention, it requires the evolvement of both relationship and role of the carers.