Family carers’ perspectives on care for older people living with dementia: interactions and involvement with health services, and the role of health literacy

Background: Care policies worldwide aim to control care expenses and provide more care in peoples’ homes, increasing the importance of informal care and the role of family carers’. This Ph.D. project aims to better our understanding of family carers’ perspectives on care provision to older people living with dementia, and how the interplay between health services and informal carers may be enhanced to improve care provision. Method: The study followed an exploratory sequential mixed method design: Substudy 1 was based on in-depth, semi-structured interviews of 23 family carers for older people living with dementia, to explore experiences with care provision. Transcribed interviews were coded and analyzed in four steps, informed by hermeneutics, phenomenology, and thematic analysis. Building on findings from Substudy 1, Substudy 2 comprised a quantitative survey in a larger sample of 188 family carers. Results were analyzed using descriptive statistics, and multiple linear regression models were used to test assumptions that health literacy could predict carer burden, health-related quality of life, and time spent on informal care. Results: Analysis of the interviews highlight how family carers may identify care needs unmet by health services, and indicate four preventive practices employed in their care, aiming to prevent physical, emotional, economic, and relational harm. In interactions with health services, family caregivers resort to two broad involvement strategies: (1) being “the hub in the wheel”, through conciliatory co-ordination; and (2) “getting the wheel rolling”, using purposeful and assertive acts to improve leverage. Both strategies have costs and benefits, and use depends on available personal resources. The survey participants displayed high levels of health literacy, a partially trainable personal resource. Regression analyses indicate that higher health literacy was associated with lower carer burden, higher healthrelated quality of life, and less time spent on informal care. Conclusion: Family cares can be valuable resources in care provision for older people living with dementia, adding important perspectives on safety and quality of care, and facilitating co-ordination and utilization of resources. Strong partnerships between formal and informal care may benefit from awareness of interaction challenges, including involvement strategies; differences in perspectives and motivations, including preventive practices; and differences in personal resources, such as different levels of health literacy