Supporting the management of long-term conditions in dementia

Background: Most people with dementia live with another long-term condition requiring additional support. There is little evidence about how long-term condition guidance is adapted by professionals to account for dementia, and how people with dementia and their carers manage long-term conditions in the community. Aim: I aimed to understand how people living with dementia manage and are supported to manage co-occurring long-term conditions in the community, by family carers, homecare workers and primary care. Methods: I systematically reviewed the literature on self-management and undertook a secondary thematic analysis exploring experiences of people living with dementia, and their carers, regarding the management of co-occurring long-term conditions. This informed a qualitative study where I developed eight in-depth case studies of dementia care networks. I thematically analysed data from remote qualitative interviews, event-based diaries and consultation notes to explore how this management occurred in the community. Findings: From 13 studies, I found in my systematic review how dementia symptoms inhibited self-management of long-term conditions, while adaptations and routines enabled it. Family carers, supported by healthcare professionals, substituted self-management where and when necessary. My secondary analysis of 82 interviews identified how the process of substituting self-management evolved with advancement of dementia symptoms. Communication in the care network was critical to ensure care plans were adapted to consider the impact of dementia on long-term conditions and vice versa. In my qualitative study, I identified six themes across eight case studies: 1) Balancing support and independence, 2) Implementing and adapting advice for dementia context, 3) Balancing physical, cognitive and mental health needs, 4) Competing and entwined needs and priorities, 5) Curating supportive professional networks, 6) Family carer support and coping. Conclusion: Based on an integrated summary of findings I conclude that support for managing long-term conditions in dementia should be holistic, flexible, and consider networks of care.