Exploring the provision and support of care for long-term conditions in dementia: A qualitative study combining interviews and document analysis

Abstract

Background The challenge of managing multiple long-term conditions is a prevalent issue for people with dementia and those who support their care. The presence of dementia complicates healthcare delivery and the development of personalised care plans, as health systems and clinical guidelines are often designed around single condition services. Objective This study aimed to explore how care for long-term conditions is provided and supported for people with dementia in the community. Methods In a qualitative, case study design, consecutive telephone or video-call interviews were conducted with people with dementia, their family carers and healthcare providers over a four-month period. Participant accounts were triangulated with documentary analysis of primary care medical records and event-based diaries kept by participants with dementia. Thematic analysis was used to develop across-group themes. Findings Six main themes were identified from eight case studies: 1) Balancing support and independence, 2) Implementing and adapting advice for dementia contexts, 3) Prioritising physical, cognitive and mental health needs, 4) Competing and entwined needs and priorities, 5) Curating supportive professional networks, 6) Family carer support and coping. Discussion These findings reflect the dynamic nature of dementia care which requires the adaptation of support in response to changing need. We witnessed the daily realities for families of implementing care recommendations in the community, which were often adapted for the contexts of family carers’ priorities for care of the person living with dementia and what they were able to provide. Realistic self-management plans which are deliverable in practice must consider the intersection of physical, cognitive and mental health needs and priorities, and family carers needs and resources.