Abstract
Carers of people with dementia can experience reduced health and well-being, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the United Kingdom dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in-depth interviews with carers of people with dementia (n=35) and analysed thematically using the framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman's model of continuity of care (Freeman et al., Continuity of care, 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt 'supported' in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers' reports of feeling supported. Specialist nurses are well placed to provide this continuity.
Highlights
In the United Kingdom, an estimated 885,000 people currently live with dementia (Wittenberg et al, 2019), supported by at least 700,000 unpaid carers (Alzheimer's Research UK, 2015)
Carers were invited to take part by Dementia UK in two geographical areas with Admiral Nursing (AN areas) and through alternative routes in two comparable areas that did not have an Admiral Nursing service. Those who expressed an initial interest were contacted by a researcher who discussed the research in more detail, answered any questions and obtained written informed consent
This paper presents the findings of analysis of qualitative data provided by carers of people with dementia for a study about specialist nursing case management, using Admiral Nursing as an example
Summary
In the United Kingdom, an estimated 885,000 people currently live with dementia (Wittenberg et al, 2019), supported by at least 700,000 unpaid carers (Alzheimer's Research UK, 2015). A meta-review of the international evidence on interventions to support carers found some promising evidence (with specific reference to carers of people with dementia) for cognitive reframing, psychosocial interventions, educational interventions, meditation-based interventions, telephone counselling and support groups (Thomas et al, 2017). These interventions seem somewhat disparate in content, but the authors note that they all bring carers together with ‘people who know about dementia’ in one way or another These interventions seem somewhat disparate in content, but the authors note that they all bring carers together with ‘people who know about dementia’ in one way or another (p. 76)
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