Search results

The purpose of this paper is to describe the process of developing a contemporary competency framework for admiral nurses in dementia care.

Information and evidence was gathered from research and policy literature regarding competencies to deliver advanced practice within dementia care. An online survey completed by 75 admiral nurses with follow-up interviews clarified current practice across the range of service contexts in which they work. A focus group (FG) of people living with dementia and family carers, and a reference group of practitioners helped to develop a competency framework which was refined through FGs with admiral nurses working in different areas.

The literature review, survey and interviews provided a framework grounded in up-to-date evidence and contemporary practice. There was broad agreement in the literature and the practitioners’ priorities regarding the core competencies of advanced practice, with constructive suggestions for making the framework useable in practice. This resulted in a robust framework articulating the competencies of admiral nurses which could be used for continuous professional development.

Engaging the admiral nurses ensured the competencies were contemporary, succinct and applicable within practice, and also cultivated a sense of ownership. Developing the competency framework with the admiral nurses not for them provides an approach which may have value for professionals undertaking a similar process in their specialist area. It is anticipated the competency framework will provide further evidence of the benefits of specialist nurse support for families affected by dementia.

Post-diagnostic dementia care is often fragmented in the United Kingdom, with great variation in provision. Recent policies suggest moving towards better community-based care for dementia; however, little is known on how this care is delivered. This study aimed to map the post-diagnostic dementia support provided in England a decade after the introduction of a National Dementia Strategy.

A mixed-methods e-survey (open Nov 2018–Mar 2019) of dementia commissioners in England recruited through mailing lists of relevant organisations was conducted. The authors descriptively summarised quantitative data and carried out thematic analysis of open-ended survey responses.

52 completed responses were received, which covered 82 commissioning bodies, with representation from each region in England. Respondents reported great variation in the types of services provided. Information, caregiver assessments and dementia navigation were commonly reported and usually delivered by the voluntary sector or local authorities. Integrated pathways of care were seen as important to avoid overlap or gaps in service coverage. Despite an increasingly diverse population, few areas reported providing dementia health services specifically for BME populations. Over half of providers planned to change services further within five years.

There is a need for greater availability of and consistency in services in post-diagnostic dementia care across England.

Post-diagnostic dementia care remains fragmented and provided by a wide range of providers in England.

This paper both supports previous findings relating to, and presents new insights into: the information needs and the information seeking processes of a sample of informal caregivers of people with dementia (in relation to their own needs and the interrelated needs of the people they are caring for); the extent to which such information needs are and are not being met; and the factors facilitating and hindering access to the right information.

The study adopted a qualitative approach in the form of a thematic analysis of in-depth, semi-structured interviews with a sample of 20 informal caregivers from a range of different age groups, genders and caring roles.

Thematic analysis identified significant informational challenges, with a common perception that information seeking was onerous, requiring a proactive approach. Further challenges arose from a perceived lack of focus on carer needs coming up against the boundaries of professional knowledge and inconsistent information provision across the sample. Distance carers faced specific issues. A second theme of negative impacts described burdens arising from: difficulties in accessing information from a complex array of support services closure or change in services and unfulfilled information needs. Participants employed strategies to enable access to information, for example, being open about their caring role; and building formal or informal support networks. It is important to address emotional as well as cognitive dimensions of information needs.

This research highlights a need for health and social care, practice and policy to acknowledge and address information needs of this diverse population and build resilience. Above all, information seeking and sharing must be understood within the context of the emotional impact of caring, and recognition of these twin needs is crucial.

Whilst previous research has focussed on identifying specific needs and knowledge acquisition at cross-sections, a more holistic understanding of experiences is underexplored. This approach is needed to take into account broader contexts, diversity of experiences and different caring roles, e.g. primary and secondary carers, and in situ and distance carers.