Conectar
Admission to a mental health ward can be distressing for people living with dementia and their carers. While carer involvement is associated with improved outcomes, carers often report feeling excluded from decision-making and support during admissions. There is limited understanding of how wards engage with carers and what strategies might enhance involvement. This study seeks to address this gap by exploring carer and patient experiences during and after admission and co-producing evidence-based strategies for improved support and involvement.
The FIND ME study uses a convergent parallel mixed-methods design. A national online survey will map provision of mental healthcare for people with dementia across the UK. Narrative interviews will be undertaken with carers of current inpatients (n=24) and recently discharged individuals (n=24), with opportunities for dyadic interviews with people with dementia. Ethnographic fieldwork across three wards (30 days per site) will provide insight into organisational cultures, staff practices and carer involvement. Evidence-based co-design workshops with carers, people with dementia and staff will use these findings to identify priorities and develop practical strategies for service improvement. Finally, a feasibility study will test the acceptability, relevance and potential for implementation of these co-designed strategies. Quantitative data will be analysed descriptively, while qualitative data will undergo narrative and thematic analysis. Triangulation across datasets will ensure rigour.
Ethical approval has been granted by London Camberwell St Giles Research Ethics Committee and the Health Research Authority (REC Ref: 25/LO/0040). Informed consent will be obtained from all participants, with capacity assessed in line with the Mental Capacity Act (2005). Dissemination will include peer-reviewed publications, conference presentations and freely available multilingual resources for carers, people with dementia and ward staff, supported by NHS and third-sector partners.
NIHR161439
The aim of this study was to understand the needs of children and young people of a parent with young-onset dementia, to inform the development of a nursing model.
Children and young people of a parent diagnosed with young onset dementia have a range of needs that are subject to change and aligned to their stage of development and growth.
Systematic review.
Searches were conducted in PsycInfo (1806–Jan 2025), Medline (1996–Jan 2025) and CINAHL (1961–Jan 2025); search terms were developed in consultation with an academic librarian.
The Preferred Reporting Items for Systematic reviews and Meta-Analyses was used to assess the trustworthiness and applicability of the findings and the Mixed Methods Assessment Tool to assess quality. The review protocol was registered on PROSPERO (CRD42024534104). Needs identified from the literature were matched with the activities and interventions of a specialist nursing model.
Searches yielded 223 records of which 17 met the inclusion/exclusion criteria, the majority of which used qualitative methods (N = 16). A thematic synthesis approach was used to analyse data to reveal four emergent themes: (1) finding a way, (2) social connection and peer support, (3) preserving childhood and adolescence and (4) practical support, including the needs relating to education. Identified needs: knowledge and information, emotional support, consistency in education and development, maintaining social connections, physical and psychological well-being, and grief and loss were mapped against a specialist nurse role.
Children and young people with a parent diagnosed with young-onset dementia face unique challenges compared to older carers. Despite growing awareness of their needs, this population is often overlooked in national dementia strategies. Developing a specialist nurse role is a positive step, but broader systemic support is essential to safeguard their well-being and future opportunities.
This study adheres to the PRISMA reporting guidelines.
A bespoke Research Advisory Group, consisting of people with young onset dementia, young family carers, clinicians and academics, guided the review.
Background
Research involvement and engagement is a vital aspect of nursing practice. However, research in dementia care remains limited compared to research focused on finding a cure, presenting a significant gap that specialist dementia nurses (Admiral Nurses) can help bridge by participating in research themselves and facilitating recruitment to research.
Objectives
This study aimed to assess the research involvement and support needs of Admiral Nurses and identify factors affecting their participation in research. This research is particularly timely as Dementia UK has launched its first research strategy, which necessitates strengthening research capacity within Admiral Nursing.
Methods
We used a mixed methods convergent parallel synthesis design, simultaneously collecting quantitative and qualitative data. An online survey was conducted in January 2023, targeting current Admiral Nurses across the United Kingdom. The survey included questions addressing demographics, research experience, goals, barriers, facilitators, and support needs. Data analysis involved descriptive statistics, frequencies, univariate analyses, and thematic analysis.
Results
A positive relationship was found between the highest level of academic achievement and current or previous research involvement, as well as interest in becoming involved in research in the future. Although most nurses recognized the importance of research, only half reported current or past research involvement, indicating a need for increased support. A lack of access and opportunities for peer discussion hindered engagement with research findings. Time constraints, lack of support, and low confidence were major barriers to research involvement. Support needs varied but included mentorship, coaching, and the potential for a community of practice for research.
Discussion
This survey of Admiral Nurses sheds light on their research involvement, support needs, and barriers to participation. Recognizing the significance of research while identifying challenges and support requirements is crucial for enhancing research capacity among these specialized nurses. This study contributes valuable insights into the world of specialist dementia nursing and lays the foundation for future strategies to increase research engagement in this field. 
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