Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments.

BACKGROUND: People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care. METHODS: Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data. FINDINGS: Twenty-seven unpaid carers (n = 21) and professionals (n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services. CONCLUSIONS: To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia.

Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.

Dementia care navigation: A systematic review on different service types and their prevalence.

BACKGROUND: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts. METHODS: The review was registered on PROSPERO [CRD42021292518]. Three electronic databases were searched and included studies reported on a DCN service, defined as a service in which non-clinically trained workers provide personalised advice and support to people with dementia and/or carers in the community. Two independent reviewers screened abstracts and titles and read through full papers for inclusion. Risk of bias was assessed using the Standard Quality Assessment QualSyst. RESULTS: We included 14 papers reporting on six studies. All services were US-based and only varied by integration and training provided. Studies reported different degrees of impact on service utilisation and on symptoms and mental well-being of people with dementia and their carers, with too little evidence to draw substantial/meaningful conclusions and studies employing different outcome measures. One study evidenced greater impacts on people with more advanced dementia compared to earlier stages. CONCLUSIONS: DCN services have the potential to effectively provide non-clinical support to people with dementia and carers from the point of diagnosis. Further research from countries other than the USA, focusing on the impact on social care and social support service access and utilisation, and utilising similar established outcome measures are required.

Children's developing understanding of economic inequality and their place within it.

Income inequality is growing in many parts of the world and, for the poorest children in a society, is associated with multiple, negative, developmental outcomes. This review of the research literature considers how childrens' and adolescents' understanding of economic inequality changes with age. It highlights shifts in conceptual understanding (from 'having and not having', to social structural and moral explanations), moral reasoning and the impact of the agents of socialization from parents to the media and cultural norms and discourses. It also examines how social processes affect judgements and the importance of an emerging sense of self in relation to questions of economic inequality. Finally, the review covers methodological considerations and suggests pathways for future research.

Children's disaster knowledge, risk perceptions, and preparedness: A cross-country comparison in Nepal and Turkey.

While children are one of the groups at risk in disasters, they can also take an active part in disaster management, provided that the opportunity is given. This research examined the effect of disaster experience, disaster education, country, and city socioeconomic status on children's perceived risk and preparedness with a survey of 1335 children between 11 and 14 years old, in Nepal and Turkey. The survey used questionnaires and the pictorial representation of illness and self measure (PRISM) tool. Results showed that (1) children's risk perceptions were in line with their country-specific objective risks; (2) there were differences between the countries in relation to perception of risk for all the hazards except wildfire; (3) socioeconomic status had a statistically significant effect on children's perceptions of risk and preparedness for earthquakes, wildfires, that is, children who live in wealthier places had higher perceived risk and preparedness; (4) children in both countries showed similar trends in their knowledge of the correct protective actions to take in the event of a hazard occurrence. However, there is still room to enhance children's knowledge, in terms of safety behaviors, as the children selected many incorrect protective actions. There are important implications in terms of child-centered disaster management which hopefully will make life safer and help to create more resilience to disaster in society as a whole.

Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic.

BACKGROUND: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. METHODS: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. RESULTS: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. DISCUSSION: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

Liberating the potential: the role of non-nurses in adding value to nurse education.

In this paper, I have attempted to explore the role of non-nurse lecturers in adding value to nurse education programmes. In measuring "added-value" in higher education, I have embraced a more comprehensive approach including investigating the views of "Experts"; including the nurse and non-nurse lecturers themselves, and various United Kingdom stakeholders such as the Government, the Nursing and Midwifery Council and the Quality Assurance Agency. The students' views are also taken into account, when considering both the content of the programmes and how they are delivered. The complexity of "objective measurement" is considered, and the requirements of a "good" teaching experience. The potential areas for adding value include: health and social care policy priorities which encourage partnership working, the blurring of professional boundaries, and inter-professional working. Professional-specific changes embracing extended and enhanced roles and the concepts of specialist and assistant practitioners. Other areas include the Higher Education agendas including transferable skills and adult and student-centred learning. I conclude by discussing the latest policy changes and suggest that the role of the non-nurse lecturer needs more exploration to provide the best value for all.