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No / This paper will provide an overview of the specific issues related to involving service users and carers in work-based practice assessment of health and social care students. The outcomes of a shared workshop that involved service users and carers, practice assessors and students in the development of an interprofessional assessment tool, will be discussed. Key areas of concern, across all participants, were related to ethical, reliability and validity issues. These will be explored against the of current literature, and recommendations will be made for involving service users and carers in assessment of practice. The original work for this paper was part of the Assessment and Learning in Practice Settings (ALPS) Centre for Excellence in Teaching and Learning (CETL), which is working towards a framework of interprofessional assessment of common competences in the health and social care professions.

Yes / Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal’s Model of Self-Regulation suggests perceptions ofillness facilitate help-seeking behaviours such as the use of services. Thisscoping exercise makes use of the model to explore perceptions ofdementia in British Indian, African and Caribbean, and East and CentralEuropean communities in the United Kingdom. Between August 2013and April 2014, culturally specific dementia awareness roadshows wereattended by people living with dementia, carers and members of thepublic. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated indiscussion groups and a dementia knowledge quiz. Thematic andframework analysis were conducted on the discussion group data. Threemain themes are presented: Perceptions of dementia, awareness ofdementia in the wider family and community, and awareness and use ofservices. The findings suggest that although groups attributed a biologicalbasis for memory loss, a number of misconceptions prevailed regardingthe cause of dementia. Groups also made use of religion, as opposed tomedical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awarenessof services, and culturally specific barriers such as language. The findingshave a number of implications for policy and practice including thedevelopment of public health interventions and the need to focus further on reducing barriers to accessing services.

No / Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making. We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist. We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict. We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.

Yes / The qualitative study presented in this paper explored the perspectives of serviceusers, family members and staff about the impact of travel issues on the lives of mental health in-patients and carers. This topic was chosen because it was prioritised by members of Xplore, a service-user and carer research group, and has received little research attention. Travel problems were a significant issue for many service-users and carers, bound-up with mental health issues and the recovery experience. Travel facilitation through the funding of taxis and the provision of guides was greatly appreciated. A few service-users and carers positively valued distancing from their previous home environment. The meaning of travel issues could only be understood in the context of individuals’ wider lives and relationships. The significance of the findings is discussed in relation to the social model of disability. / This work was supported by a grant from The West Yorkshire Mental Health Research and Development Consortium.

Yes / Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study we propose that a needs-led approach can provide a useful, novel means of conceptualising the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. Nine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positives aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning. / Medical Research Council and the National Institute for Health Research (NIHR). Grant title: HQLC Dementia Carers Instrument Development: DECIDE (MR/M025179/1) / Research Development Fund Publication Prize Award winner, August 2018.

Yes / Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively. / National Institute for Health Research (NIHR)

Yes / People with dementia or mild cognitive impairment (MCI) and their family carers face challenges in managing medicines. How medicines self-management could be supported for this population is unclear. This review identifies interventions to improve medicines self-management for people with dementia, MCI and their family carers, and which core components of medicines self-management they address. Methods A database search was conducted for studies with all research designs and ongoing citation searches from inception to December 2021. Selection criteria included community dwelling people with dementia and MCI and their family carers, and interventions with a minimum of one medicine self-management component. Exclusion criteria were wrong population, not focusing on medicines management, incorrect medicines self-management components, not in English and wrong study design. Results are presented and analysed through narrative synthesis. The review is registered [PROSPERO (CRD42020213302)]. Quality assessment was carried out independently applying the QATSDD quality assessment tool. Results Thirteen interventions were identified. Interventions primarily addressed adherence. A limited number focused on a wider range of medicine self-management components. Complex psychosocial interventions with frequent visits considered the person’s knowledge and understanding, supply management, monitoring effects and side-effects and communicating with healthcare professionals; and addressed more resilience capabilities. However, these interventions were delivered to family carers alone. None of the interventions described patient and public involvement. Conclusion Interventions, and measures to assess self-management, need to be developed which address all components of medicines self-management, to better meet the needs for people with dementia and MCI and their family carers.

Yes / We explored (1) social, cultural, and economic capital in spousal carers of people with dementia; (2) profiles of carers with different levels of capital; (3) whether the identified profiles differ in levels of stress and positive experiences of caring, and likelihood of depression over time. Baseline (2014-2016), 12-month, and 24-month follow-up data were analyzed for 984 coresident spousal carers of people with dementia. We assessed social, cultural, and economic capital, stress, positive experiences of caring, depression. On average, carers reported infrequent social and cultural participation. Most carers were not socially isolated, trusted their neighbours, had education at least to age 16, and had an income aligned with the 2014 UK average. We identified four groups of carers with different levels of capital. Although on average stress was low, depression was infrequent, and positive experiences of caring were moderately frequent, the group of carers with lowest capital was the least stressed and reported the most positive experiences of caring over time. Compared to the two groups with better capital, those with poorer capital were more likely to be depressed over time. Social, cultural, and economic resources may decrease likelihood of depression, but not stress, in carers of people with dementia.

South Africa faces a high disease burden and a limited public capacity to provide care to the ill. Research from the UK and sub-Saharan Africa suggests the burden often falls to children, who also take over domestic responsibilities necessary for household survival. To date, there is limited research exploring the relationship between parental illness and children’ responsibilities, or the moderating effect of socio-demographic variables. The thesis is comprised of three research phases. The first is a literature review to summarise existing research and identify substantial gaps, which included limited amounts of quantitative evidence on this topic and a lack of a tool to as-sess child responsibility that had both been adapted to the South African context and included caring responsibilities. The second research phase consists of an exploratory study of n = 349 children living with ill adults in urban and rural communities in the Western Cape province of South Africa to investigate their range of responsibility, which included caring for an ill parent, household chores, childcare, and income-generation. The resulting data were used to create the Child Responsibility Measure, which assesses the range and time burden of re-sponsibilities among South African children. The third research phase is a cross-sectional quantitative survey of n = 2,476 pairs of children and parents from urban and rural communities in KwaZulu-Natal province, South Africa. Resulting data on parental health, socio-demographics, and child responsibilities were analysed with multiple regres-sions to determine drivers of children’s responsibility. Among the findings were that parental illnesses increase the likelihood children provide care and have larger responsibility workloads, and girls are more likely to take on all types of responsibility excluding income-generating activities, which were more common in boys. Additionally, while urban children were more likely to provide personal care, rural children had greater responsibility workloads.