Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers.

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a "whole-family approach" (as a pathway to identification), "not a carer" (self/family identification), a postcode lottery (high variability of support services), tailored support that is "fit for purpose", and the "power" of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not "fit for purpose".

Effects of an e-health intervention 'iSupport' for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study.

INTRODUCTION: In the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their own physical and mental health. The WHO recommends access to affordable, proven, well-designed, online technologies for education, skills training and support for dementia carers. In response to these recommendations, this multisite randomised controlled trial (RCT) is the first study in the UK to evaluate the clinical and cost-effectiveness of an online support programme developed by the WHO called 'iSupport for dementia carers'. METHODS AND ANALYSIS: 350 informal carers (age 18+ years) living in Britain who self-identify as experiencing stress and depression will be recruited. They will be randomised to receive 'iSupport', or standardised information about caring for someone with dementia (control-comparison). Data will be collected via videoconferencing (eg, Zoom) or telephone interview at baseline, 3 months and 6 months. Intention-to-treat analysis will ascertain effectiveness in the primary outcomes (distress and depression) and combined cost, and quality-adjusted life-year data will be used to assess cost-effectiveness compared with usual care from a public sector and wider societal perspective. A mixed-methods process evaluation with a subgroup of carers in the intervention (~N=50) will explore the barriers and facilitators to implementing 'iSupport'. A non-randomised feasibility study will adapt 'iSupport' for young carers (n=38 participants, age 11-17 years). ETHICS AND DISSEMINATION: The research plan was scrutinised by National Institute for Health Research reviewers ahead of funding being awarded. Ethical approval was granted by Bangor University's School of Health and Medical Sciences Academic Ethics Committee, reference number 2021-16915. Dissemination plans include delivering events for stakeholders, social media, a project website, developing policy briefings, presenting at conferences and producing articles for open access publications. TRIAL REGISTRATION NUMBER: ISRCTN17420703.

iSupport for Young Carers: An Adaptation of an e-Health Intervention for Young Dementia Carers.

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.

Aripiprazole long-acting injection - a mirror image study of its effects on hospitalisation at one year.

Second generation antipsychotic long-acting injections have a greater cost than older depots. Their cost-effectiveness has yet to be established. We conducted a non-interventional, observational, follow-up of patients prescribed aripiprazole long-acting injection in two centres using a mirror image method. Data were available for 160 patients consecutively prescribed aripiprazole long-acting injection, of whom 30 were not included in the analysis (21 forensic patients, five incomplete data and four lost to follow-up). Of the 130 patients, 66 (51%) remained on aripiprazole long-acting injection at one year. The mean number of bed days in the year following aripiprazole long-acting injection initiation reduced to 22.82/patient (standard deviation [SD]=55.07) from 30.09/patient/year (SD=30.40) over the three years before initiation ( p<0.001). The mean number of admissions fell from 0.71/patient/year (SD=0.55) to 0.45/patient/year (SD=0.93) over the same period ( p<0.001). The median number of bed days in the three years before aripiprazole long-acting injection was 21.67/year; in the year following it was zero. Outcomes were not statistically better in those who remained on aripiprazole long-acting injection at one year compared with those who discontinued. The prescribing of aripiprazole long-acting injection reduces average bed days and admissions compared with prior treatments. The reduction in bed days is of a magnitude that renders aripiprazole long-acting injection broadly cost-neutral.