Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

An evaluation of the role of the Admiral Nurse : a systematic evidence synthesis to inform service delivery and research

Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. There are currently around 100 Admiral Nurses employed in England. In addition the charity has a national helpline provided by experienced Admiral Nurses. The evidence synthesis presented here was commissioned by Dementia UK in order to establish what is currently known about the scope, nature and effectiveness of Admiral Nurse

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Designing a gamified social platform for people living with dementia and their live-in family caregivers

In the current paper, a social gamified platform for people living with dementia and their live-in family caregivers, integrating a broader diagnostic approach and interactive interventions is presented. The CAREGIVERSPRO-MMD (C-MMD) platform constitutes a support tool for the patient and the informal caregiver - also referred to as the dyad - that strengthens self-care, and builds community capacity and engagement at the point of care. The platform is implemented to improve social collaboration, adherence to treatment guidelines through gamification, recognition of progress indicators and measures to guide management of patients with dementia, and strategies and tools to improve treatment interventions and medication adherence. Moreover, particular attention was provided on guidelines, considerations and user requirements for the design of a User-Centered Design (UCD) platform. The design of the platform has been based on a deep understanding of users, tasks and contexts in order to improve platform usability, and provide adaptive and intuitive User Interfaces with high accessibility. In this paper, the architecture and services of the C-MMD platform are presented, and specifically the gamification aspects. © 2018 Association for Computing Machinery.Peer ReviewedPostprint (author's final draft