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The purpose of this paper is to share the learning concerning how services and the paid carers working in them can support people living with dementia (PLWD) and their unpaid carers to overcome social isolation. This learning comes from the key findings from a Social Return on Investment (SROI) evaluation of a Shared Lives (SL) Day support service, known as TRIO.

SROI is a form of cost-benefit analysis that captures and monetises stakeholder outcomes. The SROI evaluation included a rapid evidence review, an interview study and a questionnaire study. The learning shared is drawn from the interview and questionnaire data that explored the reported outcomes relating to social connection, which included data related to participating in meaningful activities, confidence and independence.

PLWD who accessed the SL Day support service experienced better social connection, a sense of control over their activities (including their social activities) and community presence. A key foundation of these outcomes was the meaningful relationship that developed between the PLWD, their unpaid carer and the paid carer.

This evaluation was a pilot study with a small, albeit representative sample size.

The learning suggests feasible and effective ways for paid carers to support the social connection of PLWD and their unpaid carers with their wider community.

There has been little exploration of how community-based short breaks (like SL Day support) can enhance social connection. The authors drew on a social relational model lens to illustrate how this service type had supported successful outcomes of community and social inclusion for PLWD.

In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations.

Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy.

Limitations included the relative lack of male carer participants and the convenience sample.

Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement.

There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

The aim of this action research was to explore, from a workforce and a patient/carer perspective, the skills and the capacity required to deliver integrated care and to inform future workforce development and planning in a new integrated care system in England.

Semi-structured interviews and focus groups with primary, community, acute care, social care and voluntary care, frontline and managerial staff and with patients and carers receiving these services were undertaken. Data were explored using framework analysis.

Analysis revealed three overarching themes: achieving teamwork and integration, managing demands on capacity and capability and delivering holistic and user-centred care. An organisational development (OD) process was developed as part of the action research process to facilitate the large-scale workforce changes taking place.

This study did not consider workforce development and planning challenges for nursing and care staff in residential, nursing care homes or domiciliary services. This part of the workforce is integral to the care pathways for many patients, and in line with the current emerging national focus on this sector, these groups require further examination. Further, data explore service users' and carers' perspectives on workforce skills. It proved challenging to recruit patient and carer respondents for the research due to the nature of their illnesses.

Many of the required skills already existed within the workforce. The OD process facilitated collaborative learning to enhance skills; however, workforce planning across a whole system has challenges in relation to data gathering and management. Ensuring a focus on workforce development and planning is an important part of integrated care development.

This study has implications for social and voluntary sector organisations in respect of inter-agency working practices, as well as the identification of workforce development needs and potential for informing subsequent cross-sector workforce planning arrangements and communication.

This paper helps to identify the issues and benefits of implementing person-centred, integrated teamworking and the implications for workforce planning and OD approaches.

Involvement of parents/carers may increase effectiveness of primary school-based alcohol-misuse prevention projects through strengthening family-based protective factors, but rates of parental engagement are typically low. This paper reports findings from an exploratory trial of a school-based prevention intervention – Kids, Adults Together (KAT), based on the Social Development Model, which aimed to promote pro-social family communication in order to prevent alcohol misuse, and incorporated strategies to engage parents/carers. The purpose of this paper is to assess the feasibility and value of conducting an effectiveness trial of KAT.

The study was a parallel-group cluster randomised exploratory trial with an embedded process evaluation. The study took place in south Wales, UK, and involved nine primary schools, 367 pupils in Years 5/6 (aged 9-11 years) and their parents/carers and teachers. Questionnaires were completed by pupils at baseline and four month follow-up, and by parents at six month follow-up.

Overall KAT was delivered with good fidelity, but two of five intervention schools withdrew from the study without completing implementation. In total, 50 per cent of eligible parents participated in the intervention, and KAT had good acceptability among pupils, parents and teachers. However, a number of “progression to effectiveness trial” criteria were not met. Intermediate outcomes on family communication (hypothesised to prevent alcohol misuse) showed insufficient evidence of an intervention effect. Difficulties were encountered in identifying age appropriate outcome measures for primary school-age children, particularly in relation to family communication processes. The study was unable to find comprehensive methodological guidance on exploratory trials.

It would not be appropriate to conduct an effectiveness trial as key progression criteria relating to intervention and trial feasibility were not met. There is a need for new measures of family communication which are suitable for primary school-age children, and more guidance on the design and conduct of exploratory/feasibility trials.

KAT achieved high rates of parental involvement, and its theoretical framework and processes could be adapted by other interventions which experience difficulties with recruitment of parents/carers.

The purpose of this paper is to explore the link between one aspect of primary care in England – the annual review by general practitioners for dementia patients – and length of hospital stay (LoS). The annual review should identify the needs of both patients and carers and co-ordinate services across health and social care to address those needs. If this is done well, timely discharge from hospital may be facilitated.

The study uses linked national data from 2006/2007 to 2010/2011 on over 36,000 patients, employing sophisticated statistical techniques to isolate the effect of the annual dementia review on LoS.

Hospital patients discharged to the community have significantly shorter stays if they are cared for by practices that reviewed a higher percentage of their patients with dementia. However, this effect is small and is not evident for patients discharged to care homes or who died in hospital. Longer LoS is associated with a range of co-morbidities, markers of low availability of social care and with intensive provision of informal care.

Although the dementia review has only a modest effect on LoS, the components of the review could improve the health and well-being of those with dementia and their carers.

The study is the first to employ a robust methodology to investigate the impact of the annual dementia review on hospital LoS, an important aspect of the interface between primary and secondary care. There are implications for clinical and financial aspects of health and social care policy.

This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.

This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.

This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.

Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.

This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

The purpose of this paper is to report on the views and experiences of older people using Shared Lives (adult placement) in 2012/2013.

As part of a survey collecting information about outcomes for older users of Shared Lives issues of whether it had made a difference to quality of life, and positive and negative experiences of support were explored.

Questionnaires were returned by 150 older people using Shared Lives services. Findings suggest that this model of community-based support has a number of advantages for some older people, such as reducing social isolation and loneliness, promoting independence, choice and control, providing emotional support and increased well-being.

The questionnaire was self-completed and so responses were not followed up to provide deeper insights.

Shared Lives is not appropriate for everyone but it is suggested that this option should form part of local commissioning strategies, be part of a range of options for social care practitioners to consider in their work with older people and helps to meet various current policy imperatives.

The potential of Shared Lives for older people is under-researched and this paper contributes to the literature in exploring the views of older people about family-based support in the community.

The purpose of this paper is to understand factors that affect viewing of television news programmes by people living with dementia, and to identify dementia-friendly design principles for television news programmes and factors for personalising object-based media broadcast.

Extensive public involvement comprising two discussion groups with people with dementia and family carers informed the study design and provided supplementary secondary data. Primary data collection comprised a focus group interview with people with dementia (n=4) and family carers (n=4). Past viewing experiences and perceived barriers and facilitators to viewing television were explored. Participants commented on an array of video clips comprising varying segments of fictional news programmes, plus control versions of each segment.

Four themes were identified: content (general comments, context, type of media and pace); presenter (body language, clothing and accent); background (location and studio appearance); and technical aspects (graphics, sound, colours, camera, transitions, general issues).

Limitations included a modest sample size which is offset by exemplary public involvement in informing the study design.

Measures ensured research involvement and participation was made accessible to people living with dementia.

Participants benefited from sharing views with peers and expressed enhanced wellbeing from knowing their participation could lead to improved television viewing, an important social occupation, for people with dementia in the future.

This study is the first to be published which focusses on dementia-friendly television news programmes.

This article analyses community care services (CCS) in terms of availability, awareness, accessibility, and acceptance (the Four A’s approach), untangles the deep-seated factors underlying the CCS and provides some short-term, medium-term, and long-term recommendations.

A literature review was conducted, including relevant government reports, consultation papers, Legislative Council papers and articles from academic journals from 1980 to the present.

The Four A’s approach shows that applicants to both centre-based services and home-based services endure lengthy waiting times because of the limited number of CCS. Furthermore, the awareness of day respite services is approximately 50 percent, which lags behind other CCS. Accessibility is contingent on a cross-district day respite service system and a lack of consistency between the quota and the proportion of older adults in the districts. Finally, the level of service provided by CCS is unsatisfactory due to inflexible service provision. Reviewing the brief history of long-term care services (LTC) reveals the deep-seated factors at the core of their heavy reliance on the subvention model, in contrast to the adoption of the ‘mixed economy of care’ by residential care services (RCS). An imbalance in budget allocation to RCS and CCS is also revealed.

Although the principle of ‘ageing in place’ was introduced in 1977, the institutionalisation rate (6.8 percent) of older adults remains unexpectedly high in Hong Kong, even surpassing its Asian counterparts, whereas the usage rate of CCS hovers around 0.8 percent. Thus, how to implement policy concerning LTC services for older adults must be re-evaluated.

A narrative has developed in recent years to link ageing without children to support needs in later life. Social care has long been viewed as a private, familial responsibility, whilst health care is a societal, public good. Childlessness is framed negatively in terms of increased demands on care services and wider family networks. As governments tackle the issue of how to fund and deliver an equitable and sustainable long-term care sector, this paper aims to argue that it is more critical than ever to evaluate views of childlessness in the context of ageing.

Policy-oriented commentary paper.

If the focus on childlessness and ageing is through a lens of a potential care deficit, this continues to frame ageing without children as a risk and does little to challenge increasing reliance on unpaid care. Research and policy need to explore how to make access to social care more equitable and reduce expectations of unpaid care. They also need to increasingly emphasise exploration of aspects of later life beyond the issue of care, for example, by more of a focus on communities, what matters to people to age well and lives that extend beyond traditional views of nuclear families.

This paper uses the UK as a contextual example to argue that the research and policy communities have a role to play in evaluating their constructions of childlessness and ageing and questioning whether they do little more than legitimise government’s unwillingness to take responsibility for social care.