Background: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery. Objective: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions. Methods: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised.

Objectives To describe the characteristics of Dementia Friendly Communities (DFCs) across England in order to inform a national evaluation of their impact on the lives of those affected by dementia. Methods DFCs in England were identified through online searches and Alzheimer's Society records. A subsample (n = 100) were purposively selected for in‐depth study based on online searches and, where necessary, follow‐up telephone calls. Data collection and analysis were guided by a pilot evaluation tool for DFCs that addressed how DFCs are organised and resourced and how their impact is assessed. The evidence was predominantly qualitative, in addition to some descriptive quantitative information. Results Of 284 DFCs identified, 251 were defined by geographical location, while 33 were communities of interest. Among 100 sampled DFCs, 89 had been set up or started activities following policy endorsement of DFCs in 2012. In the resourcing of DFCs, statutory agencies and charities played an important role. Among DFC activities, awareness raising was cited most commonly. There was some evidence of involvement of people living with dementia in organisational and operational aspects of DFCs. Approaches to evaluation varied, with little evidence of findings having effected change. Conclusions DFCs are characterised by variation in type, resourcing, and activities. England has policy endorsement and a recognition system for DFCs. These can be important catalysts for initiation and growth. A systematic approach to evaluation is lacking. This would enable DFCs to be consistent in how they demonstrate progress and how they enable people living with dementia to live well.

Introductioncare home residents have high healthcare needs not fully met by prevailing healthcare models. This study explored how healthcare configuration influences resource use.Methodsa realist evaluation using qualitative and quantitative data from case studies of three UK health and social care economies selected for differing patterns of healthcare delivery to care homes. Four homes per area (12 in total) were recruited. A total of 239 residents were followed for 12 months to record resource-use. Overall, 181 participants completed 116 interviews and 13 focus groups including residents, relatives, care home staff, community nurses, allied health professionals and General Practitioners.Resultscontext-mechanism-outcome configurations were identified explaining what supported effective working between healthcare services and care home staff: (i) investment in care home-specific work that legitimises and values work with care homes; (ii) relational working which over time builds trust between practitioners; (iii) care which ‘wraps around’ care homes; and (iv) access to specialist care for older people with dementia. Resource use was similar between sites despite differing approaches to healthcare. There was greater utilisation of GP resource where this was specifically commissioned but no difference in costs between sites.Conclusionactivities generating opportunities and an interest in healthcare and care home staff working together are integral to optimal healthcare provision in care homes. Outcomes are likely to be better where: focus and activities legitimise ongoing contact between healthcare staff and care homes at an institutional level; link with a wider system of healthcare; and provide access to dementia-specific expertise.

Background: Care homes are the institutional providers of long-term care for older people. The OPTIMAL\ud study argued that it is probable that there are key activities within different models of health-care provision\ud that are important for residents’ health care.

Objectives: To understand ‘what works, for whom, why and in what circumstances?’. Study questions\ud focused on how different mechanisms within the various models of service delivery act as the ‘active\ud ingredients’ associated with positive health-related outcomes for care home residents.

Methods: Using realist methods we focused on five outcomes: (1) medication use and review; (2) use of\ud out-of-hours services; (3) hospital admissions, including emergency department attendances and length of\ud hospital stay; (4) resource use; and (5) user satisfaction. Phase 1: interviewed stakeholders and reviewed\ud the evidence to develop an explanatory theory of what supported good health-care provision for further\ud testing in phase 2. Phase 2 developed a minimum data set of resident characteristics and tracked their care\ud for 12 months. We also interviewed residents, family and staff receiving and providing health care to residents.\ud The 12 study care homes were located on the south coast, the Midlands and the east of England. Health-care\ud provision to care homes was distinctive in each site.

Findings: Phase 1 found that health-care provision to care homes is reactive and inequitable. The realist\ud review argued that incentives or sanctions, agreed protocols, clinical expertise and structured approaches to\ud assessment and care planning could support improved health-related outcomes; however, to achieve change NHS professionals and care home staff needed to work together from the outset to identify, co-design and\ud implement agreed approaches to health care. Phase 2 tested this further and found that, although there\ud were few differences between the sites in residents’ use of resources, the differences in service integration\ud between the NHS and care homes did reflect how these institutions approached activities that supported\ud relational working. Key to this was how much time NHS staff and care home staff had had to learn how to\ud work together and if the work was seen as legitimate, requiring ongoing investment by commissioners\ud and engagement from practitioners. Residents appreciated the general practitioner (GP) input and, when\ud supported by other care home-specific NHS services, GPs reported that it was sustainable and valued work.\ud Access to dementia expertise, ongoing training and support was essential to ensure that both NHS and care\ud home staff were equipped to provide appropriate care.

Limitations: Findings were constrained by the numbers of residents recruited and retained in phase 2 for\ud the 12 months of data collection.

Conclusions: NHS services work well with care homes when payments and role specification endorse the\ud im...

BackgroundThere has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia.MethodsThe data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months,ResultsAcross the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes.ConclusionFor people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings.

BackgroundThe ABC End of Life Education Programme trained approximately 3000 care home staff in End of Life (EoL) care. An evaluation that compared this programme with the Gold Standards Framework found that it achieved equivalent outcomes at a lower cost with higher levels of staff satisfaction. To consolidate this learning, a facilitated peer education model that used the ABC materials was piloted. The goal was to create a critical mass of trained staff, mitigate the impact of staff turnover and embed EoL care training within the organisations. The aim of the study was to evaluate the feasibility of using a train the trainer (TTT) model to support EoL care in care homes.MethodsA mixed method design involved 18 care homes with and without on-site nursing across the East of England. Data collection included a review of care home residents’ characteristics and service use (n = 274), decedents’ notes n = 150), staff interviews (n = 49), focus groups (n = 3), audio diaries (n = 28) and observations of workshops (n = 3).ResultsSeventeen care homes participated. At the end of the TTT programme 28 trainers and 114 learners (56 % of the targeted number of learners) had been trained (median per home 6, range 0–13). Three care homes achieved or exceeded the set target of training 12 learners. Trainers ranged from senior care staff to support workers and administrative staff. Results showed a positive association between care home stability, in terms of leadership and staff turnover, and uptake of the programme. Care home ownership, type of care home, size of care home, previous training in EoL care and resident characteristics were not associated with programme completion. Working with facilitators was important to trainers, but insufficient to compensate for organisational turbulence. Variability of uptake was also linked to management support, programme fit with the trainers’ roles and responsibilities and their opportunities to work with staff on a daily basis.ConclusionWhen there is organisational stability, peer to peer approaches to skills training in end of life care can, with expert facilitation, cascade and sustain learning in care homes.

Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia.

Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experience of living in a DFC. Two-hundred and forty people living with dementia completed a cross-sectional survey in six DFCs across England. Around half of respondents reported they were aware they were living in a DFC. Being aware of living in a DFC was associated with taking part in leisure activities ( p = 0.042), community centre attendance ( p = 0.009), being involved in organised activities or groups ( p < 0.001), feeling understood ( p = 0.008), and feeling valued for their own contributions to the community ( p = 0.002). This study illustrates the contribution that surveys can make in facilitating the expression of views and experiences of people living with dementia. Awareness of living within a DFC is associated with greater involvement in, and belonging to, the wider community.