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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.

Recent research on young onset dementia (formal diagnosis at age

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.

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.\ud \ud OBJECTIVE: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions.\ud \ud 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. RESULTS: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. \ud \ud CONCLUSION: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care.

Purpose – People with dementia require care at home, in care homes and in hospitals, which has implications for the current and future workforce in health and social care. To inform regional workforce development planning in dementia care, Health Education East of England commissioned an organisational audit of current dementia training at NHS Trusts and in social care across Hertfordshire and Bedfordshire. The paper aims to discuss this issue. Design/methodology/approach – Qualitative methods and non-probability purposive sampling were used for recruitment and data collection. The audit included NHS Trusts, local authorities, clinical commissioning groups, and health and social care organisations involved in commissioning and providing dementia education and training in the two counties. Findings – Whilst there was considerable investment in dementia awareness training, learning was not targeted, assessed or structured to ensure on-going professional development. Practical implications – This has implications for workforce development and career-progression for staff responsible for the care of older people with dementia. Conclusion: if a future workforce is expected to lead, coordinate, support and provide dementia care across health and social care, a qualifying curriculum could play a critical part in ensuring quality and consistency of approach and provision. Originality/value – This paper makes a timely contribution to discussions on the skills and competencies needed to equip the future workforce for dementia care across health and social care.

Objectives: The dementia‐friendly community (DFC) initiative was set up to enable people living with dementia to remain active, engaged, and valued members of society. Dementia prevalence varies nationally and is strongly associated with the age and sex distribution of the population and level of social deprivation. As part of a wider project to evaluate DFCs, we examined whether there is a relationship between provision of DFCs and epidemiological need. Methods: Dementia‐friendly communities were identified through the formal recognition process of DFC status by the Alzheimer's Society and mapped against areas defined by English Clinical Commissioning Groups. We tested whether provision of a DFC was associated with: (1) dementia prevalence, (2) number of known cases, and (3) known plus estimated number of unknown cases. Results: Of the 209 English Clinical Commissioning Group areas, 115 had at least one DFC. The presence of a DFC was significantly associated with number of known dementia cases (mean difference = 577; 95% CI, 249 to 905; P = 0.001) and unknown dementia cases (mean difference = 881; 95% CI, 349 to 1413; P = 0.001) but not prevalence (mean difference = 0.03; 95% CI, −0.09 to 0.16; P = 0.61). This remains true when controlling for potential confounding variables. Conclusions: Our findings suggest that DFC provision is consistent with epidemiological‐based need. Dementia‐friendly communities are located in areas where they can have the greatest impact. A retrospective understanding of how DFCs have developed in England can inform how equivalent international initiatives might be designed and implemented.

© The Author(s) 2018. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. Introduction: care home residents have high healthcare needs not fully met by prevailing healthcare models. This study explored how healthcare configuration influences resource use. Methods: a 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. Results: context-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. Conclusion: activities 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.

BackgroundCare homes are the institutional providers of long-term care for older people. The OPTIMAL study argued that it is probable that there are key activities within different models of health-care provision that are important for residents’ health care.ObjectivesTo understand ‘what works, for whom, why and in what circumstances?’. Study questions focused on how different mechanisms within the various models of service delivery act as the ‘active ingredients’ associated with positive health-related outcomes for care home residents.MethodsUsing realist methods we focused on five outcomes: (1) medication use and review; (2) use of out-of-hours services; (3) hospital admissions, including emergency department attendances and length of hospital stay; (4) resource use; and (5) user satisfaction. Phase 1: interviewed stakeholders and reviewed the evidence to develop an explanatory theory of what supported good health-care provision for further testing in phase 2. Phase 2 developed a minimum data set of resident characteristics and tracked their care for 12 months. We also interviewed residents, family and staff receiving and providing health care to residents. The 12 study care homes were located on the south coast, the Midlands and the east of England. Health-care provision to care homes was distinctive in each site.FindingsPhase 1 found that health-care provision to care homes is reactive and inequitable. The realist review argued that incentives or sanctions, agreed protocols, clinical expertise and structured approaches to 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 implement agreed approaches to health care. Phase 2 tested this further and found that, although there were few differences between the sites in residents’ use of resources, the differences in service integration between the NHS and care homes did reflect how these institutions approached activities that supported relational working. Key to this was how much time NHS staff and care home staff had had to learn how to work together and if the work was seen as legitimate, requiring ongoing investment by commissioners and engagement from practitioners. Residents appreciated the general practitioner (GP) input and, when supported by other care home-specific NHS services, GPs reported that it was sustainable and valued work. Access to dementia expertise, ongoing training and support was essential to ensure that both NHS and care home staff were equipped to provide appropriate care.LimitationsFindings were constrained by the numbers of residents recruited and retained in phase 2 for the 12 months of data collection.ConclusionsNHS services work well with care homes when payments and role specification endorse the importance of this work at an institutional level as well as with individual residents. GP involvement is important but needs additional support from other services to be sustainable. A focus on strategies that promote co-design-based approaches between the NHS and care homes has the potential to improve residents’ access to and experience of health care.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Background The 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. Methods A 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). Results Seventeen 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. Conclusion When 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.