Search

Peer reviewed: True, Funder: National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE), OBJECTIVES: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England. METHODS: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. RESULTS: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs. CONCLUSIONS: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice.

Within child welfare systems, the issue of parental alcohol misuse (PAM) and the responsibility for supporting children affected by PAM impacts on multiple health and social care services. An innovation pilot project (IPP) was set up to reduce the fragmentation between services and to help identify children affected by PAM. The current study presents findings regarding the IPP, examining its implementation, the service delivery, and the perceived impact for family members. Qualitative data were collected from 41 participants. This included interviews with alcohol-misusing parents (n = 13), affected adult family members (n = 5), and children affected by PAM (n = 9). Two focus groups and three one-to-one interviews were conducted with project workers (n = 7) and multi-agency service managers (n = 7). Data were analysed thematically relating to three main themes: (1) innovation in team composition and multi-disciplinary team working, (2) innovative ways of working, and (3) the benefits of a whole-family approach. The findings highlighted the importance of time for the team to ‘bed in’ and come together under one structure, a focus and oversight on whole-family care, and the importance of offering early, targeted, and flexible interventions to prevent crisis points and manage the consequences of PAM. Consideration will need to be given to joint commissioning to strengthen family-focused support.

Background Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement. Methods This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters. Findings All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and ‘ad hoc’ conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs. Conclusion The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

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

Third sector dementia support is characterised by wide variation and a heavy reliance on volunteer engagement. While there has been a growth in the reach and diversity of different schemes, their short-term funding results in a loss of networks, collaborations and local knowledge. This practice paper reflects on strengthening community-based dementia support and care via public and third sector partnerships. National and local data sources could help charities and commissioners begin to identify inequalities of provision.

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 sub-sample (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.

Context: The work presented in this paper was undertaken during the first three months of the COVID-19 crisis in the UK.Objectives: The project is aimed to respond to questions and concerns raised by front-line care staff during this time, by producing research-based ‘Top Tips’ to complement emerging COVID-19 policy and practice guidelines.Methods: Eight rapid, expert reviews of published, multidisciplinary research evidence were conducted to help answer care home workers’ questions about ‘how’ to support residents, family members and each other at a time of unprecedented pressure and grief and adhere to guidance on self-distancing and isolation. A review of the emerging policy guidelines published up to the end of April 2020 was also undertaken.Findings: The rapid reviews revealed gaps in research evidence, with research having a lot to say about what care homes should do and far less about how they should do it. The policy review highlighted the expectations and demands placed on managers and direct care workers as the pandemic spread across the UK.Implications: This paper highlights the value of working with the sector to co-design and co-produce research and pathways to knowledge with those who live, work and care in care homes. To have a real impact on care practice, research in care homes needs to go beyond telling homes ‘what’ to do by working with them to find out ‘how’.

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.

The detailed reviews, interviews and subsequent longitudinal case studies structured around a unifying realist analytical framework allowed us to establish a theory of commissioning for health care provision to care homes which proposes health services will work better when: staff are explicitly tasked to work with care homes at an institutional level as well as individual residents; healthcare and care home staff are empowered to co-design their working models; where explicit expertise in dementia care is available; the role of GP as a medical care provider is supported by access to a wider array of services; and they incorporate care management. There was no evidence from our study that a short term focus on avoiding admissions to acute hospitals from care homes added any value to service specification or care delivery.

This discussion paper considers the currently evolving roles of dementia champions and describes an initiative designed to support their activities. The aim of this initiative was to establish a county-wide group that has a shared group identity and sufficient critical mass that is able to identify and implement dementia training and development needs for the health and social care workforce. The approach used to achieve this aim was a Dementia Champion Community of Practice Project, which involved dementia leads in various NHS Trusts. Whilst this approach might be effective at practitioner level, the Dementia Champion Community of Practice Project experience suggests that if such initiatives are to be sustainable they need to be strategically placed within networks that can bring together service providers, educators and commissioners.

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.

South Africa's informal economy absorbs approximately one-quarter of the labour force of 15 million people and is therefore the fastest growing sector of employment. Street-based trading constitutes a major subsector within the informal economy and is continuously expanding through unrelenting proliferation of survivalist micro-enterprises. However, few organisations that support enterprises are accessible or appropriate to survivalist and informal sector micro-enterprises. Interviews were conducted with 98 Pietermaritzburg street-based traders and ten KwaZulu-Natal service providers to determine service provision requirements. The results are compared with findings of four international studies. The findings suggest that for survivalist enterprises to benefit from entrepreneurial education and training services, obstacles with regard to South African traders' understanding of entrepreneurship and cultural limitations to enterprise growth should be overcome. Service institutions also require incentives to...

To further develop the programme theory, three geographically discrete areas were identified with models of health care emphasising respectively: expertise in care of older adults organised around the care home; incentive-driven care using general practitioners (GPs) as co-ordinators; and mixed provision typical of usual UK care delivery. 242 residents from 12 care homes had baseline health status described using the InterRAI-LTC and their healthcare resource use and associated costs over 12 months collated. Interviews and focus groups with 181 health and social care professionals, residents and families described the care received. Healthcare costs per resident were greatest where provision was ad hoc and mixed. GP contacts and costs were greater where incentives emphasised GP contact. The most positive accounts were of models which recognised the pivotal role of homes in healthcare delivery, supported effective relational working between health and social care staff and allowed GPs to focus on medical care.

In a retrospective study 62 patients, who fulfilled the ICD-8/9 criteria for obsessive-compulsive disorder (OCD), were followed up. Besides an assessment of the cross-sectional symptomatology of OCD and depression, the long-term course of OCD and its relationship to depression were investigated. Five courses of OCD could be differentiated: continuous and unchanging (27.4%); continuous with deterioration (9.7%); continuous with improvement (24.4%); episodic with partial remission (24.2%), and episodic with full remission (11.3%). There was no difference between primary or secondary depression on the prognosis of OCD, and there was also no difference between the continuous or episodic course with regard to primary or secondary depression. Our results may be biased by the fact that we selected a sample of OCD and not primarily major depressive patients.