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Despite apparent need, many older people with cognitive impairment and/or mental health needs do not fully engage with social care. This can manifest in different ways, including passive or aggressive attempts to avoid or repel care workers. However, little is known about how to support such individuals in their own homes and deliver effective care. Against this background, we undertook a scoping review with a view to developing a preliminary theory of change suggesting how care might be modified to engage this client group. The most recent search was conducted on 21/04/21. Papers were included if they (i) focused on older people (65+) living at home with social care needs and (ii) described difficulties/problems with the provision/receipt of social care associated with individuals' mental health needs. Twenty‐six citations were identified through electronic database searches and reference screening, and the results were charted according to key theory of change concepts (long‐term outcomes, preconditions, interventions, rationale and assumptions). All the included papers were related to people with dementia. Four subgroups of papers were identified. The first highlights those external conditions that make it more likely an intervention will be successful; the second describes specific interventions to engage older people who by virtue of their mental health needs have not engaged with social care; the third explores what services can be done to increase service uptake by older people with mental health needs and their caregivers more generally; and the fourth details theoretical approaches to explaining the behaviour of people with dementia. Each provides information that could be used to inform care delivery and the development of interventions to improve engagement with health and social care for these individuals. The study concludes that different framing of engagement difficulties, such as that offered through positioning theory, may assist in future service design. [ABSTRACT FROM AUTHOR]

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life-limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety-eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty-six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty-five papers advocated person-centred support for people with complex needs, but no well-supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho-geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs. [ABSTRACT FROM AUTHOR]

The decline of language and communication abilities is common among people living with dementia and impacts on many areas of everyday life, including active participation in social activities and decision‐making. Despite a growing body of supporting evidence for approaches that address language and communication decline in dementia, the concept of communication rehabilitation is largely neglected in this population. This paper reports on the content validation of a novel tool, the Communication Support Needs Assessment Tool for Dementia (CoSNAT‐D). The tool has been developed to assist in the initial identification of communication difficulties and related support needs of people living with dementia. Importantly, the CoSNAT‐D is the only available tool that takes a three‐way informed approach, considering the view of the person living with dementia, their carer and an administering healthcare professional. Content validity was established between September and December 2018 using a modified Delphi approach. An international expert panel rated 32 items of a face‐validated item pool regarding their importance and relevance through an iterative feedback process. Consensus was pre‐determined at 70% of agreement for both importance and relevance of an item. Data were analysed using descriptive statistics and qualitative content analysis of comments provided in each round. Twenty‐eight experts working in dementia, language and communication participated in the Delphi survey. Qualitative analysis resulted in the addition of five items, of which three reached the required consensus in Round 3. Consensus was established for 35/37 items in three rounds. The pilot version of the CoSNAT‐D demonstrates adequate content validity and face validity. The use of the CoSNAT‐D may assist a range of healthcare professionals in the decision‐making process about appropriate next management steps, and thereby improve the care path for people with dementia and language and communication impairment. The establishment of further psychometric properties is warranted. [ABSTRACT FROM AUTHOR]

This scoping review comprehensively describes evidence of using peer support to assist informal carers of individuals with dementia (any type). A systematic search of 11 databases (CINAHL, Cochrane Library, Medline, Embase, PsychInfo, Web of Science, Scopus, Science Direct, ProQuest, TRIP and PubMed) was conducted for research published between 2007–2017 focussing on informal dementia carers, and research designs with interventions incorporating or consisting exclusively of peer support. Authors worked independently to screen retrieved articles, review applicability and extract data. Thirty‐six research papers (representing 28 original studies) were identified, from these, two modes of delivery were demonstrated: 12 studies provided the intervention online, and the remainder face‐to‐face. The review indicated that peer support is of potential benefit to carers if it is delivered via either mode. It is not clear what components may or may not be effective as results provided a mixed landscape of differing intervention effectiveness due to the wide variation in outcome measurements. Trial design using a multi‐component intervention was the predominant choice, with the most common components being Information Sharing and Non‐Healthcare Professional Support for both delivery modes. The burden/anxiety/depression compendium and health and well‐being were the most frequently measured outcomes; perceived level of support was one of the least. The peer support interventions identified included various components, demonstrating no true best practice model. Nonetheless, they can be offered successfully online or face‐to‐face. This provides a unique opportunity to develop and supply tailored peer support interventions for informal dementia carers to ensure their specific needs are met. Further work is required to construct and evaluate the effectiveness of targeted peer‐led support whether online or face‐to‐face to meet the individual needs of dementia carers. [ABSTRACT FROM AUTHOR]

Dementia affects majority of older residents in nursing homes and physiotherapists are regularly involved with this population. However, little is known about the role of physiotherapists who treat residents with dementia in nursing homes. The aim of this paper was to report on an interpretivist qualitative exploration of the perceptions of both the providers of and referrers to domiciliary physiotherapy for residents with dementia in nursing homes in London. In 2015, we conducted semi‐structured interviews with 10 purposively sampled participants – two were providers of physiotherapy for residents with dementia in nursing homes, five were referrers to these providers and three occupied dual roles. A thematic analysis of the verbatim transcripts identified three main themes. First were perceptions of a multifaceted but unclear role, focused on both conventional 'physical' physiotherapy interventions and specialist care, the latter being reliant on knowledge and confidence that physiotherapists did not always feel they possessed. Second were the stated challenges to the role, including the focus and organisation of the nursing home setting, with perceived lack of emphasis on rehabilitation; the progressive and demanding nature of dementia itself; a lack of continuity of nursing home and visiting health professional staff with associated need to entrust physiotherapy intervention to multiple others and the final challenge was the difficulty measuring impact. Third, despite the challenges, enablers of the role were experienced, namely collaborative working and positive previous experiences of referrers. Joining these themes were underpinning concepts of complexity and uncertainty in relation to the physiotherapy role in this setting. This paper highlights a need for enhanced collaborative working in clinical practice, enabled at organisational level, to help address some of the uncertainties expressed around the physiotherapists' role with residents with dementia in nursing homes and thereby enable improvements to processes and outcomes of their interventions. [ABSTRACT FROM AUTHOR]

Case management is a complex intervention aimed at addressing a variety of health needs of people in their social environment. Case management for people with dementia is often poorly defined and insufficiently described. The crucial process steps are often not well understood. We aim to map and compare the key components, processes and contextual factors of case management programmes for dementia and to explore aspects of the interventions' generalisability. Our search covered the databases PubMed, CINAHL, Cochrane and GeroLit, as well as policy papers from international organisations. We included qualitative, quantitative and mixed‐methods studies in the English or German language that was published between 1999 and 2020. The programmes were analysed according to programme characteristics, case management intervention and the structural and processing conditions. We identified 67 studies dealing with 25 programmes. Approximately half of the programmes were investigated in randomised controlled trials, two programmes used a mixed‐methods design and the remaining were the subject of pre‐post cohort studies. Participants in the studies were predominantly dyads of people with dementia and their informal caregivers. About half of the programmes reported a theoretical framework. All the programmes were derived from case management approaches or referred to such approaches. Despite huge differences in implementation, all the programmes covered the case management steps. In 14 out of 25 programmes, case management was carried out without additional intervention, the other programmes provided mainly education and training for informal caregivers. Costs of the case management interventions were stated in more than half of the programmes.The effectiveness and generalisability of dementia‐specific case management interventions could be enhanced if the framework introduced in the review was used in the future by policy, practice and research. [ABSTRACT FROM AUTHOR]

The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly, there is growing policy and practice interest in short breaks provision to address the diversity of carer break needs and preferences and deliver meaningful outcomes for carers and those they support. This paper reports findings from qualitative staff interviews that offered strategic and operational insights into short breaks provision. It presents a dynamic model of the short break landscape in a region of Wales, describing factors shaping local and regional decision‐making. The model identifies key challenges (barriers) and opportunities (enablers) that shape the planning, commissioning and delivery of bespoke short breaks for spousal carers and their partner living with dementia. Through highlighting the interplay between complex context‐specific processes and contingences, the model informs initial theory development in short breaks provision. [ABSTRACT FROM AUTHOR]

Carers of people with dementia can experience reduced health and well‐being, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the United Kingdom dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in‐depth interviews with carers of people with dementia (n = 35) and analysed thematically using the framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman's model of continuity of care (Freeman et al., Continuity of care, 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt 'supported' in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers' reports of feeling supported. Specialist nurses are well placed to provide this continuity. [ABSTRACT FROM AUTHOR]

Despite the benefits of utilising community‐based care services (CBS) for people with dementia and their caregiver being well established, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural and logistical factors effecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one's own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited. This paper explores internal emotional barriers on caregivers' use of CBS within the Irish Healthcare System. Professional Healthcare Providers were also interviewed as a preliminary indicator of their awareness of these internal emotional barriers and their impact on caregivers' use of CBS. Using interpretive description methodology, interviews with 20 caregivers and fourteen dementia professional healthcare providers were transcribed and a thematic analysis methodology applied to illuminate themes/patterns within participants' subjective perceptions of caregivers emotional barriers to using CBS. Four themes emerge: reluctance to question general practitioner (GP) authority; embarrassment during level of care requirement reviews; sense of obligation to provide all care; and fear of stigma. Caregivers interviewed were reluctant to communicate concerns with professional healthcare providers (PHPs), thereby reducing the PHP's awareness of these barriers and delaying/preventing use of CBS. As key gatekeepers within the care pathway, GPs should address the uneven power dynamic with the caregiver through user‐centred models of care, which actively encourage open dialogue, and receive training to identify the indicative behaviours of internal emotional barriers and empower the caregiver to communicate their feelings/concerns directly. [ABSTRACT FROM AUTHOR]

Major transitions in older people's lives can give rise to multifaceted forms of social exclusion, with subsequent impacts for later life health and well‐being. With place now a central concept within policy on ageing and community care, there is the potential that it may offer new pathways to support older people undergoing these critical life transitions (CLTs). However, how policy and practice stakeholders working with and on behalf of these population groups understand, conceptualise and capitalise on the involvement of place in CLTs has not been investigated. This paper aims to address this deficit and explores the perspectives of key national and local actors on three CLTs—dementia, bereavement and forced migration—and their relationship with place and exclusion. The analysis involved 18 semi‐structured interviews with stakeholders from policy, practice and advocacy spheres related to the CLTs and ageing in general. Interviews highlighted the differences across stakeholders in perceived exclusionary impacts, and the different degrees to which place is conceptualised in relation to these transitions. Findings illustrate the lack of a holistic policy approach to the needs of older people experiencing CLTs that impedes our capacity to truly harness place in supporting older people. The article concludes by arguing for a more nuanced reconstruction of place and its meanings in the context of CLTs. [ABSTRACT FROM AUTHOR]

This paper reports on data collected in 2011 from a national study about the operation of the best interests principle, a key feature of the Mental Capacity Act ( MCA) 2005 for England and Wales. The objective was to provide a picture of current professional practices in best interests decision-making. Four contrasting sample sites were selected, in which National Health Service trusts, social care and other organisations were recruited to participate. A multimethod design was followed, including an online survey with 385 participants, followed by qualitative research through a telephone survey of 68 participants, and face-to-face semi-structured interviews following up 25 best interests cases, with different perspectives on the process in 12 of those cases. The current paper reports only on the qualitative findings. The findings indicate that the MCA was successful in providing a structure for these practitioners, and that the five principles of the MCA were in general adhered to. A variety of perceived risks led to best interests processes being undertaken, and a typical scenario was for a period of hospitalisation or ill health to trigger a best interests decision process about a social care and or a life decision. The study supported previous research in finding the notion of capacity the most difficult aspect of the MCA, and it provides evidence of some specific capacity assessment practices, including problematic ones relating to 'insight'. Best interests decisions were often made by consensus, with practitioners taking on different roles within the process. Meetings played a key part, but other ways of involving people lacking capacity and significant others were also important. It was recommended that the issues highlighted in this research could be clarified further in the Code of Practice, or within risk guidance. [ABSTRACT FROM AUTHOR]

Dementia-friendly communities ( DFCs) are a UK policy initiative that aims to enable people with dementia to feel supported and included within their local community. Current approaches to DFC creation rely on stakeholder involvement, often requiring volunteer assistance. There is though a lack of evidence that examines the reality of achieving this. This paper critically assesses the challenges and strategies for achieving stakeholder involvement in DFCs. The evidence base is drawn from an inter-agency project funded by the National Health Service in the South of England where seven DFCs were developed by steering group partners and four part-time project workers ( PWs). Data from the independent evaluation undertaken in the first year (2013-2014) of the project were analysed: 14 semi-structured interviews and a focus group examined PWs' experiences; while progress and key milestones are determined from monthly progress forms, good news stories, locality steering group minutes and press releases. Analysis was undertaken using a directed content analysis method, whereby data content for each locality was matched to the analytical framework that was drawn from Alzheimer's Society guidance. Challenges to achieving stakeholder involvement were identified as: establishing networks and including people representative of the local community; involving people affected by dementia; and gaining commitment from organisations. Strategies for achieving stakeholder involvement were recognised as: a sustainable approach; spreading the word; and sharing of ideas. By highlighting these challenges and the approaches that have been used within communities to overcome them, these findings form the foundation for the creation of DFC initiatives that will become embedded within communities. Stakeholder involvement is unpredictable and changeable; therefore, reliance on this approach questions the long-term sustainability of DFCs, and must be considered in future policies designed to enhance quality of life for people affected by dementia. [ABSTRACT FROM AUTHOR]

Australians want to live at home as they age and seek support from health and social care services to achieve this. The consumer driven market‐based approach to community services in Australia has resulted in an increases in user's expectations of quality. What constitutes a quality service from the consumer's perspective is an important agenda to understand as the focus of care delivery moves to the domiciliary setting. This paper presents one aspect from a grounded theory PhD study, the aim of which was to understand the lived experience of receiving services in the home and its impact on the meaning of home. Participants were 11 people with dementia and 18 family supporters living in the state of Victoria, Australia. Data were collected between 2015 and 2017 through multiple interviews, photographic images, field notes and memos. NVIVO 10 qualitative analysis software program was used to support constant comparative analysis. Using a grounded theory approach, this study found that the decision to engage with community services was driven by the need to maintain autonomy, self‐identity and home life. Participants sought quality services but discovered a dichotomy of positive and negative aspects in the way services were delivered. The most common reaction to the experience of poor‐quality care was to reflect on their expectations for care quality; and manage the reality of what was delivered. Team work and service responsiveness were positive characteristics but were offset by service limitations and inefficiencies caused by poor communication and poor staff retention. The interpersonal relationships that participants developed with staff was highlighted; trust was an important factor whereas unreliable, task orientated and poorly trained staff would be rejected. The implications for policy and practice are described. [ABSTRACT FROM AUTHOR]

Farm‐based day care for people with dementia is supposed to improve the participants quality of life by using activities and resources of the farm environment to promote mental and physical health. In this paper, we describe the characteristics of those attending farm‐based day care services in Norway and explore the association between individual and farm characteristics and the quality of life. A sample of 94 people with dementia who attended farm‐based day care was recruited from 25 farms between January 2017 and January 2018. The data collection was performed using standardized instruments. Information about the farms was retrieved from a former study. The association between the participants' quality of life and their individual and/or farm characteristics was examined with a linear multilevel regression model. The participants had a mean age of 76 years, 62% were men, and 68% had additional education after primary school. Most of them had mild (54.3%) or questionable dementia (18.3%). A few participants used antipsychotics (3.7%), tranquilizers (9.9%) and painkillers (13.6%), while a higher number used antidepressants (30.9%). Quality of life was associated with the experience of having social support (p =.023), a low score on depressive symptoms (p <.001), and spending time outdoors at the farm (p <.001). The variation between the farm‐based day care services in the participants' reported quality of life was related to time spent outdoors at the farm. In light of the present study, it seems as farm‐based day care is addressing people with dementia in an early stage, dominated by men, with quite good physical and medical condition. The strong association between quality of life and spending time outdoors underscores that facilitation for outdoor activity should be prioritized in all types of dementia care. [ABSTRACT FROM AUTHOR]

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience‐centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in‐depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person‐centred support services for the people living with dementia. [ABSTRACT FROM AUTHOR]

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non‐temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance. [ABSTRACT FROM AUTHOR]

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care‐giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision‐making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified. [ABSTRACT FROM AUTHOR]

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem. [ABSTRACT FROM AUTHOR]

This paper examines the healthcare needs of community‐dwelling older people living in Porto, Portugal, diagnosed with moderate or severe dementia, linked to functional dependency, cognitive decline, limitations in the activities of daily life, and frailty levels. A sample of 83 participants was recruited. Data were collected between 2013 and 2017. A sociodemographic questionnaire, the Clinical Dementia Rating (CDR), the Barthel Index (BI), the Lawton and Brody Instrumental Activities of Daily Living (IADL) Scale, and the Edmonton Frail Scale (EFS) were used. A set of 26 healthcare needs was defined to support the assessment. The Pearson chi‐square or Fisher's exact test (as appropriate) was used to examine the association of the needs (unmet and met) with the levels of dementia and frailty. Participants were diagnosed previously with moderate or severe dementia and benefited from a structured home‐care program. There was a high number rated as "severe dementia," "fully dependent," "severely or fully dependent in the activities of daily living (ADL)," and "severe frailty." There were statistically significant differences among needs identified in people with moderate or severe dementia and moderate or severe frailty. The most prevalent healthcare needs in the sample were food preparation, medication/taking pills, looking after their home, toilet use, sensory problems, communication/interaction, bladder, bowels, eating and drinking, memory, sleeping, and falls prevention. In particular, the study identifies a set of needs that are present simultaneously in both frailty and dementia stages. This study underlines that despite well‐structured home‐care programs for people with dementia, unmet health needs remain. Timely healthcare needs assessment may help professionals to avoid fragmented care and to tailor quality‐integrated interventions, including the emotional and psychological balance of the caregiver. [ABSTRACT FROM AUTHOR]

Dementia‐related wandering is exhibited by as many as 63% of people with dementia living in the community. There is strong evidence that people with dementia who wander are at risk of life‐threatening outcomes including injury from falls, exhaustion, weight loss, and becoming lost. Furthermore, carers have reported that fear of a person with dementia becoming lost contributes to them taking extreme measures in an attempt to maintain safety at home and there are few guidelines to direct care practices. Previous literature reviews of interventions to manage wandering have been inconclusive as the quality of research resulted in most studies being excluded. This narrative review aimed to report on the current state of wandering intervention science for people with dementia cared for in the community. An extensive search of articles and grey literature published between January 1999 and November 2017 was conducted and included quantitative studies that reported findings of nonpharmacological interventions for people with dementia living in the community that reported outcome measures of wandering characteristics (e.g., frequent ambulation, pacing, and boundary transgression). Eleven papers met the inclusion criteria, the majority of which were small nonrandomised studies or case studies with interventions that focused on: engaging the person with dementia in an activity, improving safety with environmental modifications, and technology to improve navigation or to monitor movement. While the strength of the evidence was low, the review has identified some promising interventions that carers of people with dementia could trial to reduce risky aspects of wandering, as well as identifying potential directions for future research. [ABSTRACT FROM AUTHOR]

This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as 'Tell me about what social participation means to you', and 'How did this change...'. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged. [ABSTRACT FROM AUTHOR]

Consumer-directed care (CDC) is increasingly widespread among aged care service options in Organisation for Economic Co-operation and Development (OECD) countries. However, the evidence base regarding the programmatic and contextual factors that affect the outcome of CDC interventions is surprisingly small. This paper reports on a self-directed care approach for older Australians with complex care needs. A multimethods longitudinal comparative cohort study was employed comprising 4 survey tools and 56 semi-structured interviews. Participation rates were around 20%. A total of 185 (98 in the intervention and 87 in the control group) older people and carers were recruited at baseline. Eleven months later, 109 participants (59 in the intervention and 50 in the control group) completed the repeat measure. Attrition rates were around 40%. Data collection occurred between July 2010 and April 2012. The data suggest that intervention group participants were likely to be more satisfied with the way they were treated (P = 0.013), their care options (P = 0.014), the 'say' they had in their care (P < 0.001), the information they received regarding their care (P = 0.012), what they were achieving in life (P = 0.031), that the services changed their view on what could be achieved in life (P = 0.020) and with their standard of living (P = 0.008). The evaluation suggests that while only a very small segment of older people is interested in a voucher or cash option, a substantially larger group would like to have greater say over and more direct access to their care, without, however, assuming administrative and financial responsibilities. The paper concludes that a stepped capacity-building approach to CDC may improve the acceptability of CDC to older people and generate synergies that improve older people's care outcomes. [ABSTRACT FROM AUTHOR]

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource-intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face-to-face and telephone interviews, Talking Mats© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person-centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co-ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield. [ABSTRACT FROM AUTHOR]

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities. [ABSTRACT FROM AUTHOR]

As identity and agency are central to the well-being of people with dementia, this paper explores whether their dialogue conveys a gendered sense of identity and agency. The author discusses whether they demonstrate not just a subjective sense of being but also an understanding of their relational selves. Findings are presented from a qualitative study in the North of England which examined the everyday decisions made by married couples when one partner had dementia. Ethnographic methods were used, including participant observation and interviews. While dialogical analysis usually centres on the subjective self, it was also used to examine intersubjectivity. Comparisons are made between the dialogue of women and men in order to draw conclusions about the gendered nature of identity and agency. The study found that the women and men defined themselves according to their social and gender identities. The literature had suggested that agency might be a gendered concept and the study confirmed that men were somewhat individualistic and rational in their concerns, whereas women were more relational and even spiritual. Yet, women and men demonstrated emotional reflexivity. As national and international health policy prioritises living well with dementia, more systematic attention should be given to the role of gender in influencing well-being in dementia. Health and social care staff should recognise and facilitate the gender identity and related social roles of people with dementia (e.g. parent, carer and worker) in order to enhance their quality of life. [ABSTRACT FROM AUTHOR]

The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established 'coping' as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In‐depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed 'social coping' (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term. [ABSTRACT FROM AUTHOR]

Extra care housing aims to meet the housing, care and support needs of older people, while helping them to maintain their independence in their own private accommodation. It has been viewed as a possible alternative, or even a replacement for residential care. In 2003, the Department of Health announced capital funding to support the development of extra care housing and made the receipt of funding conditional on participating in an evaluative study. This paper presents findings on the characteristics of the residents at the time of moving in, drawing on information collected from the 19 schemes in the evaluation, and a recent comparable study of residents who moved into care homes providing personal care. Overall, the people who moved into extra care were younger and much less physically and cognitively impaired than those who moved into care homes. However, the prevalence of the medical conditions examined was more similar for the two groups, and several of the schemes had a significant minority of residents with high levels of dependence on the Barthel Index of Activities of Daily Living. In contrast, levels of severe cognitive impairment were much lower in all schemes than the overall figure for residents of care homes, even among schemes designed specifically to provide for residents with dementia. The results suggest that, although extra care housing may be operating as an alternative to care homes for some individuals, it is providing for a wider population, who may be making a planned move rather than reacting to a crisis. While extra care supports residents with problems of cognitive functioning, most schemes appear to prefer residents to move in when they can become familiar with their new accommodation before the development of more severe cognitive impairment. [ABSTRACT FROM AUTHOR]

There has been global neglect of service users’ and carers’ experiences of dementia care provision in rural areas. The present paper draws on a qualitative study of service provision for people with dementia and their carers in remote and rural Scotland. It draws on interviews with 15 people with dementia and 16 carers to explore their views about health and social dementia care service provision in rural Scotland. A further 14 carers of people with dementia participated in one of three focus groups. The paper discusses perceived gaps in services as well as positive aspects of dementia service provision which service users attribute to living in a rural area. The important issues this raises for the development of dementia care provision in rural areas are briefly discussed. [ABSTRACT FROM AUTHOR]

There is growing interest in eliciting the views of younger people with dementia (i.e. those under 65 years of age) within health and social care research. The often erroneous view that these individuals are not capable of expressing their views and experiences has now been seriously challenged. The present paper draws on the findings from 14 qualitative in-depth interviews with younger people with dementia conducted in the South-west of England, and considers some of the issues involved in interviewing people with dementia. Purposive and snowballing techniques were used to recruit participants. Data were transcribed and subjected to comparative textual analysis to index, code and analyse the data for emergent themes. Four major themes emerged: (1) the general experience of having dementia; (2) dementia diagnosis; (3) the importance of age; and (4) risk and danger issues. The results indicate that the majority of participants were articulate and insightful about their experiences and needs. The present paper concludes by arguing that the challenge for health and social care professionals is to engage with and consult such individuals about their experiences and what they want from dementia care services, and the authors consider some of the issues involved in interviewing people with dementia. [ABSTRACT FROM AUTHOR]

Abstract The Carers (Recognition and Services) Act 1995 came into force on 1 April 1996. It entitles carers who are providing substantial amounts of care on a regular basis to an assessment of their needs and ability to care. Local authorities are required to take the results of this assessment into account when making decisions about services. This paper reports the key findings of a two-year study, conducted in Wales, that evaluated the process and outcomes of assessments carried out under the auspices of the Carers Act. The findings offer insights to policy makers and practitioners and profile how care managers assess carers’ needs. In addition, the paper describes carers’ qualitative experiences of the assessment process and the difficulties care managers encounter in translating into practice the policy emphasis on supporting carers. It is suggested that separate carer assessments are not an established feature of care management practice and that care managers lack an explicit framework to direct the assessment of carers’ needs. [ABSTRACT FROM AUTHOR]

With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers ( N = 87) and recipient FCs ( N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being ( SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention ( N = 43) and at either 3- to 5 month or 10 month follow-up ( N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering. [ABSTRACT FROM AUTHOR]

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research. [ABSTRACT FROM AUTHOR]

After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers' failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised. [ABSTRACT FROM AUTHOR]

This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy – notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy – in facilitating their human rights to liberty and self-determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights. [ABSTRACT FROM AUTHOR]

This article reports on findings from a qualitative study, undertaken in England that explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore how a person’s gay or lesbian sexuality might impact upon their experience of providing care in this context. This paper reports on one theme that emerged from the wider study – carers’ experiences of ‘coming out’ to service providers. Respondents were recruited using ‘snowballing’ methods and the study employed semi-structured interviewing techniques. Data collection occurred over a protracted period (2003–2007), the time scale being determined by (the well documented) difficulties in recruiting respondents from this group of people. Data analysis was undertaken with the intent of developing common and contrary themes using a constant thematic comparative method. The results reported here demonstrate the ways in which carers mediated disclosures of their sexualities to health and social care service providers and, for some, their wider support network. For many carers, responses to these disclosures proved to be a critical issue and one that coloured their experience of providing care. Service providers’ reactions are demonstrated as being characterised by, at best, a broad acceptance of gay and lesbian people’s circumstances, through to a pervasive disregard of their needs. [ABSTRACT FROM AUTHOR]

The Mental Capacity Act 2005 introduced legal safeguards (which came into force in April 2009) aimed at protecting the liberty of people lacking capacity admitted to institutions in England and Wales. This paper discusses the adequacy of the Deprivation of Liberty Safeguards for protecting the liberty of residents in social care settings and the role of regulation in monitoring their implementation. In particular, the potential impact of planned unitary regulation on the regulator's ability to protect residents’ liberty is critiqued, centring on people with dementia living in care homes. It is suggested that the capacity of the safeguards to adequately protect the liberty of residents with dementia may be limited by under-recognition of the extent to which deprivation of liberty can actually occur in care homes, insufficient resourcing and a lack of critical independence in their proposed implementation. In addition, the planned contraction of regulation – especially a reduction in inspections – will constrain the regulator's ability to ensure that residents’ right to liberty is protected. The author concludes that the new model of regulation adopted by the UK government has prioritised economic efficiency over safeguarding the right to liberty of vulnerable residents in institutions. [ABSTRACT FROM AUTHOR]

The Mental Capacity Act 2005 came into force in England and Wales during 2007. The Act enshrines a legal right to autonomy (negative and positive) of people lacking decision-making capacity, such as people with dementia. This paper examines the extent to which the legislation promotes the social citizenship of people with dementia, focusing on its effectiveness in protecting liberty and promoting self-determination and in providing social rights to facilitate autonomy. In particular, the author considers the degree to which the Act will facilitate decision-making by people with dementia, centring on decisions relating to where to live (at home or in an institution). In addition, the historical detention (usually informal) of people with dementia in institutional care, and the role of the Act in promoting recognition of their right to liberty, is highlighted. However, the author points out that the civil rights to liberty and self-determination accorded under the Act – particularly the right to decide where to live – are restricted rights only, as the views of the person lacking capacity can be over-ridden by the decisions of others. In addition, the facilitation of these civil rights is constrained by a lack of access to social rights, particularly the availability of domiciliary and community services to avoid institutional admission. Consequently, whilst the legislation promotes the social citizenship of people with dementia, it has limited capacity to facilitate their full citizenship status. [ABSTRACT FROM AUTHOR]

This paper reports the findings of a scoping study designed to describe the evidence base with regard to housing provision for elderly people with dementia with the aim of identifying gaps in existing knowledge. This report from the scoping study findings covers studies of housing and accommodation in relation to dementia that have been published in the UK since the early 1980s, although we draw on limited aspects of overseas research to illuminate issues missing from the UK research agenda. The results reveal a significant number of research gaps in the UK context, most notably in relation to end-of-life care for people with dementia and the effectiveness of integrated and segregated facilities. UK policy regarding the development of extra-care housing also neglects the long-term future of people with dementia. A more robust evidence base will be required, combining a variety of methodological approaches, if UK dementia research is to contribute to future housing policy developments. [ABSTRACT FROM AUTHOR]

The development of community-based services for people with dementia brings new challenges for health and social care providers, not least that of sustaining an enthusiastic workforce who are motivated to provide care and support under potentially isolating and difficult conditions. The present paper, based on interview data gathered from a group of community-based dementia care workers, seeks to identify their sources of job satisfaction and reward. Interviews were conducted with seven workers at two points in time and the data were analysed using a case by theme matrix approach. The results indicate that there were high levels of job satisfaction amongst the group, which were enhanced by several factors, including: good organisational support; day-to-day autonomy; the ability to maintain relationships with people with dementia and their families; and staffs’ feelings of contributing to and improving the status and quality of life of people with dementia. Implications for workforce development are briefly considered. [ABSTRACT FROM AUTHOR]

Abstract The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term ‘dementia’ in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society. [ABSTRACT FROM AUTHOR]

Abstract Mental ill health is very common. Most people with mental health problems live in the community, and as many as 1.5 million people in the UK may be involved in caring for a relative or friend with a mental illness or some form of dementia. Recent legislation and policy initiatives such as the National Strategy for Carers, and the National Service Frameworks for Mental Health and Older People emphasise the importance of providing support for this particular group of carers. The present paper reports the findings of a scoping study to identify what the research tells us about the effectiveness and cost-effectiveness of interventions for the carers of people with mental health problems, and also where there are gaps in the knowledge base. Some 204 evaluation studies were included in the review, just 13 of which had an economic component. The majority of studies were conducted in the USA, and were aimed at carers of people with Alzheimer disease or other forms of dementia. Overall, there was a lack of strong evidence to support any specific interventions, although almost all studies were able to identify some positive outcomes of services provided. In contrast to the relatively narrow approach to effectiveness adopted in most of the studies reviewed, the contributors to a consultation exercise perceived this concept in a far more rounded and holistic way. For them, the process of service delivery was as important as the outcome. There was relatively little research evaluating interventions and services singled out in UK policy initiatives as potentially useful in supporting this group of carers, and further evaluation studies are needed. [ABSTRACT FROM AUTHOR]

Short breaks help maintain caring relationships, enabling people to remain living in their own homes and contributing significant economic benefit to public services. However, relatively little is known about the added social value generated by community-based short breaks. To address this evidence gap, we explored the feasibility of using a social return on investment (SROI) evaluation to explore a day support service in North Wales for people living with dementia and their unpaid carers. Following good practice for evaluating complex interventions, we developed a logic model based on the literature and interviews to understand the mechanisms and outcomes of the day support service. Using questionnaires, we quantified outcomes for the current service cohort, which included people living with dementia, unpaid carers, and paid companions. Seven people living with dementia, three unpaid carers, and four companions completed questionnaires. By following the SROI analysis approach, three key learning points were identified. The first was around ways to capture outcomes from all stakeholder subgroups expected to experience material change. The second concerned the importance of collecting longitudinal data. This included the need to consider how to adapt the SROI method to work with small populations. The third concerned how to value "maintenance" of wellbeing as well as improved wellbeing. [ABSTRACT FROM AUTHOR]

There is a growing literature on the subject of sexuality and an increased knowledge of sexuality and older people, but there is a dearth of information about sexuality and people with dementia, particularly those in residential care. The concern of this paper is with people with dementia; it also considers the impact of gender on their sexual expression. The expression of sexuality by people with dementia is an area which has been largely neglected by research, yet in practice appears to be of concern. The types and prevalence of sexual expression by people with dementia in residential care and staff's responses to such expression are examined. A postal questionnaire sent to managers of social work residential homes in one region in Scotland explored a number of different issues, including: the public versus private expression of sexuality by people with dementia, the public response versus the private feelings of managers to such expression, the influence of carer involvement on staff's responses, exploitation of one resident by another and sexual expression directed at staff by residents. Permeating all these was the issue of gender. The majority of homes were staffed predominantly by female managers and female care staff. Most residents were female yet the majority of incidents involving sexual expression, reported by managers, involved male residents directing their attention towards female staff or other residents. Female residents with dementia do express sexuality but numbers reported are considerably less with staff actions tending towards the protective. Some types of sexual expression appear to be of more concern than others, and some are reported to occur more frequently. [ABSTRACT FROM AUTHOR]

The health and well-being benefits of outdoor nature-based activity are increasingly recognised, but older people with cognitive impairment face significant barriers to access. The ENLIVEN project aims to promote access by gathering evidence and coproducing guidance for activity providers. As part of this project, we conducted a scoping review to characterise the types of outdoor nature-based activity for older people with dementia and other forms of cognitive impairment for which research evidence is available and the range of outcomes is examined. The protocol is available online. We systematically searched relevant databases from 1st January, 2009, to 20th October, 2022, and screened articles against the following criteria: participants were older people aged 65 and above with cognitive impairment arising from dementia or another health condition. The study described the formal provision of outdoor nature-based activity away from the person's usual place of residence, and at least one outcome of participation in the activity was evaluated. Twenty-eight articles met inclusion criteria, all focused on people with dementia. In most cases, participants were attending day care or living in residential care, and sample sizes ranged from 4 to 136. Activities fell into three groups: green day care (fifteen articles), equine-assisted interventions (seven articles), and community nature-based activities (six articles). Outcome domains explored were connection with nature, activity engagement, impacts on clinical symptoms, functional ability, physical, psychological and social health,, and quality of life. Outdoor nature-based activity can be offered as an opportunity for meaningful occupation to enrich daily life, as a framework for day care provision, or as an intervention to address clinical needs. The evidence base for green day care is relatively established, but the potential for addressing specific clinical needs remains to be explored. The paucity of evidence regarding community provision, especially for those not attending formal care settings, suggests the need for effective knowledge exchange to stimulate initiatives in this area. [ABSTRACT FROM AUTHOR]

Quality of life is an important outcome in older‐adult care. Measuring resident quality of life may offer ways to improve it and to improve quality of care. However, in the UK quality of life is rarely measured as a part of routine care. Our study aimed to understand the views of care home staff about using a quality of life instrument as a part of routine care in order to support its implementation into routine practice. In a qualitative study, we conducted 35 interviews with care home staff and two focus groups with four care home managers from three care homes in East Sussex, England. Data were collected between September 2015 and February 2016. Care staff and managers were aged on average 40 (SD = 12.2) and 43.7 (SD = 14.4) years and had worked in the care sector an average of 11.4 (SD = 10.2) and 23.7 (SD = 14.1) years, respectively. Participants were predominantly female and white British. Interviews and focus groups were analysed using thematic analysis. Findings identified two overarching themes of 'Perceived gains' and 'Implementation'. Overall, there was a lot of positivity towards using a quality of life instrument in routine practice. This positivity was an important feature in how the instrument was perceived as fitting into practice. Participants identified several barriers and discussed how to overcome them. Results from the study demonstrate that routine measurement of quality of life is positively received by care staff. They believed that measuring quality of life as a part of care practice could lead to improvements in resident quality of life, staff knowledge and understanding and care practices. The findings suggest that routinely measuring quality of life as a part of normal care could also have more far‐reaching effects on the provision of person‐centred care provided by care staff. [ABSTRACT FROM AUTHOR]

Older people with mental health needs and dementia often face difficulties with daily living and community participation, requiring the intervention of social care services. However, cognitive and emotional needs often mean that mainstream support is not appropriate. In England, mental health support workers may attempt to address these concerns, to prevent mounting care needs and the potential for institutional care. Yet, their work has not been researched to identify good practices and to understand the mechanisms through which they engage older people. A new qualitative study used semi‐structured interviews and focus groups with specialist support workers (n = 22), managers (n = 7), homecare staff (n = 4) and service users and carers (n = 6). The latter group were interviewed by co‐authors with lived experiences of dementia and care. Participants were recruited from mental health services, home care organisations and third‐sector agencies across the North of England in 2020–2021. The study identified three themes that described support worker activities. First, 'building trusting relationships' identified steps to establish the foundations of later interventions. Paradoxically, these may involve misleading clients if this was necessary to overcome initial reluctance, such as by feigning a previous meeting. Second, 're‐framing care' referred to how the provision of care was positioned within a narrative that made support easier to engage with. Care framed as reciprocal, as led by clients, and having a positive, non‐threatening description would more likely be accepted. Third, 'building supportive networks' described how older people were enabled to draw upon other community resources and services. This required careful staging of support, joint visits alongside workers in other services, and recognition of social stigma. The study was limited by constrained samples and covid context requiring online data collection. The study recommends that support workers have more opportunity for sharing good practice across team boundaries, and improved access to specialist training. [ABSTRACT FROM AUTHOR]

Post‐diagnosis young onset dementia (YOD) care is often fragmented, with services delivered across aged care, healthcare, and social care sectors. The aim of this project was to test the feasibility and potential effectiveness of a learning collaborative implementation strategy for improving the cross‐sector integration of care for people with YOD and to generate data to refine the implementation strategy for scaleup. We conducted a longitudinal mixed methods process evaluation and recruited one representative from three Australian aged care organisations, three disability care organisations and three organisations (n = 9) contracted to deliver care navigation services. One representative from each organisation joined a learning collaborative within their local area and completed a six‐module online education package incorporating written resources, webinars, collaboration and expert mentoring. Participants identified gaps in services in their region and barriers to care integration and developed a shared plan to implement change. Normalisation Process Theory was applied to understand the acceptability, penetration and sustainability of the implementation strategy as well as barriers and enabling factors. Dementia knowledge measured by the Dementia Knowledge and Awareness Scale was high among the professionals at the start of the implementation period (mean = 39.67, SD = 9.84) and did not change by the end (mean = 39.67, SD = 8.23). Quantitative data demonstrated that clinicians dedicated on average half of the recommended time commitment to the project. However, qualitative data identified that the learning collaborative strategy enhanced commitment to implementing integrated care and promoted action towards integrating previously disparate care services. Participant commitment to the project was influenced by their sense of obligation to their team, and teams that established clear expectations and communication strategies early were able to collaborate and use the implementation plan more effectively (demonstrating collective action). Teams were less likely to engage in the collective action or reflexive monitoring required to improve care integration if they did not feel engaged with their learning collaborative. Learning collaboratives hold promise as a strategy to improve cross‐sector service collaboration for people with YOD and their families but must maximise group cohesion and shared commitment to change. [ABSTRACT FROM AUTHOR]

The objective of this study was to estimate the joint effects of cognitive impairment and depressive symptoms on health‐related quality of life (HRQoL) and to explore the mediating role of disability among Chinese community‐dwelling older adults. A cross‐sectional study was conducted with 2525 community‐dwelling older adults aged ≥60 years and living in Shanghai, China in 2019. Participants were divided into four groups: (1) non‐depressed without dementia, (2) non‐depressed with probable MCI, (3) depressed without dementia and (4) depressed with probable mild cognitive impairment (MCI). HRQoL was assessed using the 36‐Item Short‐Form Health Survey. Cognitive impairment and depressive symptoms were evaluated with the AD8 and the Geriatric Depression Scale respectively. Activities of daily living (ADL) and instrumental activities of daily living (IADL) disability and other sociodemographic variables were also assessed. The results of this study showed that controlling for sociodemographic characteristics, significant differences in a physical component score (PCS) and a mental component score (MCS) of HRQoL were found across the four groups. Compared to those who were non‐depressed without dementia, older adults who were depressed with probable MCI reported the lowest level of PCS and MCS, followed by older adults who were depressed without dementia. Both ADL and IADL disabilities played mediating roles in the relationship between cognitive impairment and depressive symptoms and PCS. Based on this study, we suggest that the early detection and adequate management of depressive symptoms and cognitive status—as well as efforts to improve individuals' ability to manage their ADLs and IADLs—may help to maintain or improve their HRQoL. [ABSTRACT FROM AUTHOR]

Small‐scale models of dementia care are a progressive approach to improve care for people living with dementia. These models intend to provide a home‐like environment with a small number of residents in each living unit, easy access to services and facilities, a dedicated team of staff and flexible routines. This study was undertaken during the construction phase of a new village and provided a unique opportunity to explore expectations of the village among the local community. Twelve community members participated in two sequential online focus groups over a 2‐month period. Focus group discussions were recorded, transcribed and analysed using a reflexive thematic analysis approach. Knowledge of the village varied and was informed by familiarity with other village developments and local marketing about the new village. The findings indicate that the community expect the village to provide residents with optimum dementia care, a safe and enabling physical environment and a vibrant daily life where they are engaged in 'normal' activities. While participants expected the village to be self‐contained, they also anticipated strong connections with the wider community. Participants acknowledged that the community need dementia education to ensure these interactions are positive. Community expectations of a new village development for people living with dementia are largely positive and often idealistic. Organisations need to consider these expectations when developing new small‐scale facilities and be mindful of how they market these developments to foster realistic expectations. While community enthusiasm about dementia care is encouraging, education is needed to ensure the success of the model. [ABSTRACT FROM AUTHOR]