BackgroundThis paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.MethodsSystematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.ResultsOf 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.ConclusionsIn many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-015-0053-9) contains supplementary material, which is available to authorized users.
BackgroundThis scoping study aimed to identify how physical activity may benefit people with dementia; how and/or if current service provide these benefits; and what support they need to do so.MethodsMethods included an evidence review using literature; mapping current service provision through a survey; and in-depth interviews with a sample of service providers.ResultsThe 26 studies included in the review indicated the potential effectiveness of physical activity for people with dementia, including improvements in cognition and mood, behaviour and physical condition. Mechanisms of action and the link with outcomes were poorly defined and implemented.The mapping survey and related interviews showed that service providers were delivering a range of services broadly consistent with the scientific evidence. They tended to take a holistic view of possible benefits, and focused on enjoyment and well-being, more than specific cognitive, physical and behavioural outcomes highlighted in literature. Service providers needed more evidence based information and resources to develop services and realise their potential.ConclusionDespite potential benefits demonstrated in literature and practice, there is a need for further research to optimise interventions and to consider some neglected issues including delivery at home and in communities; impacts for carers; physical activities through ADLs; and individual needs. Studies are needed which take a more holistic approach to the effects of physical activity, and outcomes should be broader and include mental health and wellbeing.
RESEARCHLifestyle monitoring systems, intelligent proactive systems incorporating passive monitoring capabilities and allowing contemporaneous remote access to data promise potential benefits to service providers, service users and their carers and families and those engaged in ageing research. Research to date has focused primarily on technical issues, generally at the expense of detailed consideration of the ethical issues raised by these systems. The paper, which is based on a literature review, identifies ethical issues and questions for researchers around: informed consent; working with people who are cognitively impaired; surveillance and the passivity of monitoring; processes of care and using and linking lifestyle monitoring data. It concludes by emphasizing the importance of all parties exploring and discussing the tradeoff between potential benefits to multiple stakeholder groups and actual costs to the individual.
Suicide prevention activity, including a better psychiatric evaluation of patients within general hospital settings deserves more attention. Improved information flow between secondary and primary care could be facilitated by exploiting electronic records of previous psychiatric diagnoses.
RemoDem aimed to develop, test and evaluate services for people with dementia in remote areas of the Faroe Islands, Greenland, Sweden and Scotland. Formative and summative evaluation used a flexible research design including collection of baseline data, interviews and focus groups with key informants and data relating to service users i.e. people with dementia and their carers.Challenges for service providers included organisational difficulties, lack of clear information about their populations with dementia, lack of knowledge in local communities. Test sites which developed services building on their particular local starting points adopted both specialist and 'off the shelf' technologies, and found these were generally helpful for people with significant support needs.The flexible research design was found to be essential in the real world conditions of the service development and evaluation. Services were more successful where more mature and less experimental technologies were used. The new services promised to address effectively challenges of remoteness including distance, communication and workforce deployment issues.3
The paper considers a process of developing evidence-based design guidelines to be used in environments where people with dementia and sight loss are living. The research involved a systematically conducted literature review and a series of consultations with people affected by dementia and/or sight loss who lived or worked in care homes or in domestic settings. Findings from the literature and the consultations were used in an iterative process to develop the guidelines. The process is outlined, providing examples from the guidelines about lighting and colour and contrast. In discussing the research findings and the development process, the authors consider implications of the work including the weakness of the evidence base, the challenges of improving this and the need for innovative approaches to understanding the complexities of design for people with dementia and sight loss. They highlight the emphasis in the literature on independence for people with sight loss and the focus on control of people with dementia, arguing that this falls short of a genuinely person-centred approach, which recognises the active participation of people with dementia and sight loss
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