Outcomes of home design to support healthy cognitive ageing: modified e-Delphi exercise with older people and housing-related professionals.

BACKGROUND: There is emerging agreement that living in a home designed to support healthy cognitive ageing can enable people to live better with dementia and cognitive change. However, existing literature has used a variety of outcome measures that have infrequently been informed by the perspectives of older people or of professional in design and supply of housing. The DesHCA (Designing Homes for Healthy Cognitive Ageing) study aimed to identify outcomes that were meaningful for these groups and to understand their content and meanings. METHODS: A presurvey of older people and housing professionals (n = 62) identified potential outcomes. These were then used in three rounds of a modified e-Delphi exercise with a panel of older people and housing professionals (n = 74) to test meanings and identify areas of agreement and disagreement. Descriptive statistics were used to present findings from previous rounds. RESULTS: The survey confirmed a wide range of possible outcomes considered important. Through the e-Delphi rounds, panellists prioritised outcomes relating to living at home that could be influenced by design, and clarified their understanding of the meanings of outcomes. In subsequent rounds, they commented on earlier results. The exercise enabled five key outcome areas to be identified - staying independent, feeling safe, living in an adaptable home, enabling physical activity and enabling enjoyed activities- which were then tested for their content and applicability in panellists' views. CONCLUSION: The five key outcome areas appeared meaningful to panellists, whilst also demonstrating nuanced meanings. They indicate useful outcomes for future research, though will require careful definition in each case to become measures. Importantly, they are informed by the views of those most immediately affected by better or poorer home design.

Capacity building for dementia care in community care services: a mixed methods approach.

BACKGROUND: The prevalence of dementia is surging that results in huge service demand in the community care services. Dementia care competence of staff working in these settings is fundamental of the care quality. This project aims to examine the effects of staff training on their competence for the anticipated challenges in dementia care and explore how the training influence their care practices. METHODS: This study adopted a mixed methods triangulation design, including a prospective multi-center study with pre-test post-test evaluations and a narrative analysis of the participants' reflective essays. Seventeen experienced health and social care professionals were trained as trainers at the Dementia Services Development Centre of the University of Stirling, UK. The trainers provided local facilitator training to staff members by using training materials that were culturally adapted to the local context. The facilitators were required to deliver 12 two-hour in-service training sessions for 6 months to their colleagues in a small group format in their respective workplace. Eventually a total of 1347 staff members from community care centers, day care centers, outreach teams and care homes of 70 non-government organizations in Hong Kong participated in the study between April 2017 and December 2018. Validated instruments were used to measure knowledge, attitude, sense of competence in dementia care and job satisfaction at the baseline and at 12-month follow-up. All participants were required to write a reflective essay to describe their experiences in dementia care by the end of the training. RESULTS: A total of 1264 participants, including 195 facilitators and 1069 learners, completed all assessment were included for analysis. Significant improvements were observed in all outcomes at the 12-month follow-up assessment (Ps ≤ .001). The magnitude of improvements in attitudes was the largest. The findings also showed that the effects of the training program significantly varied across different groups of learners in terms of age, occupation, work and training experience. CONCLUSIONS: This community-wide large-scale project provided evidence that the train-the-trainer model and reflective learning are effective means to facilitate situated learning that promote awareness and understanding of dementia, and consequently enhance sustainability of changes in care practices.

Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach.

BACKGROUND: This 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. METHODS: Systematic 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. RESULTS: Of 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. CONCLUSIONS: In 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.

Early telemedicine training and counselling after hospitalization in patients with severe chronic obstructive pulmonary disease: a feasibility study.

BACKGROUND: An essential element in the treatment of patients with chronic obstructive pulmonary disease (COPD) is rehabilitation, of which supervised training is an important part. However, not all individuals with severe COPD can participate in the rehabilitation provided by hospitals and municipal training centres due to distance to the training venues and transportation difficulties. The aim of the study was to assess the feasibility of an individualized home-based training and counselling programme via video conference to patients with severe COPD after hospitalization including assessment of safety, clinical outcomes, patients' perceptions, organisational aspects and economic aspects. METHODS: The design was a pre- and post-test intervention study. Fifty patients with severe COPD were included. The telemedicine training and counselling included three weekly supervised exercise sessions by a physiotherapist and up to two supervised counselling and training sessions in energy conservation techniques by an occupational therapist. The telemedicine videoconferencing equipment was a computer containing a screen, a microphone, an on/off switch and a volume control. RESULTS: Thirty seven (74%) participants completed the programme, with improvements in health status assessed by the Clinical COPD Questionnaire and physical performance assessed by a sit-to-stand test and a timed-up-and-go test. There were no cases of patient fall or emergency contact with a general practitioner during the telemedicine training sessions. The study participants believed the telemedicine training and counselling was essential for getting started with being physically active in a secure manner. The business case showed that under the current financing system, the reimbursement to the hospital was slightly higher than the hospital expenditures. Thus, the business case for the hospital was positive. The organizational analysis indicated that the perceptions of the staff were that the telemedicine service had improved the continuity of the rehabilitation programme for the patients and enabled the patients' everyday lives to be included in the treatment. CONCLUSIONS: This study showed that home-based supervised training and counselling via video conference is safe and feasible and that telemedicine can help to ensure more equitable access to supervised training in patients with severe COPD. TRIAL REGISTRATION: Clinical Trials NCT02085187 (Date of registration 10.03.2014).

Othering Older People's Housing: Gaming Ageing to Support Future-Planning.

The 'othering' of ageing is linked to an integrated process of ageism and hinders planning for the future for both individuals and practitioners delivering housing and health services. This paper aims to explore how creative interventions can help personalise, exchange knowledge and lead to system changes that tackle the 'othering' of ageing. The Designing Homes for Healthy Cognitive Ageing (DesHCA) project offers new and creative insights through an innovative methodology utilising 'serious games' with a co-produced tool called 'Our House' that provides insights into how to deliver housing for older people for ageing well in place. In a series of playtests with over 128 people throughout the UK, the findings show that serious games allow interaction, integration and understanding of how ageing affects people professionally and personally. The empirical evidence highlights that the game mechanisms allowed for a more in-depth and nuanced consideration of ageing in a safe and creative environment. These interactions and discussions enable individuals to personalise and project insights to combat the 'othering' of ageing. However, the solutions are restrained as overcoming the consequences of ageism is a societal challenge with multilayered solutions. The paper concludes that serious gaming encourages people to think differently about the concept of healthy ageing-both physically and cognitively-with the consideration of scalable and creative solutions to prepare for ageing in place.

Physical activity for people with dementia: a scoping study.

BACKGROUND: This 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. METHODS: Methods included an evidence review using literature; mapping current service provision through a survey; and in-depth interviews with a sample of service providers. RESULTS: The 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. CONCLUSION: Despite 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.

Development of an intervention programme theory to increase movement in care homes for people with cognitive impairment: Care homes achieving realistic movement strategies (CHARMS).

There is an increase in both the number of people living in care homes, and the cognitive impairments they experience. Some of these experiences of cognitive impairments can be improved by appropriate movement and physical activity interventions, delivered in ways which take into account an individual's preferences, needs and abilities. A clear intervention programme theory (how we expect an intervention to work) can improve effectiveness, acceptability, transferability and sustainability. We used a systematic framework (Six Steps in Quality Intervention Development) and a co-production approach, to develop an intervention programme theory for Care Homes Achieving Realistic Movement Strategies (CHARMS). We identified twenty factors contributing to low levels of physical activity and movement which we grouped into four categories for change: i) cultural/staff; ii) residents; iii) environmental and iv) policy/system. A theory of change was developed using these categories plus additional theories to create ownership. It became evident that the intervention (the theory of action) needed to include activities in all categories; intervening in just one category (e.g. providing weekly physical activity) was not sufficient in itself. Developing the programme theory enabled care homes to develop activities to meet their specific contextual needs and develop ownership of the process and the intervention.

'Keeping your brain active': the activities of people aged 50-65 years.

OBJECTIVE: The paper aims to construct a baseline of knowledge about current activities, attitudes and motivations of a sample of people aged 50-65 years in relation to 'keeping one's brain active', with a particular focus on activities suggested in the literature and in popular parlance to have positive effects. METHODS: An online survey of people aged 50-65 years concerning their activities and motivations in relation to 'keeping one's brain active' was conducted with a sample of people employed in Scotland and in two online discussion forums. The survey ascertained respondents' background demographic data, data on health and lifestyle factors, activities they engaged in and reasons for engagement, including any concerns about dementia and experience of dementia. The achieved sample of 402 responses was representative of the general population on most counts, although the sample included more better-educated people and more smokers. RESULTS: Dementia prevention was a motivating factor for 21% of the respondents. More women and more of those living alone reported this motivation. It was linked with experience of dementia and future fears of developing the condition. New 'brain-training' technologies were used by younger people in higher socio-economic groups, and dementia prevention was cited as a motivation. CONCLUSION: The findings indicate that dementia prevention motivates activities perceived to keep the brain active, despite there being a virtual absence of scientific evidence showing that the desired effects will follow. Given the existence of evidence suggesting that other activities, particularly physical exercise, may be more important and the possibility that stress itself may promote the development of dementia, further research is urgently needed.

A model for assessment of telemedicine applications: mast.

OBJECTIVES: Telemedicine applications could potentially solve many of the challenges faced by the healthcare sectors in Europe. However, a framework for assessment of these technologies is need by decision makers to assist them in choosing the most efficient and cost-effective technologies. Therefore in 2009 the European Commission initiated the development of a framework for assessing telemedicine applications, based on the users' need for information for decision making. This article presents the Model for ASsessment of Telemedicine applications (MAST) developed in this study. METHODS: MAST was developed through workshops with users and stakeholders of telemedicine. RESULTS: Based on the workshops and using the EUnetHTA Core HTA Model as a starting point a three-element model was developed, including: (i) preceding considerations, (ii) multidisciplinary assessment, and (iii) transferability assessment. In the multidisciplinary assessment, the outcomes of telemedicine applications comprise seven domains, based on the domains in the EUnetHTA model. CONCLUSIONS: MAST provides a structure for future assessment of telemedicine applications. MAST will be tested during 2010-13 in twenty studies of telemedicine applications in nine European countries in the EC project Renewing Health.

Cultural diversity and the mistreatment of older people in black and minority ethnic communities: some implications for service provision.

Previous research on mistreatment of older people in black and minority ethnic communities has identified limited service responses and the need to consider mistreatment as an issue not only for individuals but also for families, communities, and institutions. The impact of cultural factors on understandings, experiences, and remedies for mistreatment has been debated. Drawing on empirical research in the United Kingdom involving service providers and ethnically-diverse community members, the article explores implications of cultural variation for service provision. Clear gaps exist between service provision and people experiencing mistreatment due to structural and contextual factors; cultural factors have a relatively minor impact.

Are Analogue or Digital Clocks Friendlier for People Living with Dementia?

BACKGROUND: In ageing population, it is desirable to reduce the impact of cognitive decline on daily life. While various types of dementia-friendly environments have been proposed, the question still remains regarding whether analogue or digital clocks are friendlier for people with dementia. METHODS: In clinical practice, we normally use our original clock reading test (10 analogue and 10 digital clocks) to assess patients' ability to read a clock. In the present study, a retrospective medical record survey was conducted. Fifty-five participants who had done the test were identified. The result of the test was compared between analogue and digital clocks. Additionally, to assess specific ability to read analogue clocks, an "analogue-digital gap" was defined as the difference between patients' performance for analogue and digital clocks. Univariate and multivariate analyses were conducted to detect significant factors associated with reading ability specific to analogue clocks. RESULTS: The analogue clock proved less readable than the digital clock, even after adjusting for MMSE total score (p = 0.003). Multivariate analysis revealed reading ability of the analogue clock was significantly associated with MMSE calculation and clock drawing test (p = 0.009 and 0.040, respectively). CONCLUSIONS: In the present study, the digital clock was friendlier than the analogue clock for patients with dementia. Compared to the digital clock, reading analogue clocks might require more widespread cognition, such as working memory and visuospatial processing. While our finding was a general tendency, and individual assessment is necessary, it might help the development of personalized environmental adjustments.

RemoDem: Delivering support for people with dementia in remote areas.

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 and 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 that 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.

A collaborative exploration of the reasons for lower satisfaction with services among Bangladeshi and Pakistani social care users.

This study explored underlying reasons for the expression of dissatisfaction with services among Bangladeshi and Pakistani social care users in England and investigated, using a collaborative approach, how these could be addressed. In-depth interviews were conducted in Birmingham, Leeds and London during 2012-2013 with 63 Bangladeshi, Pakistani and white British service users and 24 social care managers, social workers and care workers. A further 34 cognitive interviews were conducted within the same study. Following data analysis, three collaborative workshops involving service users and providers were held to validate the findings and to draw out policy and practice recommendations. Analysis of the cognitive interviews showed that higher dissatisfaction among Bangladeshi and Pakistani service users reported in social care surveys was not due to questionnaire design. Instead in-depth interviews showed that dissatisfaction across all three groups was expressed along the social care journey, including accessing care, communication with social workers and the nature of care received. While many issues were common to all three groups, cultural differences also emerged as affecting experiences of social care. These included misunderstandings about family roles in care; gender issues, especially relating to women; language and communication barriers, alongside the need for a more nuanced approach to ethnic 'matching'; and continuing limited cultural understanding among care workers. The collaborative workshops identified practical actions that could address some of the issues identified. These covered raising awareness of services within communities; improving support for informal carers; service user input to assessments; consistent and ongoing sharing of information; improving access; and more efforts to diversify and appropriately train the social care workforce. In conclusion, the paper presents the reality of dissatisfaction among these groups and argues for more action involving communities and service providers to address these persistent issues collaboratively.

Spotlight on Scotland: Assets and Opportunities for Aging Research in a Shifting Sociopolitical Landscape.

Scotland is a small nation, yet it leads the field in key areas of aging research. With the creation of a devolved government with authority over health and social services, the country has witnessed practice and policy developments that offer distinctive opportunities for innovative research. With multidisciplinary groups of internationally recognized researchers, Scotland is able to take advantage of a unique set of opportunities for aging research: a well-profiled population brings opportunities in population data and linkage to understand people's interactions with health, social care, and other public services; while research on technology and telecare is a distinctive area where Scotland is recognized internationally for using technology to develop effective, high-quality and well-accepted services at relatively low financial cost. The paper also considers free personal care for older people and the national dementia strategy in Scotland. The potential to evaluate the impact of free personal care will provide valuable information for other global health and social care systems. Exploring the impact of the national dementia strategy is another unique area of research that can advance understanding in relation to quality of life and the development of services. The paper concludes that, while Scotland benefits from unique opportunities for progressive public policy and innovative aging research that will provide valuable lessons at the forefront of a globally aging population, the challenges associated with an aging population and increasing cultural diversity must be acknowledged and addressed to ensure that the vision of equality and social justice for all is realized.

'We didn't know it would get that bad': South Asian experiences of dementia and the service response.

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.

Networks of informal caring: a mixed-methods approach.

Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.

Methodologies for assessing telemedicine: a systematic review of reviews.

BACKGROUND AND OBJECTIVES: Previous reviews have expressed concerns about the quality of telemedicine studies. There is debate about shortcomings and appropriate methodologies. The aim of this review of systematic reviews of telemedicine is to summarize methodologies used in telemedicine research, discuss knowledge gaps and recommendations and suggest methodological approaches for further research. METHODS: We conducted a review of systematic reviews of telemedicine according to a protocol listing explicit methods, selection criteria, data collection and quality assessment procedures. We included reviews where authors explicitly addressed and made recommendations for assessment methodologies. We did a qualitative analysis of the reviews included, sensitized by two broad methodological positions; positivist and naturalistic approaches. The analysis focused on methodologies used in the primary studies included in the reviews as reported by the review authors, and methodological recommendations made by the review authors. RESULTS: We identified 1593 titles/abstracts. We included 50 reviews that explicitly addressed assessment methodologies. One group of reviews recommended larger and more rigorously designed controlled studies to assess the impacts of telemedicine; a second group proposed standardisation of populations, and/or interventions and outcome measures to reduce heterogeneity and facilitate meta-analysis; a third group recommended combining quantitative and qualitative research methods; and others applying different naturalistic approaches including methodologies addressing mutual adaptations of services and users; politically driven action research and formative research aimed at collaboration to ensure capacity for improvement of services in natural settings. CONCLUSIONS: Larger and more rigorous studies are crucial for the production of evidence of effectiveness of unambiguous telemedicine services for pre defined outcome measures. Summative methodologies acknowledging telemedicine as complex innovations and outcomes as partly contingent on values, meanings and contexts are also important. So are formative, naturalistic methodologies that acknowledge telemedicine as ongoing collaborative achievements and engage with stakeholders, including patients to produce and conceptualise new and effective telemedicine innovations.

Physical activity in South Asians: an in-depth qualitative study to explore motivations and facilitators.

BACKGROUND: People of South Asian backgrounds living in the UK have a five-fold increased risk of diabetes and a two-fold increased risk of heart disease when compared to the general population. Physical activity can reduce the risk of premature death from a range of conditions. The aim of the study was to explore the motivating and facilitating factors likely to increase physical activity for South Asian adults and their families, in order to develop successful interventions and services. METHODOLOGY/PRINCIPAL FINDINGS: This was a qualitative study using focus groups and in-depth interviews. Participants were 59 purposively selected Bangladeshi-, Indian- and Pakistani-origin men and women with an additional 10 key informants. The setting was three urban areas of Scotland: Aberdeen, Glasgow and Edinburgh. We undertook a theoretically informed thematic analysis of data. Study participants described engaging in a range of physical activities, particularly football and the gym for men, and walking and swimming for women. The main motivators for taking part in physical activity were external motivators--i.e. undertaking physical activity as a means to an end, which included the opportunities that physical activity provided for social activity and enjoyment. The goals of weight reduction and improving mental and physical health and were also mentioned. Role models were seen as important to inspire and motivate people to undertake activities that they may otherwise lack confidence in. Few people undertook physical activity for its own sake (intrinsic motivation). CONCLUSIONS/SIGNIFICANCE: Attempts at promoting physical activity in people of South Asian origin need to take account of the social context of people's lives and the external motivators that encourage them to engage in physical activity. Undertaking group based physical activity is important and can be facilitated through religious, community, friendship or family networks. Role models may also prove particularly helpful.

Effectiveness of telemedicine: a systematic review of reviews.

OBJECTIVES: To conduct a review of reviews on the impacts and costs of telemedicine services. METHODS: A review of systematic reviews of telemedicine interventions was conducted. Interventions included all e-health interventions, information and communication technologies for communication in health care, Internet based interventions for diagnosis and treatments, and social care if important part of health care and in collaboration with health care for patients with chronic conditions were considered relevant. Each potentially relevant systematic review was assessed in full text by one member of an external expert team, using a revised check list from EPOC (Cochrane Effective Practice and Organisation of Care Group) to assess quality. Qualitative analysis of the included reviews was informed by principles of realist review. RESULTS: In total 1593 titles/abstracts were identified. Following quality assessment, the review included 80 heterogeneous systematic reviews. Twenty-one reviews concluded that telemedicine is effective, 18 found that evidence is promising but incomplete and others that evidence is limited and inconsistent. Emerging themes are the particularly problematic nature of economic analyses of telemedicine, the benefits of telemedicine for patients, and telemedicine as complex and ongoing collaborative achievements in unpredictable processes. CONCLUSIONS: The emergence of new topic areas in this dynamic field is notable and reviewers are starting to explore new questions beyond those of clinical and cost-effectiveness. Reviewers point to a continuing need for larger studies of telemedicine as controlled interventions, and more focus on patients' perspectives, economic analyses and on telemedicine innovations as complex processes and ongoing collaborative achievements. Formative assessments are emerging as an area of interest.