Integration of Dementia Systems in Central America: A Social Network Approach.

Introduction: Action 3 of the UN Decade of Healthy Ageing plan is to deliver integrated care to improve older adults' lives. Integrated care is vital in meeting the complex needs of people with dementia but little is known about how this is or could be delivered in low and middle income countries (LMIC). This paper provides insights into previously unknown care system structures and on the potential and reality of delivering integrated care in Central America for people with dementia. Methods: A social network analysis (SNA) methodology was adopted to engage with providers of services for older adults and families with dementia in Guatemala, El Salvador, Honduras, Costa Rica and Panama. Sixty-eight (68) semi-structured interviews were completed, 57 with organisations and 11 with families. Results: Across the five countries there was evidence of fragmentation and low integration within the dementia care systems. A variety of services and types of providers are present in all five countries, and high levels of diversified connections exist among organisations of differing disciplines. However, unawareness among network members about other members that they could potentially form active links with is a barrier on the path to integration. Conclusion: This innovative and robust study demonstrates SNA can be applied to evaluate LMIC care systems. Findings provide baselines of system structures and insights into where resources are needed to fortify integration strategies. Results suggest that Central American countries have the building blocks in place to develop integrated care systems to meet the needs of people with dementia, but the links across service providers are opportunistic rather than context based coordinated integration policies.

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.

Social, health and economic impact of COVID-19: Healthy Ageing In Scotland (HAGIS) - a protocol for a mixed-methods study.

INTRODUCTION: Public health responses to the COVID-19 pandemic have reaped adverse physical, psychological, social and economic effects, with older adults disproportionally affected. Psychological consequences of the pandemic include fear, worry and anxiety. COVID-19 fear may impact individuals' mitigation behaviours, influencing their willingness to (re)engage in health, social and economic behaviours. This study seeks (1) to develop a robust and evidence-based questionnaire to measure the prevalence of COVID-19 fear among older adults (aged ≥50) in Scotland and (2) to examine the impact of COVID-19 fear on the willingness of older adults to (re)engage across health, social and economic domains as society adjusts to the 'new normal' and inform policy and practice. METHODS AND ANALYSIS: This mixed-method study includes a large-scale multimodal survey, focus groups and interviews with older adults (aged ≥50) living in Scotland, and an email-based 'e-Delphi' consultation with professionals working with older adults. The COVID-19 fear scale was developed and validated using exploratory and confirmatory factor analyses. Survey data will be analysed using descriptive and inferential statistics. Thematic analysis will be used to analyse qualitative data. Survey and qualitative findings will be triangulated and used as the starting point for an 'e-Delphi' consensus consultation with expert stakeholders. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the University of Stirling for multimodal survey development, fieldwork methodology and data management. Anonymised survey data will be deposited with the UK Data Service, with a link provided via the Gateway to Global Ageing. Qualitative data will be deposited with the University of Stirling online digital repository-DataSTORRE. A dedicated work package will oversee dissemination via a coproduced project website, conference presentations, rapid reports and national and international peer-reviewed journal articles. There is planned engagement with Scottish and UK policy makers to contribute to the UK government's COVID-19 recovery strategy.

" Exercise opportunities became very important": Scottish older adults' changes in physical activity during Covid19'.

BACKGROUND: The purpose of this study was to explore perceived changes in physical activity (PA) due to Covid19 stay-at-home and social distancing guidance among older adults. METHODS: Participants (n = 1429, 77% female, 84% ≥60 years) living in Scotland completed an online survey in Summer 2020 measuring PA and wellbeing (indexed through loneliness, and health-related quality of life). The survey included open- and closed-ended questions about how these variables changed in response to Covid19 social distancing and 'shielding' guidelines. RESULTS: From the International Physical Activity Questionnaire (IPAQ), the majority reported high volumes of PA, indicative of being 'moderately' or 'highly' active. When asked specifically about strength training, 12% reported engagement on ≥2d/wk. Most participants reported that PA had changed during this time, citing reduced use of exercise facilities, increased active travel, and online PA classes; although only 16% reported engaging in PA online. CONCLUSIONS: Higher levels of PA were found to be associated with better health-related quality of life. Additional efforts should be made to support PA engagement in older adults, including strength training and other tailored approaches to support individual needs.

Using Technology the Right Way to Support Social Connectedness for Older People in the Era of COVID-19.

The restrictions imposed in response to the COVID-19 pandemic pose significant risks to the human rights of older people from limitations in how people are able to engage with their social lives and from increased risk of discrimination linked to conceptualization of COVID-19 as a disease of the old. Further, COVID-19 increases risks of social isolation through public health and societal responses such as lockdowns. These responses have resulted in significant shifts in how citizens and service providers think about technology as a tool to allow people to stay socially connected. However, there are risks to the rights of older people inherent in the use of technology related to their ability to access technology and ageist assumptions that may limit engagement. The 'Technology and Social Connectedness' project was a pre-pandemic mixed-methods study involving evidence review, secondary analyses, and qualitative methods. Cross-dataset analyses led to evidence-based guidance to inform a rights-based approach to using technology. This paper provides analysis from the project that foregrounds a rights-based approach demonstrating how we developed the guidance within this framework and, contextualized within the pandemic response in Scotland, how that guidance can help others to protect and uphold the human rights of older people.

Loneliness, Wellbeing, and Social Activity in Scottish Older Adults Resulting from Social Distancing during the COVID-19 Pandemic.

This study examined the impact of social distancing during the COVID-19 pandemic on loneliness, wellbeing, and social activity, including social support, in Scottish older adults. A mixed methods online survey was used to examine these factors during social distancing mid-lockdown, July 2020. Participants were asked to state whether loneliness, wellbeing, social activity, and social support had changed since pre-social distancing, and to provide details of strategies used to keep socially active. A total of 1429 adults (84% aged 60+ years) living in Scotland took part. The majority reported that social distancing regulations made them experience more loneliness and less social contact and support. Loneliness during lockdown was higher than reported norms for this age group before the pandemic. A larger social network, more social contact, and better perceived social support seemed to be protective against loneliness and poor wellbeing. Positive coping strategies reported included increasing online social contact with both existing social networks and reconnecting with previous networks, as well as increasing contact with neighbours and people in the community. This underlines the importance of addressing loneliness and social support in older adults but particularly during situations where risk of isolation is high.

Day Care for People with Dementia: A Qualitative Study Comparing Experiences from Norway and Scotland.

Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway's national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers.

Scaffolding and working together: a qualitative exploration of strategies for everyday life with dementia.

Background: living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods: this article reports on a secondary analysis of qualitative data from focus groups and individual interviews with people with dementia and their carers in the North of England. In total, 65 people with dementia and 82 carers took part in the research: 26 in interviews and 121 in focus groups. Focus group and interview audio recordings were transcribed verbatim. A qualitative, inductive, thematic approach was taken for data analysis. Findings: the article applies the metaphor of scaffolding to deepen understanding of the strategies used by families. Processes of scaffolding were evident across the data where families, communities, professionals and services worked together to support everyday life for people with dementia. Within this broad theme of scaffolding were three sub-themes characterising the experiences of families living with dementia: doing things together; evolving strategies; and fragility and fear of the future. Conclusions: families with dementia are resourceful but do need increasing support (scaffolding) to continue to live as well as possible as dementia progresses. More integrated, proactive work is required from services that recognises existing scaffolds and provides appropriate support before informal strategies become unsustainable; thus enabling people with dementia to live well for longer.

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.

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.

'What I want to do is get half a dozen of them and go and see Simon Cowell': Reflecting on participation and outcomes for people with dementia taking part in a creative musical project.

This paper presents the findings from an evaluation of a creative musical project led by Scottish Opera. The project included people with dementia and their carers in the development, writing, design and performance of a musical production about their experiences of love. The project involved professional singers, artists and choreographers from the opera company. Activities involved practice sessions and performances. People with dementia and their carers reflected on positive outcomes from the project including improved confidence; being part of a group; improved physical strength and people seeing them in a new way. Within the evaluation framework they also reported on how the project had been run and gave ideas for future development. Key elements in the success of this project were the involvement of professionals, the kudos of working with a national organisation and the performances that, while daunting, provided unique and rewarding experiences.

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.

An evaluation of an online postgraduate dementia studies program.

Education is key to addressing the challenges of providing high-quality care to the ever growing number of people with dementia. Although dementia education is required for multiple professions and disciplines working with people with dementia and their families and friends, there is a gap in knowledge of students' views about university-level online dementia education. This article reports on an evaluation, via an online questionnaire, of student views of the delivery modes and learning impact for the first online postgraduate program in Dementia Studies worldwide. The majority of our respondents (65%) reported their participation in the Dementia Studies program as broadening their thinking, with 61% reporting that it broadened their practice. Students also reported on the utility of initial face-to-face teaching and the extent to which they are able to apply their learning to practice. The article concludes by suggesting that a blended learning approach, comprising online and face-to-face teaching with an emphasis on reflexivity has the potential to meet the global demand for skilled dementia care practitioners and to create leaders in the dementia care field.

Caring for older people with an intellectual disability: a systematic review.

This review critically evaluates the available research literature on aging among people with an intellectual disability. 42 papers meeting the review inclusion criteria are presented under three themes: studies with a service user perspective (13), studies of carers of older people with ID (14) and studies of service provision for older people with ID (15). User view specific findings relate to concerns about accommodation; experiences of services; and perceptions of aging; with a common underlying finding from all user focused themes that of unmet need. Carer specific findings relate to fear of the future; experiences of older carers; and planning for the future. Services themes reflect the debate over specialist or generalist services as people age; accommodation; retirement from day services; and staff training. Overall this review reveals a lack of robust research evidence concerning the lives of older people with ID and a need for more research that directly engages with older people with ID and their carers.

'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 holistic approach to caring for people with Alzheimer's disease.

This article adopts a holistic view of Alzheimer's disease. Biomedical, psychological and social aspects of the condition are discussed, and aetiology, epidemiology, diagnosis and treatment explored. A range of approaches to working with people with Alzheimer's disease, based on a psychological model of dementia, is described including reminiscence and cognitive stimulation therapy.