ObjectivesCommunity-based support for people with earlier-stage dementia and their care partners, such as regularly meeting groups and activities, can play an important part in postdiagnostic care. ...Typically delivered piecemeal in the UK, by a variety of agencies with inconsistent funding, provision is fragmented and many such interventions struggle to continue after only a short start-up period. This realist review investigates what can promote or hinder such interventions in being able to sustain long term.MethodsKey sources of evidence were gathered using formal searches of electronic databases and grey literature, together with informal search methods such as citation tracking. No restrictions were made on article type or study design; only data pertaining to regularly meeting, ongoing, community-based interventions were included. Data were extracted, assessed, organised and synthesised and a realist logic of analysis applied to trace context–mechanism–outcome configurations as part an overall programme theory. Consultation with stakeholders, involved with a variety of such interventions, informed this process throughout.ResultsAbility to continually get and keep members; staff and volunteers; the support of other services and organisations; and funding/income were found to be critical, with multiple mechanisms feeding into these suboutcomes, sensitive to context. These included an emphasis on socialising and person-centredness; lowering stigma and logistical barriers; providing support and recognition for personnel; networking, raising awareness and sharing with other organisations, while avoiding conflict; and skilled financial planning and management.ConclusionsThis review presents a theoretical model of what is involved in the long-term sustainability of community-based interventions. Alongside the need for longer-term funding and skilled financial management, key factors include the need for stigma-free, person-centred provision, sensitive to members’ diversity and social needs, as well as the need for a robust support network including the local community, health and care services. Challenges were especially acute for small scale and rural groups.
The majority of people with dementia live in their own homes, often supported by a family member. While this is the preferred option for most, they often face multiple challenges due to a ...deterioration in their physical and cognitive abilities. This paper reports on a pilot study that aimed to explore the impacts of aids and adaptations on the wellbeing of people with dementia and their families living at home. Quantitative data were collected using established measures of wellbeing at baseline, 3 months and 9 months. In-depth case studies were carried out with a sample of participants. Findings from the pilot suggest that relatively inexpensive aids can contribute towards the maintenance of wellbeing for people with dementia in domestic settings. The project also increased the skills and confidence of professionals involved in the project and strengthened partnerships between the collaborating organisations across health, housing and social care. Providing aids that can help people with dementia to remain living at home with a good quality of life, often with the support of a family member, is an important element in the development of age-friendly communities.
Continuing medical education (CME) is a requirement for medical professionals to stay current in their ever-changing fields. The recent significant changes that have occurred due to the COVID-19 ...pandemic have significantly impacted the process of providing and obtaining CME. In this paper, an updated approach to successfully creating and administering CME is offered. Recommendations regarding various aspects of CME development are covered, including competitive assessment, marketing, budgeting, property sourcing, program development, and speaker and topic selection. Strategies for traditional and hybrid CME formats are also explored. Readers and institutions interested in developing CME, especially in the setting of the ongoing pandemic, will be able to use these strategies as a solid framework for producing CME. The recommendations and strategies presented within this paper are based on the authors’ opinions, expert opinions, and experiences over 13 years of creating CME events and challenges brought about due to the COVID-19 pandemic.
Purpose: The process of individual ageing in the context of a care environment is marked by continuity and change. It is shaped by individual, health-related factors as well as by diverse social and ...environmental factors, including characteristics of the places where older people live. The aim of this paper was to explore how longitudinal qualitative research, as a research method, could be used to explore older people's changing care needs.
Methods: The study used a longitudinal design to examine how the care and support needs of residents and their expectations of services developed over time and how these were influenced by changes in the organisation of their housing as well as in the make-up of the resident population. Residents were interviewed on four occasions over 20 months.
Results: The study highlighted the complex ways in which some participants proactively managed the care and support they received, which we argue would have been difficult to discern through other methods.
Conclusion: The study adds to the growing evidence base that supports the use of qualitative longitudinal research; the approach enables the researcher to capture the diverse and mutable nature of older people's experiences at a time of profound change in their lives.
Extra care housing (ECH) is a type of housing with care and support designed to enable older people to age in place. Approximately one fifth of residents living in ECH are living with dementia and ...yet, there remains gaps as to how best to support people to live well with dementia in the context. ECH stock across the United Kingdom (UK) includes a diverse range of options that can be grouped into integrated, specialist and separated accommodation. Integrated models involve residents with dementia living alongside residents without dementia. Specialist ECH offer accommodation exclusively for people living with dementia. Separated models offer a separate area for residents with dementia within a larger, integrated site. How these different models work for residents living with dementia is little known and has remained a significant gap in knowledge that impairs both professionals and people living with dementia when choosing housing and care. This paper reports on findings from a large study of residents living with dementia in ECH. The focus is on the potential benefits and challenges of different models of provision. Data were generated from interviews with 100 participants (residents, family members, staff, and adult social care professionals) at eight case study sites across England. Findings demonstrated that there are potential benefits and challenges within each model, but the limited diversity of stock limits choice. Multiple variables beyond the model of provision affect the lived experience, meaning that there is no universal model of optimal support. Rather, the approach and resources of each site is more important than the model of provision. Suggestions for future research directions are considered.
Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with ...health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.
Purpose
– Appropriate housing for the growing population of older adults is becoming an international concern. The purpose of this paper is to report on a review of UK and international literature ...carried out as part of a project exploring the commissioning and delivery of social care in housing with care settings. The paper also considers housing with care in the context of UK policy and practice.
Design/methodology/approach
– The peer literature review process used a range of academic databases as well as government and third sector web sites, drawing on relevant material in English published from 1990 to 2012.
Findings
– Findings are presented within three main themes: how care and support is provided; the role of the built environment; and the benefits for resident well-being. The review found a paucity of literature focusing specifically on care and support in housing with care settings, particularly in terms of how social care is delivered, but the evidence base suggests that housing with care is in a strong position to deliver on most if not all UK government aspirations.
Practical implications
– Despite a growing literature both in the UK and internationally exploring the characteristics and benefits of housing with care for older people, substantial gaps remain in the research evidence.
Originality/value
– This paper presents an up to date review of the housing with care literature in the context of current UK policy.
Purpose The purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, ...including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent. Design/methodology/approach This study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners. Findings Findings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia. Research limitations/implications Despite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection. Practical implications Whilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents’ well-being and quality of life. Originality/value This paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia.
Introduction: Faced with rising numbers of older people in need of care and restrictions on public expenditure in the UK, extra care housing (ECH) has been hailed as an integrated model of housing ...with care that allows older people to live independently, while also having access to care and support if required. Despite the proposed benefits of ECH, however, little is known about how responsive it is to the needs of older people as their care needs change. Theory/Methods: This presentation reports on findings from the ECHO project, which explored the perspectives and experiences of those living and working in ECH settings. Longitudinal qualitative research was undertaken at 4 ECH settings (including one dementia-specialist scheme), based in 2 areas, over the course of 2 years. Residents were interviewed on 4 occasions to explore how their care needs and experiences of ECH changed over time. Managers were interviewed twice, at the beginning and end of the study, and care workers were interviewed on one occasion. Results: Residents appreciated the flexibility in the way that care was provided and felt that the ECH model allowed them some control over when and how their care was delivered. Some residents, care workers and managers reported an increase in care needs amongst people moving into ECH and amongst existing residents as they aged in place. Interviews with care workers revealed that their work was organised in a time/task manner. This resulted in frustration for some care workers who felt unable to provide care in a flexible and personalised way. Some care workers found ways to compensate for this approach by providing ‘favours’, doing tasks beyond their role. Discussions: The organisation of work in the 4 ECH schemes imitated patterns of work at some traditional care homes and it appeared that there was very little slack in the system. This is problematic given that there is an expectation of ECH to meet the changing care needs of residents in a timely and responsive manner. Such problems appear to be exacerbated by the changing context of ECH which means that the population whom it serves now has higher and more complex needs. Conclusions (including key findings): ECH’s integrated model of housing and care has the potential to support quality of life for older people, including those living with dementia. However, while the ECH model promises to allow for increased flexibility and a more personalised approach to care delivery, cost saving forms of work organisation can undermine this approach. Lessons learned: Longitudinal research is a beneficial way to examine how older people’s care needs are responded to in integrated housing and care environments. Limitations: Though a longitudinal approach allowed us to consider how participants’ experiences altered over time, and in relation to contextual change, this approach was not as effective with residents living in a dementia-specialist ECH scheme. Suggestions for future research: Further research is required to establish whether ECH is the most appropriate form of integrated housing and care for older people living with dementia.
Aim
Being an informal carer for a person living with dementia can be a demanding role which can have detrimental effects on personal well-being and affect a person’s ability to provide care for their ...loved one. This evaluation of support courses, offered by a leading UK charity dedicated to dementia family carers, highlights the impact of training to support the caring role.
Setting
Participants completed booklets at the training venue and subsequently online or by post. Interviews with participants took place by telephone. Participants: 84 participants completed booklets containing measures which generated quantitative data whilst 19 family carers participated in qualitative telephone interviews.
Design
A mixed methods approach was taken using booklets of validated measures to capture quantitative data, including capture of demographic information, together with semi-structured interviews conducted by telephone which were recorded, transcribed and subsequently analysed using thematic analysis.
Results
Overall, both the quantitative and qualitative analysis demonstrate that attending the carers support courses had a positive impact on carers with improvements being maintained over time. Outcomes indicated that carers generally remained in a better physical, mental and emotional situation than that experienced before the course.
Conclusion
Being prepared for the trajectory of the caring role when providing care for a person living with dementia can help informal carers to be better prepared, better supported and better informed. Evidence gained from this evaluation demonstrates the impact of the courses and adds to the current weak evidence base relating to dementia courses aimed at preparing carers to care.
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