...a lack of support for independent living (through care at home and/or linked to sheltered housing), care and support for people with dementia, and carer support and respite. Other gaps included palliative care /end of life care at home, 24-hour care for younger people and having information about support when it is needed. There were concerns about a funding gap between the cost of the services needed
(Edited publisher abstract)
The National Development Team for Inclusion (NDTi) was commissioned by Scottish Borders Council and the Scottish Borders Health and Social Care Partnership (HSCP) to undertake some early engagement work with the Hawick community and key stakeholders regarding views about the development of a care village in the area and options for health and social care provision in the future. This report details the results of that engagement which will be used to inform the future plans for the area and the development of a more detailed business case. Scottish Borders recognise that this engagement is not a one off process and ongoing conversations will be take place using the principles of co-production to build on this work and inform future plans. We heard that people valued existing health and care services in Hawick including from the community hospital, Deanfield care home, supported housing and community groups. They missed some of the services that had closed, and a core message was not to close any further facilities until new services were opened. A number of gaps in services were highlighted, which reflected the demographics and focus of those engaging. Three of the main ones were a lack of support for independent living (through care at home and/or linked to sheltered housing), care and support for people with dementia, and carer support and respite. Other gaps included palliative care /end of life care at home, 24-hour care for younger people and having information about support when it is needed. There were concerns about a funding gap between the cost of the services needed and resources available, and a view that that services should be more joined up. Overall, it was clear that people want flexible care options to meet their needs in a way that preserves their dignity and independence at home and in residential settings through: better integration between housing, care and health services; a person-centred approach where staff understands what matters to an individual; future proofing when repurposing /designing care provision; training and development for all care staff.
(Edited publisher abstract)
Subject terms:
user views, retirement communities, residential care, adult social care;
...and for the most part is a decline in opinions. Areas with the largest increase in negative results are those relating to patients' fundamental needs, such as getting enough help to wash or keep clean and to eat meals, as well as being able to get help from staff when needed. Respondents who reported having Dementia or Alzheimer's, a mental health condition, a heart problem and those with a neurological
(Edited publisher abstract)
This survey looks at the experiences of people who stayed at least one night in hospital as an inpatient. People were eligible to take part in the survey if they stayed in hospital for at least one night during November 2021 and were aged 16 years or over at the time of their stay. The results show some change in people's experience of inpatient care compared with the previous survey in 2020, and for the most part is a decline in opinions. Areas with the largest increase in negative results are those relating to patients' fundamental needs, such as getting enough help to wash or keep clean and to eat meals, as well as being able to get help from staff when needed. Respondents who reported having Dementia or Alzheimer's, a mental health condition, a heart problem and those with a neurological condition reported poorer experiences for more than half of the questions. In contrast, older people, people who were in hospital for an elective admission, those who stayed in hospital for only one night, and those considered less frail generally reported better experiences. Hospital discharge remains a challenging part of people's experiences of care. Patients were not always involved in decisions about discharge and did not always know what would happen next with their care, with both having deteriorated compared with 2020. Fewer patients said staff discussed with them whether they may need further health and social care services after leaving hospital: 79% compared with 81% previously. After leaving hospital, less than half (46%) of patients said they definitely got enough support from health and social care services to help them recover or manage their condition, which is also a decrease compared with 51% previously.
(Edited publisher abstract)
Subject terms:
surveys, hospitals, hospital discharge, integrated care, user views, patients, adult social care;
Health and Social Care in the Community, 30(4), 2022, pp.e1375-e1383.
Publisher:
Wiley
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia...
(Edited publisher abstract)
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia and their care partners in the North-West of England. Semi-structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well-being and social health for all participants. Community-based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise.
(Edited publisher abstract)
Subject terms:
carer views, dementia, co-production, user views, user participation, social isolation, wellbeing, evaluation, peer support;
Journal of Long-Term Care, February 2022, pp.49-60. Online only
Publisher:
King's College London
Place of publication:
London
...to be mindful of these challenges in order to facilitate research relating to COVID-19 and more generally in gerontology and dementia.
(Edited publisher abstract)
Following the global health pandemic of COVID-19, a spotlight has been placed on care homes in the UK and the disproportionate impact the virus has had, and continues to have (Hanratty et al., 2020). There is an urgent need to widen our knowledge base about care homes and the inclusion of people living and working in care homes in research studies. This paper presents qualitative findings from a study exploring the facilitators and barriers to research participation in care homes. Semi-structured interviews were conducted with residents (n = 12), staff (n = 15), relatives (n = 6) and researchers (n = 8) across three care homes in Scotland between 2014 and 2015. The findings suggest that the key barriers and facilitators to research participation are best captured by three themes: relationships, knowledge about research, and structural challenges. The way these themes are navigated within the care home is expected to shape the willingness and ability of care homes to engage in research. Positive relationships, accessible information about research, and adequate time and space are all likely to increase research presence within care homes. Conversely, poor relationships, alienating research communication, and limited time and space are all likely to result in care homes being unable or unwilling to participate. Overall, this paper demonstrates that care homes face several barriers to research participation, and efforts to improve relationships, raise awareness of the research process and provide flexible solutions for structural challenges are needed. Future research needs to be mindful of these challenges in order to facilitate research relating to COVID-19 and more generally in gerontology and dementia.
(Edited publisher abstract)
Subject terms:
participatory research, care homes, participation, social inclusion, dementia, user views, staff views, research methods;
Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multi-morbidities presents critical challenges for home care worldwide. Health-care systems struggle to provide adequate home-care services, delivering limited care restricted to a single...
(Edited publisher abstract)
Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multi-morbidities presents critical challenges for home care worldwide. Health-care systems struggle to provide adequate home-care services, delivering limited care restricted to a single-condition focus. This study explored the experiences and expectations of home care from the multiple perspectives of people living with dementia and multi-morbidities and home-care workers providing support. Findings draw from qualitative semi-structured interviews with people with dementia (N = 2), their partners (N = 2), other partners or family carers (N = 6) and home-care workers (N = 26). Three themes are identified: (a) the preference for and value of home; (b) inadequate home-care provision and enhanced care burden; and (c) limited training and education. Despite continued calls for home-care investment, the focus on reduction in costs hides key questions and further dialogue is required exploring how people with dementia can be supported to live independently and flourish at home. This study considers these complex experiences and care requirements through the prism of disability and human rights frameworks. This paper concludes with consideration of more recent human social rights debate and discusses critically what this may mean for people living with dementia and consider the implications for co-requisite policy development to optimise available home-care support.
(Edited publisher abstract)
Subject terms:
comorbidity, dementia, independent living, home care, rights based approach, user views, carer views, staff views;
Background and Objectives: Persons living with dementia, including long-term care residents, and their care partners emphasize the importance of meaningful engagement and stress the need for activity and opportunities to go outdoors or offsite. Yet, little is known about getting out in this population. Here, our objectives are to (a) identify residents' opportunities for, and experiences...
(Edited publisher abstract)
Background and Objectives: Persons living with dementia, including long-term care residents, and their care partners emphasize the importance of meaningful engagement and stress the need for activity and opportunities to go outdoors or offsite. Yet, little is known about getting out in this population. Here, our objectives are to (a) identify residents' opportunities for, and experiences with, getting out; (b) understand the significance of getting out; and (c) explain influential factors. Research Design and Methods: Guided by grounded theory methods, we analyzed qualitative data collected over a 1-year period in 4 diverse assisted living communities. We followed 33 residents with dementia and their care partners. Data include detailed fieldnotes capturing 1,560 observation hours, 114 interviews with residents (where possible), assisted living staff, family members, and other visitors, and record review. Results: We identified the centrality of "being out in the world and negotiating connections," which characterizes residents' experiences with the outside world as a process of "working out" engagement with nature, others, and the community. Being out in the world was consequential to well-being and quality of life. Most residents got out at least occasionally; some lacked opportunities. Among residents who got out, most benefitted from ensuing connections. Yet, not all experiences were positive. Being out in the world varied over time and by individual-, care convoy-, assisted living community-, and neighborhood-level factors. Discussion and Implications: We discuss the implications of our findings for research and practice surrounding meaningful engagement among persons with dementia, including during crises such as the pandemic.
(Edited publisher abstract)
Subject terms:
Alzheimers disease, dementia, activities of daily living, leisure activities, day services, residents, user views, participation;
N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens...
(Edited publisher abstract)
Background and Objectives: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
(Edited publisher abstract)
Subject terms:
older people, carers, decision making, literature reviews, user views, participatory research, cognitive impairment, research ethics, dementia, user participation;
Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs...
(Edited publisher abstract)
Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs after a diagnosis of young-onset dementia (YOD). Research Design and Methods: Five electronic databases were searched for qualitative articles from inception to January 2020. Qualitative data were extracted from included articles and synthesized across articles using taxonomic analysis. Results: A total of 486 articles were obtained through the database and hand searches, and 322 articles were screened after the removal of duplicates. Sixty studies met eligibility criteria and are included in this meta-synthesis. Four themes emerged through meta-synthesis: (a) common psychosocial stressors experienced by both PWDs and CGs, (b) unique psychosocial stressors experienced by either PWDs or CGs, (c) common adaptive coping strategies employed by both PWDs and CGs, and (d) unique adaptive coping strategies employed by either PWDs or CGs. Within each meta-synthesis theme, subthemes pertaining to PWDs, CGs, and dyads (i.e., PWD and CG as a unit) emerged. Discussion and Implications: The majority of stressors and adaptive coping strategies of PWDs and CGs were common, supporting the use of dyadic frameworks to understand the YOD experience. Findings directly inform the development of resiliency skills interventions to promote adaptive coping in the face of a YOD diagnosis for both PWDs and CGs.
(Edited publisher abstract)
Subject terms:
literature reviews, qualitative research, carer views, user views, young onset dementia, coping behaviour, stress, psychosocial approach;
Background and Objectives: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial...
(Edited publisher abstract)
Background and Objectives: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial support resources. Research Design and Methods: We conducted live video dyadic interviews with couples (persons with YOD and spousal caregivers together; N = 23 couples). We transcribed interviews and coded data based on a hybrid deductive-inductive approach, with the structure of the coding framework informed by the stress and coping framework, and all codes derived from the data. We derived themes and subthemes related to psychosocial stressors and adaptive coping. Results: We identified 5 themes related to psychosocial stressors: the impact of diagnosis, social and family relationships, changing roles and responsibilities, planning for an uncertain future, and couple communication and relationship strain. We identified 7 themes related to adaptive coping strategies: processing emotions and cultivating acceptance, promoting normalcy, efforts to preserve persons with YOD's independence and identity, collaborative and open communication, social support, meaning-making, humor, and positivity, and lifestyle changes and self-care. Discussion and Implications: We replicated several themes regarding stressors and adaptive coping strategies from prior YOD research and identified novel themes and subthemes related to dyadic stressors, sources of couples' relationship strain, and the ways in which couples effectively cope with YOD. Findings inform the development of dyadic interventions to reduce YOD-related distress for both persons with dementia and spousal caregivers.
(Edited publisher abstract)
Subject terms:
carer views, young onset dementia, psychosocial approach, partners, diagnosis, stress, coping behaviour, family relations, qualitative research, user views;
Health and Social Care in the Community, 30(3), 2022, pp.908-917.
Publisher:
Wiley
Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups...
(Edited publisher abstract)
Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group-specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.
(Edited publisher abstract)
Subject terms:
user views, dementia, user participation, research, older people, informal care, carer views, participatory research;