Supporting family carers of people living with dementia through online education: a case study from an Irish NGO

The purpose of this research is to examine if and how an online education course offered by The Alzheimer Society of Ireland supports family carers of people living with dementia. The incidence of dementia is rising in Ireland and around the world. Much of the care for people living with dementia is undertaken informally by close family members. Caring for someone living with dementia can be very demanding. Family carers of people living with dementia require training and support to prepare and sustain them for the complex and changing nature of their role. This thesis considers Home Based Care Home Based Education one such online course. It is the first such Irish study of an online course aimed at supporting family carers of people living with dementia. This thesis uses a case study methodology with the online course being ‘the case’. With a convenience sampling strategy, it used multiple methods, first in the form of an anonymous online questionnaire, followed by 12 one-to-one interviews. Quantitative data was analysed using simple descriptive statistics. Qualitative data was examined using template analysis which is a form of ‘codebook’ thematic analysis. It is presented as a series of themes to answer the two research questions: (1) how does the course support dementia family carers, and (2) how can the course better support dementia family carers? Evidence suggests that the online course supports participants in a number of ways. Learners gained new knowledge and a range of practical skills through interactions with tutors, peers and course materials. However, participants offered suggestions on how to make the course more supportive to participants. Findings are presented which will be of assistance to The Alzheimer Society of Ireland as they continue to deliver online training for family carers of people living with dementia into the future

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Challenge Demcare: management of challenging behaviour in dementia at home and in care homes:Development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

Background: Dementia with challenging behaviour (CB) causes significant distress for caregivers and the person with dementia. It is associated with breakdown of care at home and disruption in care homes. Challenge Demcare aimed to assist care home staff and mental health practitioners who support families at home to respond effectively to CB. Objectives: To study the management of CB in care homes (ResCare) and in family care (FamCare). Following a conceptual overview, two systematic reviews and scrutiny of clinical guidelines, we (1) developed and tested a computerised intervention; (2) conducted a cluster randomised trial (CRT) of the intervention for dementia with CB in care homes; (3) conducted a process evaluation of implementation of the intervention; and (4) conducted a longitudinal observational cohort study of the management of people with dementia with CB living at home, and their carers. Review methods: Cochrane review of randomised controlled trials; systematic meta-ethnographic review of quantitative and qualitative studies. Design: ResCare – survey, CRT, process evaluation and stakeholder consultations. FamCare – survey, longitudinal cohort study, participatory development design process and stakeholder consultations. Comparative examination of baseline levels of CB in the ResCare trial and the FamCare study participants. Settings: ResCare – 63 care homes in Yorkshire. FamCare – 33 community mental health teams for older people (CMHTsOP) in seven NHS organisations across England. Participants: ResCare – 2386 residents and 861 staff screened for eligibility; 555 residents with dementia and CB; 277 ‘other’ residents; 632 care staff; and 92 staff champions. FamCare – every new referral (n = 5360) reviewed for eligibility; 157 patients with dementia and CB, with their carer; and 26 mental health practitioners. Stakeholder consultations – initial workshops with 83 practitioners and managers from participating organisations; and 70 additional stakeholders using eight group discussions and nine individual interviews. Intervention: An online application for case-specific action plans to reduce CB in dementia, consisting of e-learning and bespoke decision support care home and family care e-tools. Main outcome measures: ResCare – survey with the Challenging Behaviour Scale; measurement of CB with the Neuropsychiatric Inventory (NPI) and medications taken from prescriptions; implementation with thematic views from participants and stakeholders. FamCare – case identification from all referrals to CMHTsOP; measurement of CB with the Revised Memory and Behaviour Problems Checklist and NPI; medications taken from prescriptions; and thematic views from stakeholders. Costs of care calculated for both settings. Comparison of the ResCare trial and FamCare study participants used the NPI, Clinical Dementia Rating and prescribed medications. Results: ResCare – training with group discussion and decision support for individualised interventions did not change practice enough to have an impact on CB in dementia. Worksite e-learning opportunities were not readily taken up by care home staff. Smaller homes with a less hierarchical management appear more ready than others to engage in innovation. FamCare – home-dwelling people with dementia and CB are referred to specialist NHS services, but treatment over 6 months, averaging nine contacts per family, had no overall impact on CB. Over 60% of people with CB had mild dementia. Families bear the majority of the care costs of dementia with CB. A care gap in the delivery of post-diagnostic help for families supporting relatives with dementia and significant CB at home has emerged. Higher levels of CB were recorded in family settings; and prescribing practices were suboptimal in both care home and family settings. Limitations: Functionality of the software was unreliable, resulting in delays. This compromised the feasibility studies and undermined delivery of the intervention in care homes. A planned FamCare CRT could not proceed because of insufficient referrals. Conclusions: A Cochrane review of individualised functional analysis-based interventions suggests that these show promise, although delivery requires a trained dementia care workforce. Like many staff training interventions, our interactive e-learning course was well received by staff when delivered in groups with facilitated discussion. Our e-learning and decision support e-tool intervention in care homes, in its current form, without ongoing review of implementation of recommended action plans, is not effective at reducing CB when compared with usual care. This may also be true for staff training in general. A shift in priorities from early diagnosis to early recognition of dementia with clinically significant CB could bridge the emerging gap and inequities of care to families. Formalised service improvements in the NHS, to co-ordinate such interventions, may stimulate better opportunities for practice models and pathways. Separate services for care homes and family care may enhance the efficiency of delivery and the quality of research on implementation into routine care. Future work: There is scope for extending functional analysis-based interventions with communication and interaction training for carers. Our clinical workbooks, video material of real-life episodes of CB and process evaluation tool resources require further testing. There is an urgent need for evaluation of interventions for home-dwelling people with dementia with clinically significant CB, delivered by trained dementia practitioners. Realist evaluation designs may illuminate how the intervention might work, and for whom, within varying service contexts

Dementia friendly flying: investigating the accessibility of air travel for people living with Dementia

A diagnosis of dementia should not mean the end of a person’s ability to participate in meaningful activities. However, accessibility for people living with dementia requires improvement across a range of settings. Anecdotal evidence and critical incident reporting suggests that air travel is not meeting the needs of people with dementia, although evidence-based research into air travel and dementia is extremely limited. This research bridges the gap in the evidence-base on the accessibility of air travel for people living with dementia from within the United Kingdom by: 1) Exploring the experiences of air travel of 10 people living with dementia and 10 travel companions of people living with dementia through a series of in-depth phenomenological interviews. Findings identified the importance of a positive social environment, airport special assistance as both a barrier and a facilitator, challenges within the general airport environment and the need for continuity of support at transit points and upon arrival at the destination. 2) Conducting a realist synthesis of the best practice elements of dementia awareness and support training outside of the field of healthcare. Core training components included the importance of sector specific leadership to facilitate engagement, the need for contact education to reduce fear of the unknown and to challenge stigma and the inclusion of ongoing peer support and evaluation to facilitate long-term change. The findings from both studies are presented within a series of recommendations for how the air travel experience can be improved for people living with dementia and those who travel with them in the future. A detailed framework for the future design of context specific dementia awareness and support training is also outlined. The framework not only identifies what key mechanisms may work in such training, but also provides a rationale as to why these mechanisms may work

Care and the City

Care and the City is a cross-disciplinary collection of chapters examining urban social spaces, in which caring and uncaring practices intersect and shape people’s everyday lives. While asking how care and uncare are embedded in the urban condition, the book focuses on inequalities in caring relations and the ways they are acknowledged, reproduced, and overcome in various spaces, discourses, and practices. This book provides a pathway for urban scholars to start engaging with approaches to conceptualize care in the city through a critical-reflexive analysis of processes of urbanization. It pursues a systematic integration of empirical, methodological, theoretical, and ethical approaches to care in urban studies, while overcoming a crisis-centered reading of care and the related ambivalences in care debates, practices, and spaces. These strands are elaborated via a conceptual framework of care and situated within broader theoretical debates on cities, urbanization, and urban development with detailed case studies from Europe, the Americas, and Asia. By establishing links to various fields of knowledge, this book seeks to systematically introduce debates on care to the interconnecting fields of urban studies, planning theory, and related disciplines for the first time

Development of an intervention to improve the management of behavioural and psychological symptoms of dementia in general practice in Ireland

Background General practitioners (GPs) play a pivotal and increasing role in the care of people with dementia. However, GPs are challenged by the complexities of dementia care. A triangulated educational needs analysis conducted by the PREPARED project identified that GPs find the management of behavioural and psychological symptoms of dementia (BPSD) a particularly challenging aspect of dementia care. BPSD encompasses a wide range of non-cognitive symptoms such as anxiety and hallucinations that affect people with dementia. Although BPSD has been identified as a challenging area for GPs, an area in which they lack confidence, we do not have a good understanding of why this is a challenging area for GPs or the root causes of their lack of confidence. Furthermore, evidence suggests that current management of BPSD is sub-optimal. In BPSD non-pharmacological strategies are recommended first-line but uptake of these strategies is low. Despite their adverse effects, potentially harmful pharmacological treatments, such as antipsychotics, are frequently employed. Interventions are needed to improve the management of BPSD. It is apposite that these interventions should target GPs. However, interventions to date to improve the management of BPSD have either not targeted GPs or not effectively involved GPs in intervention development, a notable gap in the literature. Aim To enhance our understanding of the management of BPSD in general practice with a view to informing a theoretically-based, behaviour change intervention to improve the management of BPSD. Methods This was a mixed methods study underpinned by the UK Medical Research Council (MRC) guidance on the development of complex interventions in health care. Existing evidence on GPs’ knowledge of, attitudes towards and experiences with BPSD was systematically reviewed using a mixed methods approach and synthesised using meta-ethnography. Findings of this review were supplemented with new evidence from three studies. A descriptive interpretive qualitative study which explored GPs experiences of managing BPSD. The data collected from 16 semi-structured interviews with a purposively selected sample of GPs were then thematically analysed. The second study was a cross-sectional descriptive study which assessed GPs’ knowledge of and attitudes towards pain in dementia, a key trigger for BPSD. In this study, a postal questionnaire was sent to a census sample of all GPs in Cork. The results were statistically analysed to explore associations between demographic data and responses. To further investigate the findings of the qualitative study a descriptive cross-sectional study was conducted that aimed to explore the knowledge and attitudes of GPs to the prescribing of antipsychotics in people with dementia. The study used an anonymous postal questionnaires that was sent to a census sample of all GPs based in Cork and Kerry. To develop the intervention, results from the systematic review, the qualitative and the two cross-sectional studies were integrated, using the behavioural change theoretical approach outlined in the Behaviour Change Wheel (BCW). In addition, a modified eDelphi study was conducted with multidisciplinary experts on antipsychotic prescribing in dementia. The eDelphi study helped to achieve consensus on the clinical components of the intervention. Findings The over-arching finding from the systematic review was that a lack of practical, implementable non-pharmacological treatment strategies created a therapeutic void for GPs, which led to over-reliance on family caregivers and on psychotropic medications. In the qualitative study some GPs described the challenges of managing BPSD as insurmountable and many struggled at an ethical level with the decision to prescribe potentially harmful psychotropic medication but felt they had little else to offer. Key challenges identified by GPs were; stretched resources, unrealistic expectations and a lack of implementable clinical guidelines. The cross-sectional descriptive study of GPs’ knowledge of and attitudes towards the management of pain identified aspects of GPs’ management of pain in dementia that could be improved upon and highlighted the importance of good relationships between GP and nursing home staff when managing dementia. The descriptive cross-sectional study of GPs’ attitudes towards antipsychotic prescribing in dementia found that the majority of GPs recommended non-pharmacological strategies first line when managing BPSD. The GPs reported that the main influencers of prescribing antipsychotics in BPSD were nursing staff and family. Of note the majority of respondents did not routinely monitor antipsychotic prescribing in people with dementia Using the approach outlined in the Behaviour Change Wheel the findings of these four studies were used to select an aspect of GPs’ behaviour in the management of BPSD to target with an intervention: ‘GPs to systematically monitor their prescribing of antipsychotic medication to people with dementia in nursing home settings’. To address this behaviour, a three-component intervention was developed, consisting of: an interprofessional educational session with GPs and nursing home staff; a repeat prescribing monitoring tool and the facilitation of a self-audit. Conclusion The research presented in this thesis adds depth to existing literature and advances our knowledge of the management of BPSD in general practice. Prior to this research it was known that GPs found BPSD challenging but the reasons for why GPs found BPSD to be challenging had not been explored. This research offers new insights into GPs’ perspectives on the management of BPSD. This new insight helps to explain apparent discrepancies between best practice recommendations in BPSD and real-life clinical practice. This deeper understanding of GPs’ management of BPSD informed the development of an intervention to improve an aspect of BPSD management that was identified as being sub-optimal. The intervention developed focuses on GP self-monitoring of their prescribing of antipsychotic medication to people with BPSD in nursing home settings. This intervention has the potential to improve GPs’ management of BPSD