'I wasn't on the front line per se, but I was part of health care': Contributions and experiences of ancillary staff in care homes in England during the COVID-19 pandemic.

OBJECTIVES: Ancillary staff - cleaning, catering, housekeeping and laundry workers - play a crucial role in care homes, by promoting infection control, food preparation and hygiene, and contributing to the care home environment. This study sought to understand the experiences of ancillary staff working in English care homes during the COVID-19 pandemic. The results will inform policy makers, employers, care home managers and others, both in England and overseas, as how to best support the ancillary workforce. METHODS: Between March and August 2021, video and telephone interviews were conducted with those working or living in care homes in England. Participants comprised ancillary staff (n = 38), care home managers (n = 8), care home residents' family members and friends (n = 7), human resource managers (n = 5) and care home residents (n = 5). RESULTS: Ancillary staff often had increased responsibilities and contributed to pandemic efforts by changing working practices, routines and job roles with the aim of supporting residents and other staff. Teamwork, underpinned by strong leadership, helped ancillary staff feel supported. CONCLUSIONS: Ancillary staff should be better recognised as being central to care home care. They are essential workers helping to keep residents safe and well.

'You're out on a limb, on your own': Social care personal assistants' (PAs') reflections on working in the Covid-19 pandemic - implications for wider health and care services.

CONTEXT: In England, Personal Assistants (PAs) are part of an international trend towards state funded but client-hired or directly employed care workers. The Covid-19 pandemic highlighted and exacerbated pre-existing risks and advantages of this arrangement for both PAs and people with care and support needs. OBJECTIVES: We aim to report PAs' reflections on their experiences of working since the pandemic started in 2020 and highlight the longer-term implications for health and care services. METHODS: We undertook a large-scale, qualitative study in 2016-17 involving interviews with 104 PAs about their working lives. We re-interviewed PAs from this group twice to ask how the pandemic had affected them, once at the start of the pandemic in Spring 2020 and again in December 2021 -April 2022. This article reports findings from the last set of interviews undertaken with 38 PAs. Thematic analysis was conducted of interviews in which PAs discussed changes in tasks and responsibilities, pay and conditions, training, relationships and plans. FINDINGS: This article focuses on the following themes: PAs' perceptions of their outsider status; support and training needs; job security; and whether PAs have an appetite for regulation to provide greater professional standing and connections. LIMITATIONS: Interviews in this study were carried out during the Covid-19 pandemic over the telephone or virtually rather than in person so may have missed certain body language or informal relationship building. The sample may be under-representative of non-British PAs. We were unable to triangulate participants' accounts with others'. IMPLICATIONS: This study highlights the importance of national and local government including the PA workforce in planning for national emergencies. Consideration should be given by policy makers and local health and care systems to how PAs can be better supported than currently.

Models of care and the role of clinical pharmacists in UK primary care for older adults: A scoping review protocol.

INTRODUCTION: There has been global investment of new ways of working to support workforce pressures, including investment in clinical pharmacists working in primary care by the NHS in the England. Clinical pharmacists are well suited to support older adults who have multiple long-term conditions and are on multiple medications. It is important to establish an evidence base for the role of clinical pharmacists in supporting older adults in primary care, to inform strategic and research priorities. The aim of this scoping review is to identify, map and describe existing research and policy/guidance on the role of clinical pharmacists in primary care supporting older adults, and the models of care they provide. METHODS AND ANALYSIS: A scoping review guided by the Joanne Briggs Institute methodology for scoping reviews, using a three-step strategy. We will search Medline, CINAHL, Scopus, EMBASE, Web of Science, PSYCHInfo, and Cochrane for English language articles, from 2015 -present day. Grey literature will be searched using Grey Matters guidelines, the Index of Grey Literature and Alternative Sources and Resources, and Google keyword searching. References of all included sources will be hand searched to identify further resources. Using the Population, Concept and Context framework for inclusion and exclusion criteria, articles will be independently screened by two reviewers. The inclusion and exclusion criteria will be refined after we become familiar with the search results, following the iterative nature of a scoping review. Data will be extracted using a data extraction tool using Microsoft Excel and presented using a narrative synthesis approach. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Review findings will be disseminated in academic conferences and used to inform subsequent qualitative research. Findings will be published and shared with relevant local and national organisations.

Understanding factors influencing residential respite service use by carers of people living with dementia using Andersen's behavioural model of health services use: A qualitative study.

OBJECTIVES: Residential respite (RR) provides a valuable break for family carers, but little known about its offer, take-up or experiences of carers of people living with dementia. This paper aims to further understandings of factors influencing RR use. DESIGN: RR stakeholder workshop and qualitative interviews. SETTING: Stakeholder or living in the community in own home. PARTICIPANTS: RR stakeholders (13); family carers with experience of RR, or had declined it, or were planning to use it for the first time (n = 36). METHODS: Stakeholders participated in a workshop to discuss provision, models and funding of RR. Family carer interviews focused on expectations, experiences and outcomes of use of RR. Data were analysed thematically and mapped against Andersen's model of health service use. RESULTS: Identifying need for RR does not necessarily transpire into use. Planning and ease of booking were crucial for carers, but many felt there was little support with this. Systemic factors concerning funding, planning and booking RR act as barriers to its use. CONCLUSION: Findings highlight how systemic factors influence RR use. Discussing respite need in routine care planning or reviews may support carers and people living with dementia to consider RR, but system changes are needed to address barriers.

The mouth and oral health in the field of dementia.

An ageing population, an estimated 47 million people currently living with dementia, and predictions of a threefold increase in people living with a diagnosis by 2050 have led the WHO to declare dementia a public health priority. Emerging research also suggests that dementia is linked to poor oral health and that oral health declines alongside cognitive decline. Drawing on Bourdieu's concepts of field and capital, this paper presents an analysis of interview data from participants with dementia, carers and carer/diagnosed dyads participating in a qualitative study of the mouth and oral health. We argue that Bourdieu's conceptual toolkit provides a way of contextualising experiences of oral health within dementia and un-picking the multi-layered impact of structure, institutions, biology, resource mobilisation and self in the context of a progressive disease which ultimately challenges knowledge of the self and the ability to interact with the world around us.

Lessons learned from the impact of Covid-19 on the work of disability support organisations that support employers of social care personal assistants in England.

Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid-19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March-July 2021 with disability support organisation representatives. We identified one overarching theme 'Working to prevent and challenge marginalisation of PA employers', with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid-19. Remote working amplified the digital-divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid-hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre-pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed.

Developing effective workforce training to support the long-term care of older adults: A review of reviews.

This review of reviews aimed to identify and synthesise evidence to support the design of learning interventions for non-registered practitioners supporting older people in long-term care (people's own homes, hospices or residential/nursing care). Our objectives were to inform the analysis part of the Analysis, Design, Development Implementation and Evaluation framework by finding evidence on the following five components of learning: content, format (teaching strategies and resources/media), structure, contextual factors (barriers and enablers) and measures used when monitoring the effectives of learning. Databases searched included Pro-quest (ASSIA), Scopus, Ovid (PsycINFO, Medline, Embase and Social Policy and Practice), SCIE Online and Cochrane Reviews and reference searching, with the last search being conducted in April 2021. Fifteen papers were identified as eligible for inclusion. Most of the interventions aimed to improve dementia care (n = 10), with others exploring LGBT+ competency (n = 2), or other forms of professional development (n = 3). Common features of effective learning included a multifaceted approach, with in-practice learning being blended with additional implementation strategies (e.g. supervision) and didactic learning/worksheets. An important contextual factor was working within an organisational culture which supported shared learning and reflection. This may also help encourage engagement with training, where staff are unwilling to attend if it may compromise care delivery. Future research should focus on the characteristics of trainers and the structure of learning, with more research being needed in in mental and physical morbidities outside the remit of dementia to improve the overall quality of the social care workforce.

Is it worth it? Carers' views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic.

OBJECTIVES: The Covid-19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short-stay. We investigated impact of Covid-19 on views and expectations of carers of people living with dementia about residential respite. METHODS/DESIGN: Qualitative interviews with 35 carers were conducted March-December 2020: 30 women and 5 men, with ages ranging 30-83 years. Interviews explored experiences, views of residential respite, and expectations post-Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. RESULTS: Three themes were identified in transcripts, relating to impact of Covid-19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. CONCLUSIONS: Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid-19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt.

Factors affecting dementia care practitioners' decision-making on moves to a care home for persons living with dementia: A factorial survey.

Deciding if and when might be the 'optimal' time for a person living with dementia to move to a care home is often difficult for the individual, family and practitioners. In this study, we describe the outcome of a factorial survey conducted with 100 dementia care practitioners (a frontline health or social care worker who works with people living with dementia) in England, which investigated factors used in deciding when a person living with dementia moves to a care home. Using findings from qualitative interviews with older people living with dementia, family carers, care home managers and social workers, we identified four factors that appeared to influence the decision to move to a care home: (1) Family carers' ability to support the person with daily activities, (2) amount of support provided by home care workers, (3) level of risk of harm and (4) the person living with dementia's wishes. These factors were then randomised within skeleton vignettes that told the story of a fictitious woman (Jane) living with dementia at home with her husband. Fifty-four variations of the vignettes were produced and randomly assigned to 100 surveys. A total of 100 volunteer dementia care practitioners (78% female, 54% over 50 years of age) received their own personalised online survey link via email and were asked to read each vignette and decide whether to suggest Jane (a) move to a care home or (b) continue living at home. Results indicated that Jane's wishes principally drove most dementia care practitioners' decision on whether to suggest a move to a care home or stay living at home (odds ratio = 6.5-19.5). Findings will inform a better understanding of the factors that contribute toward a decision to move to a care home and be of relevance to policy, practice, training and support.

'The time has come': reflections on the 'tipping point' in deciding on a care home move.

OBJECTIVES: Often perceived as a last resort, a care home move for a person living with dementia is often undertaken when all other options have been exhausted. Deciding the right or optimal time is to move remains an important question for many families.To investigate factors that are weighed up in deciding to make a care home move. METHOD: Qualitative in-depth interviews with 21 family carers and 5 care home residents living with dementia in England. Thematic analysis was applied to all transcripts to extract key themes and sub-themes; a summation is provided here. RESULTS: Participants emotionally recollected an accumulation of stressors, exhausting other options of care, a risk/benefit analysis, wishes of person living with dementia, and a readiness to move as indicators of when a 'tipping point' was reached. They also felt strongly that early planning, prior experience of care homes, understanding funding arrangements and having support with decision-making would help. CONCLUSION: Deciding to move to a care home is complex, contextual and deeply personal. Early planning in the form of joining waiting lists, using day centres and respite services may help in creating relationships with intended care homes for the future. There is growing need for support with financial advice and funding arrangements, for both self- and publicly funded individuals.

Personal Assistants' role in infection prevention and control: Their experiences during the Covid-19 pandemic.

Personal Assistants (PA) or client-hired workers are directly employed by people needing care and support, often making use of government funding. In the context of Covid-19, questions emerged about how this workforce is supported to practice safely. This paper reports PAs' understanding and views of infection control during the early months of the Covid-19 pandemic in England. Telephone interviews were undertaken with 41 PAs between 16th April and 21st May 2020. PAs were recruited from a sample that had participated in a previous study in 2014-16. Interview questions focused on changes arising from the pandemic. Data were transcribed and analysed using Framework analysis. This paper focuses on PAs' perceptions of their role and responsibilities in preventing and managing infection. Arising themes were identified about barriers and facilitators affecting infection control in five areas: accessing information, social isolation, handwashing, hygiene, personal protective equipment and potential attitude to vaccines. Infection prevention and control are under-researched in the home care sector generally and efforts are needed to develop knowledge of how to manage infection risks in home settings by non-clinically trained staff such as PAs and how to engage home care users with these efforts, especially when they are the direct employers.

Everyday experiences of people living with dementia and their carers relating to oral health and dental care.

Little is known about how community-dwelling people with dementia, as well as their carers, look after their oral health and use dental care. This exploratory study aimed to explore the beliefs, experiences and practices about oral health of people living with dementia and their carers. We used an ethnographic qualitative approach conducting face-to-face interviews at home with people living with dementia and/or carers. Interview data and field notes were analysed thematically using framework methods. We approached volunteers registered with the online UK. Join Dementia Research network from whom a total of 17 participants were recruited in 2018. Five interviews were conducted with carers alone, two with a person living with dementia alone, and five with a carer and person with dementia jointly. Three main themes emerged: oral health is not prioritised; access to dental care is shaped by increasing disability; and the importance of continuity of care. While people living with dementia and their carers may view oral health important once prompted, many reported difficulties in undertaking or assisting with daily self-care and accessing dental services, particularly as dementia progresses. We draw out implications for the organisation and delivery of public and private dental services.

Professionals' views on the "optimal time" for people living with dementia to move to a care home.

OBJECTIVE: The decision about the best time for a person living with dementia to move to a care home involves the individual and others, particularly family. However, little is known about care professionals' views on the best time to move, particularly those with decision-making authority. This study investigated social workers' and care home managers' views on whether there is an "optimal time" for a move. METHODS: A qualitative, phenomenological approach was employed, using semi-structured interviews with 20 social workers and 20 care home managers in England; all with experience of advising people living with dementia about a care home move and making decisions about funding or acceptance. Interviews were audio-recorded, transcribed, and analyzed thematically. RESULTS: Four overarching themes emerged from the data: (1) staying at home for as long as possible but avoiding crisis, (2) balancing risks proactively and anticipating triggers, (3) desires for the person living with dementia to be involved in the decision, and (4) the significance of funding in enabling choices about a care home move. CONCLUSIONS: Deciding on the timing of a care home move is context and person specific. Two professional groups with substantial experience of this among their client group both recommended proactive deliberation but funding was overall the deciding factor in the extent to which they considered choice was possible. Future research should avoid seeing all care home moves as negative and explore how practitioners can best encourage discussions prior to crisis point about care home options.

Skill mix: The potential for personal assistants to undertake health-related tasks for people with personal health budgets.

Personal health budgets (PHBs) are being promoted in England as expanding the benefits of choice and control to individuals with healthcare needs. National Health Service (NHS) money is provided to eligible people to use as set out in approved care plans, including direct employment of personal assistants (PAs). The government plans to increase NHS-funded PHBs and to further introduce integrated personal budgets (IPBs). This potentially creates more demand for directly employed or self-employed PAs with health-related skills. The objective of this paper is to report findings from interviews with PAs (n = 105) and key informants (n = 26) from across England, undertaken between October 2016 and August 2017, about the potential for the PA workforce to undertake 'health-related' tasks as facilitated by the introduction of PHBs. PAs were purposefully recruited to ensure the sample included participants from different geographical locations. Key informants were purposefully selected based on their knowledge of policy and community services. Data were analysed quantitatively and qualitatively. This paper focuses on reporting qualitative findings, which are set within the theoretical framework of normalisation process theory to explore implementation challenges of PHBs. The majority (64%) of PAs confirmed that they saw their current roles as congruent with PHBs, were willing to engage with PHBs and undertake health-related tasks. However, 74% of PAs said they would need additional training if enacting such roles. Key informant interviews appraised the development of PHBs as complex, noting incongruences arising from NHS and social care-funded PAs carrying out similar roles within different organisational systems. We conclude the current PA workforce is willing to take on PHB work and is likely to interweave this with work funded by PBs and self-funding care users. Implications include the need for careful consideration of training requirements and delivery for PHB-funded PAs.

Gaps in Understanding the Experiences of Homecare Workers Providing Care for People with Dementia up to the End of Life: A Systematic Review.

This systematic review of the literature explores the perspectives and experiences of homecare workers providing care for people with dementia living at home up to the end of life. A search of major English language databases in 2016 identified 378 studies on the topic, of which 12 met the inclusion criteria. No empirical research was identified that specifically addressed the research question. However, synthesis of the findings from the broader literature revealed three overarching themes: value of job role, emotional labour and poor information and communication. The role of homecare workers supporting a person with dementia up to the end of life remains under-researched, with unmet needs for informational, technical and emotional support reported. The effective components of training and support are yet to be identified.

Constituents of effective support for homecare workers providing care to people with dementia at end of life.

OBJECTIVE: The aim of this study was to enhance understanding about homecare workers providing care to people with dementia at end of life by exploring homecare workers' perceptions of challenges and the support they needed and sometimes received. METHODS: Qualitative semi-structured interviews were conducted with 29 homecare workers and 13 homecare managers in England. Framework analysis was used to analyse the data. FINDINGS: Four overarching challenges were identified: working with clients with dementia, including clients' sometimes unpredictable responses, communication difficulties, and mood changes; caring for the dying; conflict with family members; and working alone, which often left homecare workers at risk of exhaustion, fatigue, and a sense of isolation. When their work entailed high levels of emotion, such as a client's death or getting embroiled in a client's family conflict, they felt emotionally drained, under-prepared, and overwhelmed. Supportive elements include receiving encouragement and learning from experienced peers and their feelings being acknowledged by managers at their employing homecare agency. Some workers were offered time off or encouraged to attend the client's funeral as a means of supporting the process of bereavement. CONCLUSIONS: Peer and manager support are essential and effective in coping with work pressures. There is a need to develop models of effective support to alleviate staff's practical, emotional, and interpersonal pressures. However, due to the isolating nature of homecare work, managers may not recognise early signs of their staff finding stress unmanageable and miss the opportunity to mitigate these negative effects.

Is there an "optimal time" to move to a care home for a person with dementia? A systematic review of the literature.

ABSTRACTBackground:There is limited evidence regarding how the decision evolves about whether and when it is best for a person with dementia to move to a care home. The factors leading to the timing of the decision remain particularly unclear. This systematic review of existing literature aims to gain an understanding of the decision-making timing and process to distinguish the drivers of these decisions, and to identify if there is an "optimal" or best time (if any) for a person with dementia to move to a care home. METHODS: Six English language electronic databases were searched up to the end of 2016, along with included papers' reference lists. Papers were screened against the inclusion criteria and rated for quality. Extracted data were thematically analyzed. RESULTS: The review identified 16 relevant papers. Seven themes were identified: (1) what happened before the move; (2) planning for the move, (3) weighing up the decision, (4) lack of support, (5) drivers of the decision, (6) emotional significance of the move, and (7) continued reflection on the decision. "Time" of the move was largely absent from much of the literature, although inferences were made. Overall, the decision-making process appeared to be cyclic, with family carers constantly re-evaluating when might be the time to make the move with some continuing to reflect on this even subsequently. CONCLUSIONS: Further research is required to understand the "optimal" or best time (if any) for when a person with dementia moves to a care home, and how to determine when someone is ready to move.

Person-centered dementia care: current perspectives.

Person-centered dementia care is widely accepted as a value-based commitment to supporting people with dementia and is a guiding principle in care services. Policy ambitions to put people at the center of their own care are being developed internationally. These may be seen as part of the evolution of person-centered care which has its origins in critical perspectives on practice and social responses to people with dementia. In England, one further development of person-centered care has been personalization - a government policy to extend individuals' choice and control over their social care and, latterly, ways to meet their health care needs. This paper charts the evolution of the concept of person-centered care to the policy of personalization (which has international comparators) and summarizes emerging and conflicting evidence about the implications of personal budgets in England on older people with mental health problems such as dementia and their families. It focuses on the evidence base of personalization and on emerging lessons for practice, drawing from the implementation of personalization and the adoption of personal budgets by this group. While personalization may be one policy initiative, the values and practices of person-centered dementia care remain fundamental to practice and are inspiring new ideas related to rights and justice for people with dementia.

Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia.

Across the world, an early and timely diagnosis of dementia is seen to be a policy and practice imperative and a necessary step in order to live well with the condition. However, limited understanding exists regarding the personal and relational meanings attributed to the diagnostic experience. Drawn from the findings of a larger multi-site study conducted in four areas of England, this article presents a subset of the data where five participants and their carers and two people living alone initially presented themselves at a memory clinic for diagnostic testing, with this presentation eventually resulting in a confirmed, and shared, diagnosis of dementia. All 12 participants were interviewed at two time points in the study: at the time of first presentation to the memory clinic and shortly after the diagnosis had been shared with them. Informed by the grounded theory method, constant comparative analysis was applied to the data and this process resulted in a four-phase sequential model of diagnostic transition: (1) becoming self-aware→seeking outside help; (2) being referred→receiving a clinic appointment; (3) undergoing tests→being told what's wrong; and (4) adjusting to the diagnosis→negotiating everyday expectations. Running through each phase was the core category of 'living with uncertainty' which summarised the entire diagnostic journey for all study participants. Findings suggest a need for better awareness and information for people living with dementia at all phases and time points in the condition, which may be fostered by embedding these in early clinical encounters.