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.

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.

'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.

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.

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.

Care professionals' understanding of the new criminal offences created by the Mental Capacity Act 2005.

OBJECTIVES: Implemented in 2007, the Mental Capacity Act (MCA) 2005 codified decision-making for adults unable to make decisions for themselves in England and Wales. Among other changes, two new offences of wilful neglect and ill-treatment were created under Section 44. Our study explored how the MCA was being implemented in community-based dementia care, focusing on frontline practice. METHOD: Using qualitative longitudinal methodology, we interviewed 279 practitioners, in the London and South-East area of England, two or three times over 3 years. We applied framework analysis to identify and delineate recurrent themes. RESULTS: Views of the new offences were positive overall, but understanding ranged from partial to non-existent among some participants. CONCLUSIONS: Clinicians may be increasingly called upon to provide advice on whether an alleged victim or perpetrator lacks decision-making capacity in cases of suspected elder abuse. They need to be aware of the new criminal offences to ensure that people with dementia, among others, are not abused and that abusers are brought to account.

Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales.

OBJECTIVES: Ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties. METHOD: A systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included. RESULTS: Searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawton's model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimer's Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementia's QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested. CONCLUSION: The lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.

Negotiating a labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia.

OBJECTIVES: There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers. METHODS: Qualitative interviews with 27 people with cognitive impairment and 26 carers (20 dyads) using four memory services before and after diagnosis disclosure were conducted. Interview transcripts were subject to constant comparative analysis and interpretations subject to discussion at regular 'analysis clinics'. RESULTS: Twelve sub-themes were identified along four points on the assessment journey. Feelings of confusion, uncertainty and anxiety over interminable waiting times dominated. Participants often felt without support to manage their uncertainties, emotions and did not know where to turn for support. Some were highly critical of the systemic process of assessment and diagnosis disclosure but were generally positive of the practice of individual professionals. CONCLUSIONS: Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers.

'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.

Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.

BACKGROUND: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. METHODS: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. RESULTS: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. CONCLUSIONS: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

"Capacity is key": investigating new legal provisions in England and Wales for adult safeguarding.

This study aimed to investigate the views and experiences of local Safeguarding Adults Coordinators of the newly implemented Mental Capacity Act 2005. This legislation in England and Wales has both protection and empowerment as its dual goals. Fifteen Safeguarding Adults Coordinators (SACs) employed by local authorities in the London area were interviewed in 2008, and again 2 years later. A total of 12 SACs participated in the 2010 follow-up interviews. The findings are reported here, covering experiences and views on the implementation and uses of the Act. There was overwhelming support for the Act as enhancing people's rights to a life free from abuse, of providing a framework for the assessment of decision-making capacity, and of assisting practitioners in reducing risks and responding to abusive situations. Participants urged better publicity about the Act, more detailed guidance on the new offenses, and greater attention to the interactions with other government policy goals.

'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.

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.

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.

When the profession becomes personal: dementia care practitioners as family caregivers.

BACKGROUND: Little is known about the impact of caring experience on the practice of dementia care professionals. Few research studies covering dementia practice ask about personal experiences of providing care or having a family member with dementia. In England and Wales, the Mental Capacity Act (MCA) 2005 provided a new legal framework for planning and decision-making in the event of possible loss of capacity. Professional activities in this area include advice and assistance with arranging proxy decision-making, establishing wishes, and advance decisions. The aim of this paper is to present interview data from dementia care professionals with family experiences of dementia and their reflections on decision-making frameworks. METHODS: A total of 123 dementia care professionals working in community and care home settings were interviewed (2007-2010) about their experiences and expectations of the MCA 2005. Additional questions covered experiences of being family members or carers of a person with dementia and any use of the planning and decision-making provisions of the MCA in personal and family contexts. Data were analyzed thematically. RESULTS: Seventy practitioners had experience of family members with dementia and family caring. Decision-making and planning were viewed as easier under the MCA but tensions could arise around loss of decision-making capacity or family dispute. Empathy for caregiving situations and how things could have been different were reflected upon. CONCLUSIONS: Trainers, clinical supervisors, and researchers in dementia care may build upon personal experience of some practitioners to promote empathy with other family carers and the provision of timely information and advice.

Responding to the financial abuse of people with dementia: a qualitative study of safeguarding experiences in England.

BACKGROUND: The risks of financial exploitation and abuse of people with dementia remain under-researched. Little is known of the views of those responsible for local adult safeguarding systems about prevention and redress. We explore current repertoires of responses of such persons and consider barriers and facilitators to minimizing risks of financial abuse for people with dementia. METHODS: Fifteen qualitative interviews were undertaken with a purposively sampled group of Adult Safeguarding Co-ordinators in England in 2011. Framework analysis delineated themes in the transcripts; these were included in an iteratively developed coding framework. RESULTS: Five themes were explored: (1) incidence of financial abuse; (2) impact of dementia on safeguarding responses; (3) warning signs of financial abuse, including neglect, unpaid bills, limited money for provisions; (4) encouraging preventive measures like direct debit to pay for bills, advance care plans, appointing Lasting Power of Attorney; and (5) barriers and facilitators in safeguarding, including the practice of financial agencies, cultural barriers, other systemic failures and facilitators. Not all systems of financial proxies are viewed as optimally effective but provisions of the Mental Capacity Act 2005 were welcomed and seen as workable. CONCLUSIONS: Healthcare professionals may need to be more alert to the signs and risks of financial abuse in patients with dementia both at early and later stages. Engaging with safeguarding practitioners may facilitate prevention of abuse and effective response to those with substantial assets, but the monitoring of people with dementia needs to be sustained. In addition, professionals need to be alert to new risks from electronic crime. Researchers should consider including financial abuse in studies of elder abuse and neglect.

'More of a leg to stand on': views and usage of the Mental Capacity Act 2005 among staff of local Alzheimer's Society and carer organisations.

OBJECTIVES: The Mental Capacity Act (MCA) 2005 was implemented in 2007 in England and Wales. It offers new opportunities for people to plan for any future loss of capacity and provides a framework for decision-making on behalf of people lacking capacity. This article explores the challenges staff in local voluntary organisations focusing on dementia and carers face when they offer information and advice connected to possible loss of decision-making capacity to people with dementia and carers. METHOD: A set of 17 qualitative interviews were undertaken with a purposively sampled voluntary sector staff in London in 2008-09. Framework analysis was used to delineate themes in the transcripts and identified themes were included in the iteratively developed coding framework. RESULTS: Interviews revealed that voluntary sector staff generally perceived the Act as largely benefiting people with dementia in the exercise of their rights. They also thought that carers would benefit from the Act's provisions, whilst their own involvement in advice, information-giving and referral to other sources of expertise in relation to the MCA differed according to their role and confidence. Voluntary sector staff's capability and interest in using the MCA vary; there should be no presumption of detailed knowledge, and resources relevant to the MCA might be need to be coordinated more effectively by this sector. CONCLUSION: Ongoing training, local coordination and auditing seem warranted. These could encompass the new safeguarding provisions of the MCA which may need to be highlighted as part of the welcome extension of rights conferred by the MCA.

Challenges and expectations of the Mental Capacity Act 2005: an interview-based study of community-based specialist nurses working in dementia care.

AIMS: This study aimed to explore experiences of specialist community nurses providing information about the Mental Capacity Act and supporting people with dementia and carers. BACKGROUND: The role of specialist community nurses and case managers, such as Admiral Nurses, suggests that providing information about the recent Mental Capacity Act (2005) in England and Wales would be appreciated by people with dementia and carers and would assist in assessment and support. DESIGN: In-depth qualitative methodology was adopted to explore experiences and opinions of Admiral Nurses using the Mental Capacity Act. METHOD: A volunteer sample of 15 Admiral Nurses were interviewed in 2008 about their experiences of explaining the legal framework to carers and people with dementia and expectations of the Act. Thematic analysis identified textual consistencies in the interviews. RESULTS: Most participants reported positively about the Mental Capacity Act and considered it beneficial when working with people with dementia and carers. Specific themes included knowledge acquisition and training, alongside limited confidence with implementation; practice experiences in the community and the empowering nature of the Mental Capacity Act; practice expectations and challenges with implementation. CONCLUSION: The Mental Capacity Act has potential for supporting the safeguarding and empowerment role of community nurses. However, not all participants felt confident using it and speculated this would improve with greater familiarity and use, which should be facilitated by refresher training and supervision. RELEVANCE TO CLINICAL PRACTICE: The article concludes that nurses providing support to carers and of people with dementia may need greater familiarity about legal provisions. This may assist them in providing general information, making timely referrals to sources of specialist legal advice, and in using the Act to reduce anxiety, conflict and disputes.