Jill Manthorpe

Jill Manthorpe
King's College London | KCL · Social Care Workforce Research Unit

MA Social Policy; BA English

About

914
Publications
135,226
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
11,222
Citations
Additional affiliations
January 2003 - December 2013
King's College London
January 1995 - December 2010
The University of Hull

Publications

Publications (914)
Article
Full-text available
Objective To explore the experiences and challenges of people with Parkinson’s and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. Design Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. Setting/participa...
Article
Summary Vulnerability is an underexamined concept in social work. Scholarly activity principally concentrates on policy analysis and theoretical debate; less attention is given to lived experience of vulnerability from the perspectives of particular groups, impoverishing understanding of the phenomenon. This article presents findings from the first...
Article
Stress and mental health are among the biggest causes of sickness absence in the UK, with the Social Work and Social Care sectors having among the highest levels of stress and mental health sickness absence of all professions in the UK. Chronically poor working conditions are known to impact employees' psychological and physiological health. The sp...
Article
Full-text available
Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experienc...
Article
Full-text available
Background Frailty is clinically associated with multiple adverse outcomes, including reduced quality of life and functioning, falls, hospitalisations, moves to long-term care and mortality. Health services commonly focus on the frailest, with highest levels of need. However, evidence suggests that frailty is likely to be more reversible in people...
Article
Full-text available
Introduction: COVID-19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this,...
Article
Full-text available
Self‐neglect and hoarding are behaviours that are hard to define, measure and address. They are more prevalent among older people because of bio‐psycho‐social factors, which may be exacerbated by advancing age. This paper aims to further understandings of self‐neglect and hoarding in England's Care Act 2014 context, drawing on a study involving qua...
Article
Full-text available
Objectives: The experience of providing/receiving intimate continence care between family members can be difficult and emotive. Often, for people living with dementia this seems an area of care overlooked by professionals. This study investigated the experiences of intimate continence care for people living with dementia and their family member (t...
Article
Full-text available
Internationally there has been much interest in the impact of the COVID-19 pandemic on the care and support of older people including those with needs arising from self-neglect and/or hoarding. During the pandemic English local authorities’ legal duties remained to respond to concerns about harm about people with care and support needs living in th...
Preprint
Eating and drinking difficulties are common in dementia, but little is known about the experiences of ethnic minority groups managing these difficulties at home. We undertook qualitative semi-structured interviews, exploring the meaning of food, the impact of dementia on eating and drinking and carers’ experiences of support. Interviews were audio-...
Article
Background As the organisation of health and social care in England moves rapidly towards greater integration, the resulting systems and teams will require distinctive leadership. However, little is known about how the effective leadership of these teams and systems can be supported and improved. In particular, there is relatively little understand...
Article
An understanding of the psychosocial impact of deafblindness on older people is impoverished by a dearth of research in the field. Particularly limited are studies adopting a salutogenesis perspective, in which older deafblind people's coping capacities are explored. Much research focuses on vulnerability to unfavourable outcomes, which may perpetu...
Article
Purpose The involvement of patients or members of the public within public health, health and social care and addictions services is growing in the UK and internationally but is less common in gambling support services. The purpose of this study was to explore Patient and Public Involvement (PPI) infrastructures and engagement channels used in heal...
Article
Easements to the Care Act 2014 were introduced in England in Spring 2020 to support local authorities (LAs) who were dealing with the impact of COVID-19 on adult social care. They were adopted by a small number of LAs that only kept them in place for a very short period. This article draws on the limited literature covering easements and on a synth...
Article
Full-text available
Introduction: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid-19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health...
Article
Full-text available
Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client...
Article
Full-text available
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 Cov...
Article
Full-text available
Background and objectives We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme)...
Article
Full-text available
Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnost...
Article
Full-text available
Background Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social...
Article
Full-text available
Purpose The aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia. Methods We undertook 100 h of participant observations with homecare workers (n = 16) supporting people living with dementia (n = 17); and 82 qualitative interviews with people living with dementia (n =...
Research
Full-text available
This is a two-page decision guide about nutrition and hydration for people with severe dementia during acute hospital admissions. The decision guide aims to help family carers and hospital professionals have conversations and make decisions. This guide was co-designed using the latest evidence, guidelines and interviews/workshops with people with m...
Article
Background: Growing numbers of interventions are being developed to support families living with dementia, but the extent to which they address the issues of most importance to people living with dementia and their carers is unclear. The aim of this review is to synthesise the best available qualitative evidence on the outcomes valued by (a) peopl...
Article
Full-text available
Introduction: Health and social care services in England are moving towards greater integration, yet little is known about how leadership of integrated care teams and systems can be supported and improved. This realist review explores what works about the leadership of integrated care teams and systems, for whom, in what circumstances and why. Me...
Article
Context: Many day centres for homeless people remained open during the first national lockdown in England following the COVID-19 pandemic. Lacking any official guidance on how to adapt, day centres for homeless people had to navigate risks of infection and changes in the situation of homeless people during this time.Objective: This small study aime...
Article
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 cogn...
Preprint
Full-text available
Reports of Covid-19 pandemic related day centre closures impacting negatively on their attenders and family carers have fuelled a resurgence of interest in these services. The absence of detailed descriptions of this common, but often ‘invisible’, preventive service from the literature limits the evidence base since outcomes data without context ar...
Preprint
Full-text available
Reports of Covid-19 pandemic related day centre closures impacting negatively on their attenders and family carers have fuelled a resurgence of interest in day centres, a common, but often ‘invisible’, preventive service. The absence of detailed descriptions of these services from the literature limits the evidence base since outcomes data without...
Conference Paper
Full-text available
Background: Eating and drinking problems can arise at any point in dementia progression, especially at the later stages and the end-of-life. However, we know little about the perspectives of people living with dementia on how they might wish for such problems to be managed. Aims: This study aimed to understand the experiences and needs of older peo...
Article
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...
Article
The Care Act 2014 imposed new statutory duties on English local authorities in relation to family or informal carers and it broadened carers’ statutory entitlements to assessment, care and support, irrespective of eligibility for local authority funding of the person they care for. Despite this legislative framework, local authorities appear to be...
Article
Full-text available
Context: The impact of Covid-19 on people working as personal assistants (PAs) or directly employed care workers potentially affects not only themselves and their clients but sometimes clients’ family members or carers.Objectives: This interview-based study aimed to hear directly from PAs of their experiences during the pandemic to inform policy an...
Article
Full-text available
Background In 2013, 70% of people who were homeless on admission to hospital were discharged back to the street without having their care and support needs addressed. In response, the UK government provided funding for 52 new specialist homeless hospital discharge schemes. This study employed RAMESES II (Realist And Meta-narrative Evidence Synthese...
Article
Full-text available
Little is known of the experiences of directly employed care workers communicating with healthcare providers about the situations of their employers. We report findings from 30 in-depth semi-structured interviews with directly employed care workers in England undertaken in 2018–19. Findings relate to role content, communication with healthcare prof...
Article
Background: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is...
Article
Full-text available
Introduction Growing numbers of interventions are being developed to support people and families living with dementia, but the extent to which they address the areas of most importance to the intended recipients is unclear. This qualitative review will synthesise outcomes identified as important from the perspectives of people living with dementia...
Article
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: Qua...
Article
Full-text available
Background Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-l...
Conference Paper
Full-text available
People living with dementia can develop eating and drinking problems; however, their perspectives on such problems have not been widely canvassed. This study explored the perspectives of older people living with mild dementia about possible eating and drinking problems in the future. Semi-structured interviews were conducted with 19 people with mil...
Research
We report on a review of the international literature available in English (2015-20) focusing on Adult Social Care responses to self-neglect among older people. In addition, we discuss the national law and policy context in England provided by the Care Act 2014 and the Mental Capacity Act 2005. This review was undertaken as part of a study (2019-2...
Article
Full-text available
Purpose People experiencing homelessness often have complex needs requiring a range of support. These may include health problems (physical illness, mental health and/or substance misuse) as well as social, financial and housing needs. Addressing these issues requires a high degree of coordination amongst services. It is, thus, an example of a wick...
Article
Full-text available
As the COVID-19 pandemic continues to evolve around the world, it is important to examine its effect on societies and individuals, including health and social care (HSC) professionals. The aim of this study was to compare cross-sectional data collected from HSC staff in the UK at two time points during the COVID-19 pandemic: Phase 1 (May–July 2020)...
Article
Full-text available
Background Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. Objective This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. Design Qualitative study using...
Article
Full-text available
Background Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. In this ethnographic study, we explore the skills, training and support needs of homecare workers supporting people living with dementia. Research Design and Methods We conducted 82 interviews with people living...
Article
Full-text available
Context: Day centres have long traditions in social care in the United Kingdom and internationally. In England, they are provided by a mix of organisations, they are not regulated, and there is no national representative body. Research mainly focuses on centre attenders and carers. Frontline staff and volunteer perspectives are rarely reported. Ob...
Article
Full-text available
This paper reports and discusses the weekly Clapping for Carers – described as ‘front‐line heroes’ that took place across the United Kingdom during the first national lockdown of the coronavirus pandemic. Data are drawn from a UK‐wide online survey of health and social care workers, completed in May to July 2020. The survey received 3,425 responses...
Article
Full-text available
Objectives In response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. Methods We supplemented a rapid literatu...
Technical Report
Full-text available
This is the final report of the research
Article
Full-text available
The impacts on adult social work in England of the Covid-19 pandemic were sudden and are proving long-standing. In England, many social workers moved to home working and virtual contact with colleagues, managers, staff from other agencies and service users. A first national lockdown was followed by a lessening of restrictions, but a second wave sta...
Article
Full-text available
Background The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the exp...
Article
Full-text available
The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted...
Article
Purpose A multiagency approach to supporting and enhancing child welfare lies at the heart of policies and practice in England and many other countries. The assumption is that if professionals together from different disciplines share their knowledge and skills this will lead to better outcomes for children and their families. The COVID-19 pandemic...
Conference Paper
Full-text available
Background People living with dementia may experience difficulties with eating and drinking, affecting their nutrition and hydration throughout the dementia trajectory. Such difficulties increase towards the end-of-life causing a strain on family carers. The aim of this study was to understand the needs of family carers and professionals supporting...
Conference Paper
Full-text available
Background Family carers often struggle to support relatives living with dementia with nutrition and hydration towards the end-of-life. The aim of this study was to co-design with family carers and professionals an information resource to support family carers with this task. Methods This study consisted of four phases: 1) qualitative systematic r...
Article
Full-text available
Background: COVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of healthcare needs to hear from vulnerable populations, such as people living with dementia. Aim: To understand the remote healthcare experiences of patients living with dementia and their...
Article
Purpose The COVID-19 pandemic has shone a light on long-standing, structural race inequality in Britain. This paper aims to review historic patterns of ethnic diversity among the workforce employed in services for older people to present some of the lessons that can be learned from the pandemic. Design/methodology/approach A historical overview wa...
Article
Full-text available
Aims To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. Design Systematic review and narrative synthesis of qualitative studies. Data sources MEDLINE, Embase,...
Article
Full-text available
Background In Britain's National Health Service (NHS), medical consumerism is disliked by many doctors but managed by NHS leaders. Managed consumers have choices about treatment options, but are expected to help contain costs, improve quality of care, take part in clinical research and advocacy, and increase productivity. There are so many meanings...
Preprint
Objectives: In response to an NHS England enquiry, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the COVID-19 pandemic on dementia wellbeing and identify priorities for future research. Methods: We supplemented a rapid literature search (including unpublished, non-p...
Article
Full-text available
Background Inpatients experiencing homelessness are often discharged to unstable accommodation or the street, which may increase the risk of readmission. Methods We conducted a cohort study of 2772 homeless patients discharged after an emergency admission at 78 hospitals across England between November 2013 and November 2016. For each individual,...
Article
Full-text available
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-t...
Article
The functioning of a dementia healthcare triad, namely a person living with dementia, their (family) carer and their healthcare professional, is a recent focus of improving the understanding of relationships that are important in person‐centred care. Evidence was reviewed to synthesise qualitative research that included members of the triad to expl...
Article
Recent years have seen a re-emergence of international interest in relationship-based social work. This article uses children’s accounts of their relationships with social workers to build on previous research to promote children’s safety and well-being. Interviews were undertaken with 111 children aged six- to eighteen-years old across ten differe...
Article
Many people in England employ care workers using state funding or their own resources. This article explores working relationships, communications and experiences of personal assistants with their employers’ family members. Data from interviews with 105 personal assistants (in 2016–17) were analysed to explore relationships and experiences. Three o...
Article
Full-text available
Background: Good physical health monitoring can increase quality of life for people with dementia, but the monitoring may vary and ethnic inequalities may exist. Aim: To investigate UK primary care routine physical health monitoring for people with dementia by: (a) ethnic groups, and (b) comorbidity status. Design & setting: A retrospective co...
Article
Full-text available
Context: People with prior health conditions are susceptible to severe and sometimes fatal outcomes of the novel coronavirus SARS-CoV-2, that causes the disease COVID-19. The protection of the capacity of systems for social care was thus an important consideration for governments in the early stages of the global pandemic. Objectives: This paper re...
Article
Background: As a response to COVID-19 the population of England was asked to stay at home and work from there wherever possible. This included those working in children's social care (CSC) who have responsibility for child protection and other safeguarding duties. Objective: The study was designed to understand how CSC made the transition from b...
Article
Objectives: Concentrating post-diagnostic dementia care in primary care may lead to better and more cost-effective care closer to home. We aimed to assess which intervention components and contextual factors may contribute to the successful delivery and implementation of primary care-led post-diagnostic dementia care. Methods: Mixed-methods syst...
Article
Full-text available
Background Day centres are a substantial element of community-based support for older people in many countries. However, assumptions that they are an outdated or costly service model have resulted in many centre closures in England. The perspectives of 42 people attending, providing, making referrals to or purchasing places at four diverse day cent...
Article
This review explores international practice in hospital social work with older people through the lens of four different aspects of professional identity (self-identity and reported practice; professional characteristics; patient perspectives, and professional authority or power). It highlights the skills needed for hospital social work and the cha...