Reducing refusals of care through improved personal care interactions between caregivers and people with dementia: protocol for a realist synthesis.

Introduction: People with dementia develop progressive difficulties conducting basic activities of daily living, often requiring considerable assistance from caregivers. Many people with dementia, particularly in the advanced stages, can refuse assistance with care leading to difficult interactions. The ways in which refusals of care can be best reduced are unknown.

Sleep disturbance in people living with dementia or mild cognitive impairment: a realist review of general practice.

Background: Sleep disturbance is a prevalent condition among people living with dementia (PLwD) or mild cognitive impairment (MCI). Its assessment and management within primary care is complex because of the comorbidities, older age, and cognitive impairment typical of this patient group.

Aim: To explore how primary care clinicians assess, understand, and manage sleep disturbance for PLwD or MCI; if and why such initiatives work; and how people and their carers experience sleep disturbance and its treatment.

Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers.

Background And Objectives: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved.

Activity provider-facilitated patient and public involvement with care home residents.

Background: In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes.

Inclusion of adults with conditions that have the potential to affect capacity and or communication in research: triangulation from a mixed-methods study of current practice and values across multiple stakeholders.

Objectives: We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005.

Design: The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings.

Piloting of a minimum data set for older people living in care homes in England: protocol for a longitudinal, mixed-methods study.

Introduction: Health and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes' Adoption and use study has developed a prototype minimum data set (MDS) for piloting.

Methods And Analysis: A mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points.

What are the factors associated with people with advanced dementia refusing assistance with personal care?

Background: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia.

Methods: A cross-sectional study using informant-based measures.

English care home staff morale and preparedness during the COVID pandemic: A longitudinal analysis.

Background: Staff actions to prevent infection introduction and transmission in long-term care facilities (LTCFs) were key to reducing morbidity and mortality from COVID-19. Implementing infection control measures (ICMs) requires training, adherence and complex decision making while trying to deliver high quality care. We surveyed LTCF staff in England about their preparedness and morale at 3 timepoints during the COVID-19 epidemic.

A suite of evaluation resources for Dementia Friendly Communities: Development and guidance for use.

Objectives: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England.

Methods: Fieldwork took place in six diverse case study sites across England.

How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?

Background And Objectives: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers' (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia.

Risks and risk mitigation in homecare for people with dementia-A two-sided matter: A systematic review.

Policy guidance promotes supporting people to live in their own homes for as long as possible with support from homecare services. People living with dementia who need such support can experience a range of physical and cognitive difficulties, which can increase the risks associated with homecare for this group. We aimed to examine risk and safety issues for people with dementia and their homecare workers and risk mitigation practices adopted by homecare workers to address identified risks.

Most Common Refusals of Personal Care in Advanced Dementia: Psychometric Properties of the Refusal of Care Informant Scale.

Background And Objectives: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviors such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusal of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviors.

How are adults with capacity-affecting conditions and associated communication difficulties included in ethically sound research? A documentary-based survey of ethical review and recruitment processes under the research provisions of the Mental Capacity Act (2005) for England and Wales.

Objectives: This study aimed to determine the characteristics of ethical review and recruitment processes, concerning the inclusion of adults with capacity-affecting conditions and associated communication difficulties in ethically sound research, under the provisions of the Mental Capacity Act (MCA, 2005) for England and Wales.

Design: A documentary-based survey was conducted focusing on adults with capacity-affecting conditions and associated communication difficulties. The survey investigated: (1) retrospective studies during the implementation period of the MCA (2007-2017); (2) prospective applications to MCA-approved Research Ethics Committees (RECs) during a 12-month period (2018-19); (3) presentational and linguistic content of participant information sheets used with this population.

Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles.

Reforms to social care in response to the COVID-19 pandemic, in the UK and internationally, place data at the heart of proposed innovations and solutions. The principles are not well established of what constitutes core, or minimum, data to support care home residents. Often, what is included privileges data on resident health over day-to-day care priorities and quality of life.

Contextual factors influencing complex intervention research processes in care homes: a systematic review and framework synthesis.

Background: Care homes are complex settings to undertake intervention research. Barriers to research implementation processes can threaten studies' validity, reducing the value to residents, staff, researchers and funders. We aimed to (i) identify and categorise contextual factors that may mediate outcomes of complex intervention studies in care homes and (ii) provide recommendations to minimise the risk of expensive research implementation failures.

Care Home and Home Care Staff's Learning during the COVID-19 Pandemic and Beliefs about Subsequent Changes in the Future: A Survey Study in Sweden, Italy, Germany and the United Kingdom.

The aim of this study was to compare perceptions of learning from the COVID-19 pandemic and beliefs in subsequent changes for the future, among care home and home care staff, in four European countries. A 29-item on-line questionnaire was designed in English and later translated into Swedish, Italian, and German on the impact of the pandemic on stress and anxiety. Anonymous data from care staff respondents was collected in four countries between 7 October 2020 and 17 December 2010: Sweden ( = 212), Italy ( = 103), Germany ( = 120), and the United Kingdom ( = 167).

Dementia-friendly communities: The involvement of people living with dementia.

Background: Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement.

The uptake and use of a minimum data set (MDS) for older people living and dying in care homes: a realist review.

Background: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care.

A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales: Recruitment of adults with capacity and communication difficulties.

Background: The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019.

Methods And Findings: We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA.

Organizational Support Experiences of Care Home and Home Care Staff in Sweden, Italy, Germany and the United Kingdom during the COVID-19 Pandemic.

The COVID-19 pandemic has affected care workers all over the globe, as older and more vulnerable people face a high risk of developing severe symptoms and dying from the virus infection. The aim of this study was to compare staff experiences of stress and anxiety as well as internal and external organizational support in Sweden, Italy, Germany, and the United Kingdom (UK) in order to determine how care staff were affected by the pandemic. A 29-item online questionnaire was used to collect data from care staff respondents: management ( = 136), nurses ( = 132), nursing assistants ( = 195), and other healthcare staff working in these organizations ( = 132).

Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales.

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales.

Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website.

Uptake and use of a minimum data set (MDS) for older people living and dying in care homes in England: a realist review protocol.

Introduction: Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents' medical history, care needs and preferences are collected and shared. This limits opportunities to understand the care home population, have a systematic approach to assessment and documentation of care, identifiy care home residents at risk of deterioration and review care.