BackgroundSleep disturbance (SD) is common among people living with dementia (PLwD) or mild cogni... more BackgroundSleep disturbance (SD) is common among people living with dementia (PLwD) or mild cognitive impairment (MCI). It has a significant impact on the wellbeing of PLwD and caregivers, and makes care at home more difficult. Within primary care, assessment and management of SD for this population is complex and challenging.AimTo identify what works, how, and for whom, in the assessment and management of SD for PLwD or MCI in primary care.MethodWe conducted a realist review to develop explanations of causal relationships, using context-mechanism-outcome configurations (CMOCs). An initial programme theory was iteratively tested and refined, using data from relevant literature and stakeholder feedback. The study followed RAMESES reporting quality.ResultsIn total, 71 papers from OECD countries were included for analysis, generating 19 CMOCs. Low awareness of SD and assessment methods resulted in underdiagnosis in primary care. Assessment and treatment of PLwD/MCI were, respectively, ...
Background Care homes are increasingly important settings for intervention research to enhance ev... more Background Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. Objective To identify care home intervention studies and describe the resident outcome measures used. Design Scoping review. Methods We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. Results From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using...
ObjectivesThis study aimed to determine the characteristics of ethical review and recruitment pro... more ObjectivesThis 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.DesignA 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.SettingStudies conducted and approved in England and Wales.SampleStudies focused on adults with the following capacity-affecting conditions: acquired brain injury; aphasia after stroke; autism; dement...
IntroductionThe increasingly ageing population is associated with greater numbers of people livin... more IntroductionThe increasingly ageing population is associated with greater numbers of people living with dementia (PLwD) and mild cognitive impairment (MCI). There are an estimated 55 million PLwD and approximately 6% of people over 60 years of age are living with MCI, with the figure rising to 25% for those aged between 80 and 84 years. Sleep disturbances are common for this population, but there is currently no standardised approach within UK primary care to manage this. Coined as a ‘wicked design problem’, sleep disturbances in this population are complex, with interventions supporting best management in context.Methods and analysisThe aim of this realist review is to deepen our understanding of what is considered ‘sleep disturbance’ in PLwD or MCI within primary care. Specifically, we endeavour to better understand how sleep disturbance is assessed, diagnosed and managed. To co-produce this protocol and review, we have recruited a stakeholder group comprising individuals with liv...
Objectives In the context of a growing number of dementia friendly communities (DFCs) globally, a... more 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. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. Results The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Chang...
Background and objectives Caregivers may encounter, or inadvertently cause, refusals of care by a... more 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. Research design and methods One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings Core to the caregiver experience of refusals of care was knowing the person. This underpinned five key themes identified as caregivers’ strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplify...
Background Care homes are complex settings to undertake intervention research. Barriers to resear... more 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. Methods We conducted a systematic review using a framework synthesis approach viewed through a complex adaptive systems lens. We searched: MEDLINE, Embase, CINAHL, ASSIA databases and grey literature. We sought process evaluations of care home complex interventions published in English. Narrative data were indexed under 28 context domains. We performed an inductive thematic analysis across the context domains. Results We included 33 process evaluations conducted in high-income countries, published between 2005 and 2019. Framework synthes...
BackgroundSleep disturbance (SD) is common among people living with dementia (PLwD) or mild cogni... more BackgroundSleep disturbance (SD) is common among people living with dementia (PLwD) or mild cognitive impairment (MCI). It has a significant impact on the wellbeing of PLwD and caregivers, and makes care at home more difficult. Within primary care, assessment and management of SD for this population is complex and challenging.AimTo identify what works, how, and for whom, in the assessment and management of SD for PLwD or MCI in primary care.MethodWe conducted a realist review to develop explanations of causal relationships, using context-mechanism-outcome configurations (CMOCs). An initial programme theory was iteratively tested and refined, using data from relevant literature and stakeholder feedback. The study followed RAMESES reporting quality.ResultsIn total, 71 papers from OECD countries were included for analysis, generating 19 CMOCs. Low awareness of SD and assessment methods resulted in underdiagnosis in primary care. Assessment and treatment of PLwD/MCI were, respectively, ...
Background Care homes are increasingly important settings for intervention research to enhance ev... more Background Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. Objective To identify care home intervention studies and describe the resident outcome measures used. Design Scoping review. Methods We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. Results From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using...
ObjectivesThis study aimed to determine the characteristics of ethical review and recruitment pro... more ObjectivesThis 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.DesignA 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.SettingStudies conducted and approved in England and Wales.SampleStudies focused on adults with the following capacity-affecting conditions: acquired brain injury; aphasia after stroke; autism; dement...
IntroductionThe increasingly ageing population is associated with greater numbers of people livin... more IntroductionThe increasingly ageing population is associated with greater numbers of people living with dementia (PLwD) and mild cognitive impairment (MCI). There are an estimated 55 million PLwD and approximately 6% of people over 60 years of age are living with MCI, with the figure rising to 25% for those aged between 80 and 84 years. Sleep disturbances are common for this population, but there is currently no standardised approach within UK primary care to manage this. Coined as a ‘wicked design problem’, sleep disturbances in this population are complex, with interventions supporting best management in context.Methods and analysisThe aim of this realist review is to deepen our understanding of what is considered ‘sleep disturbance’ in PLwD or MCI within primary care. Specifically, we endeavour to better understand how sleep disturbance is assessed, diagnosed and managed. To co-produce this protocol and review, we have recruited a stakeholder group comprising individuals with liv...
Objectives In the context of a growing number of dementia friendly communities (DFCs) globally, a... more 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. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. Results The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Chang...
Background and objectives Caregivers may encounter, or inadvertently cause, refusals of care by a... more 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. Research design and methods One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings Core to the caregiver experience of refusals of care was knowing the person. This underpinned five key themes identified as caregivers’ strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplify...
Background Care homes are complex settings to undertake intervention research. Barriers to resear... more 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. Methods We conducted a systematic review using a framework synthesis approach viewed through a complex adaptive systems lens. We searched: MEDLINE, Embase, CINAHL, ASSIA databases and grey literature. We sought process evaluations of care home complex interventions published in English. Narrative data were indexed under 28 context domains. We performed an inductive thematic analysis across the context domains. Results We included 33 process evaluations conducted in high-income countries, published between 2005 and 2019. Framework synthes...
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Papers by Anne Killett