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  1. Article ; Online: Initiating activities of daily living contributes to well-being in people with dementia and their carers.

    Giebel, Clarissa M / Sutcliffe, Caroline

    International journal of geriatric psychiatry

    2017  Volume 33, Issue 1, Page(s) e94–e102

    Abstract: Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning ... ...

    Abstract Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD.
    Methods: Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis.
    Results: Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden.
    Conclusions: Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd.
    MeSH term(s) Activities of Daily Living ; Adaptation, Psychological ; Adult ; Aged ; Aged, 80 and over ; Caregivers/psychology ; Cost of Illness ; Dementia/complications ; Dementia/psychology ; Female ; Humans ; Male ; Middle Aged ; Quality of Life
    Language English
    Publishing date 2017-05-03
    Publishing country England
    Document type Journal Article
    ZDB-ID 806736-3
    ISSN 1099-1166 ; 0885-6230
    ISSN (online) 1099-1166
    ISSN 0885-6230
    DOI 10.1002/gps.4728
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Predictors of finance management in dementia: managing bills and taxes matters.

    Giebel, Clarissa M / Flanagan, Emma / Sutcliffe, Caroline

    International psychogeriatrics

    2018  Volume 31, Issue 2, Page(s) 277–286

    Abstract: ABSTRACTObjectives:Finance management skills deteriorate early on in dementia, and can influence the ability to maintain control over personal affairs. The aim of this study was to assess the contributions of different types of cognition and motor ... ...

    Abstract ABSTRACTObjectives:Finance management skills deteriorate early on in dementia, and can influence the ability to maintain control over personal affairs. The aim of this study was to assess the contributions of different types of cognition and motor functioning to finance management.
    Design: Cross-sectional analysis using secondary data.
    Setting: Community living.
    Participants: Baseline data from the Uniform Data Set from the National Alzheimer's Coordinating Centers were obtained and extracted up until December 2016.
    Measurements: Measures on everyday functioning (Functional Assessment Questionnaire) and cognition (memory, executive functioning, and language), the Clinical Dementia Rating scale, and questions on Parkinsonian motor symptoms (gait disturbance, falls, tremors, and slowness) were included. Data were analyzed using bivariate correlation and linear regression analyses.
    Results: A total of 9,383 participants were included in the analysis (Alzheimers disease (AD) = 8,201; behavioral variant fronto-temporal dementia (bvFTD) = 796; Dementia with Lewy Bodies (DLB) = 386). Cognition and motor functioning varied significantly across AD, bvFTD, and DLB, with poorer motor functioning and poorer finance management skills in DLB than in AD and bvFTD. In the regression models, slowness, verbal fluency, executive functioning, and language, followed by age, gender, and diagnosis accounted for 13.8% of the variation in managing bills, and for 11.4% of the variation in managing taxes.
    Conclusion: Maintaining finance management abilities for as long as possible is important for people with dementia, to avoid potential financial exploitation. Findings from this study highlight avenues to pursue to delay deterioration in managing bills and taxes, and help maintain financial control.
    MeSH term(s) Aged ; Aged, 80 and over ; Alzheimer Disease/physiopathology ; Alzheimer Disease/psychology ; Analysis of Variance ; Banking, Personal ; Cross-Sectional Studies ; Female ; Frontotemporal Dementia/physiopathology ; Frontotemporal Dementia/psychology ; Humans ; Lewy Body Disease/physiopathology ; Lewy Body Disease/psychology ; Linear Models ; Male ; Mental Processes ; Middle Aged ; Neuropsychological Tests ; Predictive Value of Tests ; Visual Perception
    Language English
    Publishing date 2018-08-13
    Publishing country England
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 1038825-4
    ISSN 1741-203X ; 1041-6102
    ISSN (online) 1741-203X
    ISSN 1041-6102
    DOI 10.1017/S1041610218000820
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: 'Do I have the capacity to make capacity judgements?' Researcher reflections from a person-centred dementia support study.

    Griffiths, Sarah / Gude, Alex / Greene, Leanne / Weston, Lauren / Sutcliffe, Caroline L / Wheat, Hannah / Oh, Tomasina M / Byng, Richard

    Dementia (London, England)

    2022  Volume 21, Issue 3, Page(s) 972–994

    Abstract: Background and purpose: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, ... ...

    Abstract Background and purpose: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. Whilst ethical guidelines and principles provide overarching guidance, there is a lack of detailed guidance and evidence-based training, incorporating practical 'on the ground' strategies and advice on communication practices. Experiences and reflections on research procedures used to gauge and address capacity are under reported, resulting in a lack of shared knowledge within the field.
    Design: To help address this, we engaged in researcher (co)meta-reflection on the informed capacity judgement procedure for initial consent, within our current, person-centred dementia intervention feasibility study. Our objective was to identify areas to improve our approach, but to also put forward suggestions for wider change within ethical research practice.
    Results: Findings reveal challenges and facilitators relating to six areas: 'Conducting time sensitive research whilst remaining person-centred and building relationships'; 'Information sharing and supporting communication'; 'Applying the process flexibly'; 'The role of the carer and the consultee process'; 'Judging assent and dissent' and 'Researcher related factors'. We questioned our 'capacity to make capacity judgements' in terms of both our skills and research time constraints.
    Conclusions: Based on our experiences, we argue for greater open discussion between researchers, Patient and Public Involvement contributors and Research Ethics Committees at initial project planning stages. We recommend training and guidance focuses on building researcher skills in applying a standard process flexibly, emphasising naturalistic, conversational approaches to capacity judgement. A crucial consideration for funders is how this time-intensive and sensitive work should be factored into bid application templates and funding grants. Learnings from this article have potential to inform evidence-based guidance and training for researchers, consultees, funders, reviewers and ethics committees.
    MeSH term(s) Adult ; Communication ; Dementia ; Humans ; Information Dissemination
    Language English
    Publishing date 2022-02-11
    Publishing country England
    Document type Journal Article
    ZDB-ID 2084045-7
    ISSN 1741-2684 ; 1471-3012
    ISSN (online) 1741-2684
    ISSN 1471-3012
    DOI 10.1177/14713012211067320
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Exploring the abilities of performing complex daily activities in dementia: the effects of supervision on remaining independent.

    Giebel, Clarissa / Zwakhalen, Sandra / Louise Sutcliffe, Caroline / Verbeek, Hilde

    Aging & mental health

    2019  Volume 24, Issue 8, Page(s) 1288–1294

    Abstract: Objectives: ...

    Abstract Objectives:
    MeSH term(s) Activities of Daily Living ; Caregivers ; Dementia ; England ; Humans ; Quality of Life
    Language English
    Publishing date 2019-04-16
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1474804-6
    ISSN 1364-6915 ; 1360-7863
    ISSN (online) 1364-6915
    ISSN 1360-7863
    DOI 10.1080/13607863.2019.1603283
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article: Hierarchical Decline of the Initiative and Performance of Complex Activities of Daily Living in Dementia.

    Giebel, Clarissa M / Sutcliffe, Caroline / Challis, David

    Journal of geriatric psychiatry and neurology

    2017  Volume 30, Issue 2, Page(s) 96–103

    Abstract: Objectives: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance ... ...

    Abstract Objectives: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance deficits in IADLs in dementia.
    Methods: A total of 581 carers completed the revised Interview for Deterioration in Daily Living Activities in Dementia 2 to rate their relative's everyday functioning.
    Results: Initiating and performing IADLs deteriorated hierarchically, while people with dementia were consistently most impaired in initiating using the computer and managing finances. Initiating preparing a cold or hot meal and managing finances were more impaired than their performance, whereas performing maintaining an active social life for example were more impaired than their initiative.
    Conclusion: Findings can help identify the severity of dementia by understanding deficits in initiative and performance. This study has implications for the development of targeted interventions depending on the stage of dementia.
    MeSH term(s) Activities of Daily Living/psychology ; Aged ; Aged, 80 and over ; Caregivers/psychology ; Cognition/physiology ; Cognitive Dysfunction/complications ; Dementia/epidemiology ; Dementia/psychology ; Disease Progression ; Female ; Humans ; Male ; Motor Skills ; Quality of Life/psychology ; Severity of Illness Index ; Surveys and Questionnaires ; Task Performance and Analysis
    Language English
    Publishing date 2017-01-11
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1035760-9
    ISSN 0891-9887
    ISSN 0891-9887
    DOI 10.1177/0891988716686835
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic.

    Giebel, Clarissa / Sutcliffe, Caroline / Darlington-Pollock, Frances / Green, Mark A / Akpan, Asan / Dickinson, Julie / Watson, James / Gabbay, Mark

    International journal of environmental research and public health

    2021  Volume 18, Issue 2

    Abstract: Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and ... ...

    Abstract Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times.
    Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition.
    Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic.
    Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.
    MeSH term(s) COVID-19 ; Caregivers ; Dementia/epidemiology ; England/epidemiology ; Health Services Accessibility ; Health Status Disparities ; Healthcare Disparities ; Humans ; Pandemics
    Language English
    Publishing date 2021-01-14
    Publishing country Switzerland
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 1660-4601
    ISSN (online) 1660-4601
    DOI 10.3390/ijerph18020686
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Care co-ordination for older people in the third sector: scoping the evidence.

    Abendstern, Michele / Hughes, Jane / Jasper, Rowan / Sutcliffe, Caroline / Challis, David

    Health & social care in the community

    2017  Volume 26, Issue 3, Page(s) 314–329

    Abstract: The third sector has played a significant role internationally in the delivery of adult social care services for many years. Its contribution to care co-ordination activities for older people, however, in England and elsewhere, is relatively unknown. A ... ...

    Abstract The third sector has played a significant role internationally in the delivery of adult social care services for many years. Its contribution to care co-ordination activities for older people, however, in England and elsewhere, is relatively unknown. A scoping review was therefore conducted to ascertain the character of the literature, the nature and extent of third sector care co-ordination activity, and to identify evidence gaps. It was undertaken between autumn 2013 and summer 2014 and updated with additional searches in 2016. Electronic and manual searches of international literature using distinct terms for different approaches to care co-ordination were undertaken. From a total of 835 papers, 26 met inclusion criteria. Data were organised in relation to care co-ordination approaches, types of third sector organisation and care recipients. Papers were predominantly from the UK and published this century. Key findings included that: a minority of literature focused specifically on older people and that those doing so described only one care co-ordination approach; third sector services tended to be associated with independence and person-centred practice; and working with the statutory sector, a prerequisite of care co-ordination, was challenging and required a range of features to be in place to support effective partnerships. Strengths and weaknesses of care co-ordination practice in the third sector according to key stakeholder groups were also highlighted. Areas for future research included the need for: a specific focus on older people's experiences; an investigation of workforce issues; detailed examination of third sector practices, outcomes and costs; interactions with the statutory sector; and an examination of quality assurance systems and their appropriateness to third sector practice. The main implication of the findings is a need to nurture variety within the third sector in order to provide older people and other adults with the range of service options desired.
    MeSH term(s) Aged ; Aged, 80 and over ; England ; Humans ; Organizations, Nonprofit/organization & administration ; Professional Role ; Social Work/organization & administration ; Volunteers
    Language English
    Publishing date 2017-01-24
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 1155902-0
    ISSN 1365-2524 ; 0966-0410
    ISSN (online) 1365-2524
    ISSN 0966-0410
    DOI 10.1111/hsc.12420
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Letter on "Protection by exclusion? The (lack of) inclusion of adults who lack capacity to consent to research in clinical trials in the UK".

    Griffiths, Sarah / Manger, Lorna / Chapman, Rebecca / Weston, Lauren / Sherriff, Ian / Quinn, Cath / Clarkson, Paul / Sutcliffe, Caroline / Davies, Karen / Byng, Richard

    Trials

    2020  Volume 21, Issue 1, Page(s) 104

    MeSH term(s) Adult ; Biomedical Research/ethics ; Biomedical Research/organization & administration ; Dementia/psychology ; Dementia/therapy ; Ethics, Research ; Humans ; Informed Consent ; Mental Competency ; Patient Selection/ethics ; Research Subjects/psychology ; United Kingdom
    Language English
    Publishing date 2020-01-21
    Publishing country England
    Document type Letter
    ZDB-ID 2040523-6
    ISSN 1745-6215 ; 1468-6694 ; 1468-6708
    ISSN (online) 1745-6215 ; 1468-6694
    ISSN 1468-6708
    DOI 10.1186/s13063-020-4054-4
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Experience of burden in carers of people with dementia on the margins of long-term care.

    Sutcliffe, Caroline L / Giebel, Clarissa M / Jolley, David / Challis, David J

    International journal of geriatric psychiatry

    2016  Volume 31, Issue 2, Page(s) 101–108

    Abstract: Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.: Design: National data ... ...

    Abstract Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.
    Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.
    Methods: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support.
    Results: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult-child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden.
    Conclusion: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support.
    MeSH term(s) Activities of Daily Living ; Adaptation, Psychological ; Adult ; Aged ; Aged, 80 and over ; Caregivers/psychology ; Dementia/nursing ; Dementia/psychology ; England ; Female ; Humans ; Logistic Models ; Long-Term Care/psychology ; Male ; Middle Aged ; Risk Factors ; Stress, Psychological/etiology ; Stress, Psychological/psychology
    Language English
    Publishing date 2016-02
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 806736-3
    ISSN 1099-1166 ; 0885-6230
    ISSN (online) 1099-1166
    ISSN 0885-6230
    DOI 10.1002/gps.4295
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Activities of daily living and quality of life across different stages of dementia: a UK study.

    Giebel, Clarissa M / Sutcliffe, Caroline / Challis, David

    Aging & mental health

    2014  Volume 19, Issue 1, Page(s) 63–71

    Abstract: Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage ... ...

    Abstract Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study.
    Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL.
    Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. RESULTS of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia.
    Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages.
    MeSH term(s) Activities of Daily Living ; Aged ; Aged, 80 and over ; Caregivers/psychology ; Comorbidity ; Cross-Sectional Studies ; Dementia/epidemiology ; Dementia/psychology ; Dependency, Psychological ; Depression/epidemiology ; Depression/psychology ; Europe/epidemiology ; Female ; Humans ; Male ; Neuropsychological Tests ; Psychiatric Status Rating Scales ; Quality of Life ; Severity of Illness Index ; Socioeconomic Factors ; Surveys and Questionnaires
    Language English
    Publishing date 2014-05-15
    Publishing country England
    Document type Evaluation Study ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1474804-6
    ISSN 1364-6915 ; 1360-7863
    ISSN (online) 1364-6915
    ISSN 1360-7863
    DOI 10.1080/13607863.2014.915920
    Database MEDical Literature Analysis and Retrieval System OnLINE

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