Linda Clare

Linda Clare
University of Exeter | UoE · Medical School

About

490
Publications
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18,903
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Publications

Publications (490)
Article
Full-text available
Approximately two-thirds of hospital admissions are older adults and almost half of these are likely to have some form of dementia. People with dementia are not only at an increased risk of adverse outcomes once admitted, but the unfamiliar environment and routinised practices of the wards and acute care can be particularly challenging for them, he...
Conference Paper
Background There is no cure for dementia, so finding elements of care that make a difference to patients remains a priority. Treatment of patients with dementia is often complicated by additional medical conditions and they have double the risk of being prescribed inappropriate medication. Higher continuity of general practitioner care (CGPC), that...
Article
Full-text available
Background It is unclear whether people with dementia (PwD) have more negative attitudes toward own aging (ATOA) than people without dementia and what factors influence ATOA among PwD. We investigated whether PwD have more negative ATOA than individuals without dementia and whether cognition and dementia subtype are associated with ATOA in PwD. Me...
Article
Objective: We explored (1) social, cultural, and economic capital in spousal carers of people with dementia; (2) profiles of carers with different levels of capital; (3) whether the identified profiles differ in levels of stress and positive experiences of caring, and likelihood of depression over time. Methods: Baseline (2014-2016), 12-month, a...
Article
Background and objectives Understanding whether and how caregivers’ capability to ‘live well’ changes over time, and the factors associated with change, could help target effective caregiver support. Research design and methods We analyzed three timepoints (12 months apart) of IDEAL cohort data from co-resident spouse caregivers of community-dwell...
Article
Full-text available
There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia....
Article
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This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID‐19 vaccination roll‐out. We conducted 12 semi‐structured interviews with people with dementia aged 50–88 years, living alon...
Preprint
Background Aims We 1) described levels of informant-rated involvement of people with dementia in everyday decision-making; 2) explored whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making at baseline; 3)...
Article
Background: Social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies have compared data collected both during and before the pandemic to examine the effect of these changes. Objecti...
Article
Full-text available
Background Many people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services sooner. The aim of this study was to identify demog...
Article
Full-text available
Introduction: Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). Methods: Two measures of ADL (Functional Activities Ques...
Article
Full-text available
Objectives The aim of the present study was to determine whether psychotic symptoms in people with dementia (PwD) living in nursing homes were associated with reduced quality of life and to understand the additional impact of other concurrent neuropsychiatric symptoms on QoL. Design Cross-sectional cohort study (using data from WHELD cohort). Set...
Article
Full-text available
Objective: Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Methods: Data we...
Article
Full-text available
Objective Research suggests a decline in the mental health and wellbeing of people with dementia (PwD) during the COVID-19 pandemic; however few studies have compared data collected pre-pandemic and during the pandemic. Moreover, none have compared this change with what would be expected due to dementia progression. We explored whether PwD experien...
Preprint
Some carers of people with dementia have reported increased caring demands and carer stress during the COVID-19 pandemic. Carers’ experiences during this time may also have implications for resilience. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore family carer exp...
Article
Full-text available
Objectives: Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis...
Preprint
This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community during a period of ongoing restrictions before the COVID-19 vaccination roll-out in England and Wales. We conducted semi-structured interviews with 11 people with dementia and 10 carers (including 3 d...
Preprint
The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE component of the IDEAL cohort study, the ove...
Preprint
Background Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. Objective To explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Methods Data were collected...
Article
Full-text available
Objectives Dementia can affect language processing and production, making communication more difficult. This creates challenges for including the person’s perspective in research and service evaluation. This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dement...
Article
Full-text available
Higher awareness of positive age-related changes (AARC gains) is related to better mental health, whereas higher awareness of negative age-related changes (AARC losses) is related to poorer mental and physical health. So far perceived gains and losses have been explored separately, but people report gains and losses concurrently in varying degrees,...
Article
Full-text available
Objectives We aimed to examine change over time in self-rated quality of life (QoL) in people with mild-to-moderate dementia and identify sub-groups with distinct QoL trajectories. Method We used data from people with mild-to-moderate dementia followed up at 12 and 24 months in the IDEAL cohort study (baseline n=1537). A latent growth model approa...
Article
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Background: Global initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild-to-moderate dementia receive information and psychosocial interventions to improve their ability to 'live...
Article
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Background Higher continuity of GP care (CGPC), that is, consulting the same doctor consistently, can improve doctor–patient relationships and increase quality of care; however, its effects on patients with dementia are mostly unknown. Aim To estimate the associations between CGPC and potentially inappropriate prescribing (PIP), and with the incid...
Article
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How people understand and adapt to living with dementia may influence well-being. Leventhal's Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Ac...
Article
Background: The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members' de...
Article
Full-text available
Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how...
Article
It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruit...
Preprint
Full-text available
Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dement...
Preprint
Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia...
Preprint
Full-text available
Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the well-being and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered ho...
Article
Full-text available
Objectives Older people describe positive and negative age-related changes, but we do not know much about what contributes to make them aware of these changes. We used content analysis to categorize participants’ written comments and explored the extent to which the identified categories mapped onto theoretical conceptualizations of influences on a...
Article
Full-text available
Background: Only one study has explored the associations of subjective sleep difficulties with self-perceptions of aging. It focused on a global indicator of self-perceptions of aging (subjective age) despite individuals reporting different experiences of aging in relation to different life domains. The concept of awareness of negative age-related...
Article
Full-text available
Communities play an important role in supporting people living with dementia. The aim of this study was to explore what could be changed in the local community to enable those with dementia to live well. People with dementia and carers taking part in the IDEAL programme responded to open-ended questions. Responses from 1,172 people with dementia an...
Article
Full-text available
Objectives Healthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of ‘self-organisation’ can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREA...
Article
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Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEA...
Article
Background: Increasing physical activity (PA) in those who have memory concerns requires innovative approaches. Objective: To compare in this randomized controlled trial (RCT) the effects on PA, adherence, and fitness of two approaches to deliver a 6-month home-based PA program in older, inactive individuals at risk of cognitive decline. Method...
Article
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Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community...
Article
Full-text available
Key points • The focus on living well with dementia encourages a more positive and empowering approach • The right support can improve the experience of living with dementia • An holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well-being is essential • Enabling people to live bet...
Article
Full-text available
Objective We explored which factors are associated with subjective age (SA), i.e. feeling younger, the same as, or older than one’s chronological age, and whether these factors differ between men and women and between two age sub-groups. Design Cross-sectional study using qualitative and quantitative data for 1457 individuals (mean age= 67.2 years...
Preprint
Full-text available
Higher awareness of positive age-related changes (AARC gains) is related to better mental health, whereas higher awareness of negative age-related changes (AARC losses) is related to poorer mental and physical health. So far perceived gains and losses have been explored separately, but people report gains and losses concurrently in varying degrees,...
Article
We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to ‘living well’. We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community....
Article
Research studies exploring the association of cognitive complaints with objectively assessed cognitive decline report inconsistent results. However, many of these have methodological limitations. We investigated whether 1) more severe subjective cognitive decline (SCD) and subjective memory decline (SMD) predict change in objectively assessed globa...
Article
Full-text available
Objectives Evidence linking subjective concerns about cognition with poorer objective cognitive performance is limited by reliance on unidimensional measures of self-perceptions of aging (SPA). We used the awareness of age-related change (AARC) construct to assess self-perception of both positive and negative age-related changes (AARC gains and los...
Article
Full-text available
A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person’s identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users’ perspectiv...
Article
Full-text available
Objective To determine whether auditory hallucinations in community‐dwelling people with dementia (PwD) living in the community impacted on quality of life, subjective well‐being and life satisfaction. Design Cross‐sectional cohort study. Settings and participants: 1251 community‐dwelling PwD and caregivers were included in this study. Measures...
Article
Background and objectives Changes in socio-emotional functioning in people living with dementia (PLWD) are common; however, little is known about the broader effects these may have on wellbeing. This study examined socio-emotional functioning over time and associations with the wellbeing of PLWD and their family carers. Method One hundred and one...
Article
We interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties....
Preprint
Full-text available
Background: It is unclear whether people with dementia (PwD) have more negative attitudes toward own aging (ATOA) than people without dementia and what factors influence ATOA among PwD. We investigated whether PwD have more negative ATOA than individuals without dementia and whether cognition and dementia subtype are associated with ATOA in PwD. Me...
Article
Full-text available
Objective A primary goal for dementia research is to understand how to best support people to live well with dementia. Among cognitively healthy older individuals, more positive attitudes toward their own aging (ATOA) and/or feeling younger than their chronological age (i.e. having a younger subjective age: SA) are associated with better quality of...
Article
Full-text available
Existing evidence suggests that individuals’ subjective experience of cognitive decline may be a risk state for dementia. However, whether self-awareness of positive changes confer cognitive protection is unknown. We examined the extent to which awareness of positive (AARC gains) and negative (AARC losses) age-related changes explains variability i...
Article
Full-text available
Psychological and non-pharmacological interventions that could have a positive effect on outcomes important to persons living with dementia are essential to identify given the the limited efficacy of dementia medications and the diverse needs of persons living. In 2019, for the first time the Canadian Consensus Conference on the Diagnosis and Treat...
Article
Full-text available
There is a rich literature from The United States looking at the importance of religion and spirituality in the lives of older adults where it is positively linked with wellbeing. Despite the increased interest in wellbeing in the UK comparatively little interest has been show in the role of religion and spirituality in promoting wellbeing includin...
Article
Full-text available
Higher awareness of negative age-related changes (AARC-losses) is related to poorer mental and physical health whereas higher awareness of positive age-related changes (AARC-gains) is related to better mental health. Associations of health with AARC-gains and losses have been explored separately, but often people experience gains and losses concurr...
Article
Objectives: The social connectedness of older people is of increasing concern. Technology has been suggested for enhancing social inclusion. This study aimed to explore the nature and quality of connections via technology. Methods: Qualitative exploration of experiences, stories, and needs was undertaken through semi-structured interviews with olde...
Article
People from African Caribbean and South Asian backgrounds come to the attention of memory services at a much later stage in the dementia process than the majority population in the UK, often as a result of a crisis (1,2,3). We aim to discover barriers to service use as well as factors that are important maintaining a good quality of life for people...
Article
People with dementia and their carers may be vulnerable to loneliness and isolation. We investigated: (a) prevalence of, and risk factors for, loneliness and isolation among people with dementia and their carers and (b) the interrelationship between loneliness and isolation for dyads (person with dementia and carer). The IDEAL cohort of people with...
Article
Cognitive training (CT) has been found by previous reviews to be ineffective in relation to cognitive and non‐cognitive outcomes among people with neurodegenerative or vascular dementias (Bahar‐Fuchs et al. 2013). However, the quality of trials has been regarded as low, and numerous new trials have been completed in recent years. Here we present fi...
Article
Understanding the factors associated with quality of life (QoL), satisfaction with life (SwL) and wellbeing can help us become more effective in optimizing the potential for people with mild‐to‐moderate dementia to ‘live well’ with the condition. Identifying individuals at risk of declining well‐being could help to target support more appropriately...
Article
This study aimed to: 1) Examine the impact of psychotic symptoms on the quality of life, wellbeing and satisfaction of life in people with dementia(PwD) living in the community, and 2) determine whether other symptoms known to affect quality of life in PwD would confound any effect detected. The Neuropsychiatric Inventory Questionnaire was complete...
Article
The INDIGO RCT compared the effects of a mentor‐supported individual goal‐setting approach versus peer‐contact only on adherence to a 6‐month home‐based physical activity (PA) program for inactive individuals aged 60‐80 years with mild cognitive impairment (MCI) or subjective cognitive decline (SCD). We report on the mentoring‐peer support experien...
Article
Being in hospital can be particularly confusing and challenging not only for people living with dementia, but also for their carers and the staff that care for them. We undertook three systematic reviews of quantitative and qualitative evidence according to best practice guidelines. The reviews explored: 1) experience of care in hospital; 2) experi...
Article
Full-text available
Awareness of age‐related changes (AARC), including perceived losses (e.g., memory decline) and gains (e.g., wisdom), comprise an important component of the aging process. Indeed, subjective perceptions of aging and health can reveal critical information not captured by objective measures. In particular, growing biomarker evidence suggests that subj...
Article
Full-text available
Introduction: Non-pharmacological treatments (NPTs) have the potential to improve meaningful outcomes for older people at risk of, or living with dementia, but research often lacks methodological rigor and continues to produce mixed results. Methods: In the current position paper, experts in NPT research have specified treatment targets, aims, a...
Article
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BACKGROUND/OBJECTIVES: To evaluate the efficacy of a multidomain intervention to reduce lifestyle risk factors for Alzheimer’s disease (AD) and improve cognition in individuals with subjective cognitive decline (SCD) or mild cognitive impairment (MCI). DESIGN: The study was an 8-week two-arm single-blind proof-of-concept randomized controlled trial...
Article
Full-text available
Introduction: Current pharmacological therapies for dementia have limited efficacy. Thus it is important to provide recommendations on individual and community-based psychosocial and non-pharmacological interventions for persons living with dementia (PLWDs) and their caregivers. Methods: Phase 1: A systematic review for developing recommendation...
Data
S1: Mean differences for all lifestyle and cognitive outcomes at all timepoints S2: Baseline characteristics of participants who withdrew
Article
Background Being in hospital can be particularly confusing and challenging not only for people living with dementia, but also for their carers and the staff who care for them. Improving the experience of care for people living with dementia in hospital has been recognised as a priority. Objectives To understand the experience of care in hospital f...
Article
Background: A significant proportion of people with dementia live alone, but little is known about their specific needs. Objective: To understand the profile of people living alone with mild-to-moderate dementia in the UK and identify any systematic differences associated with living situation. Methods: We analyzed cross-sectional data from 1,...
Article
Full-text available
Background: With an increasing number of people with dementia worldwide and limited advancement in medical treatments, the call for new and cost-effective approaches is crucial. The utility of self-management has been proven in certain chronic conditions. However, very little work has been undertaken regarding self-management in people with dement...