Publications by authors named "Sharon Nelis"

The aim of the study was to investigate responses to dementia-relevant words in healthy older people and to investigate changes in response over 20-months in people with early-stage dementia. An emotional Stroop task, using colour-naming dementia-relevant words, was used as an indicator of implicit awareness of dementia. Overall, 24 people with dementia and 24 healthy older people completed an emotional Stroop task (T1).

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  • The study aims to understand how caregivers' ability to "live well" changes over time and what factors influence these changes, with the goal of improving caregiver support.
  • Researchers analyzed data from spouse caregivers of individuals with mild-to-moderate dementia over three time points, focusing on their quality of life, well-being, and satisfaction.
  • Results indicated a slight decrease in the "living well" scores among caregivers, identifying three distinct groups based on their initial scores and changes, highlighting the need for targeted support for caregivers showing signs of decline.
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  • - The study investigates how well people with dementia (PwD) understand their own ability to perform daily activities, using discrepancy scores between self-reports and informant ratings.
  • - Data from 1,227 PwD and their informants showed that smaller discrepancies indicate greater self-awareness, correlating with factors like depression, neuroticism, and the amount of care provided.
  • - The findings suggest that identifying PwD with smaller discrepancy scores can help target them for interventions aimed at enhancing their independence.
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  • - The study investigated how self-rated quality of life (QoL) changes over time in people with mild-to-moderate dementia, using a large cohort followed for two years.
  • - Researchers identified four distinct QoL trajectories: two stable groups (one high QoL and one lower QoL), a declining group, and an improving group, with significant differences in psychological factors among these classes.
  • - The findings suggest that personalized care should focus on mental well-being and address issues like functional impairment and social isolation, especially for those with poorer QoL.
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  • The study investigates the costs of care for people with dementia in Britain, focusing on both paid and unpaid care over time, especially for those with rarer types of dementia.
  • Researchers analyzed data from 1,537 community-dwelling dementia patients across three waves (2014-2018) to understand how sociodemographic and clinical factors influence service costs.
  • Findings revealed that certain dementia types, particularly Lewy body and Parkinson's disease dementias, incur higher initial and increasing care costs, highlighting the need for tailored resources for these less common forms of dementia.
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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 individuals with a diagnosis of dementia and their respective carers completed the Social Emotional Questionnaire (assessing emotion recognition, empathy, social relationships and social behaviour) alongside measures of dementia severity, cognition, mood, stress, and relationship quality.

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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-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer's Disease (QoL-AD) scale.

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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 1,541 people with mild-to-moderate dementia and 1,277 caregivers participating in the IDEAL cohort at the first wave of assessment.

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The purpose of this randomized controlled trial was to determine if behavior change through individual goal setting (GS) could promote healthy aging, including health and fitness benefits in older adults who attended a community "AgeWell" Center for 12 months. Seventy-five older adults were randomly allocated to either a control or a GS group. Health outcomes were measured at baseline and after 12 months of the participants' having access to the exception of Agewell Center facilities.

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Objectives: To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness.

Methods: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness.

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Article Synopsis
  • - The study sought to understand how common loneliness is among people with mild-to-moderate dementia and what factors contribute to it.
  • - Results showed that around 30.1% of these individuals felt moderately lonely, and 5.2% felt severely lonely, primarily influenced by social isolation and depression.
  • - The research suggests that living alone and having poor quality of life increases loneliness, but factors like marital status and cognitive function did not significantly affect loneliness levels.
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Background: a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain.

Methods: this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study.

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Introduction: We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain.

Methods: We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups.

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Objectives: Being a family caregiver, and in particular giving care to someone with dementia, impacts mental and physical health and potentially reduces the ability of caregivers to "live well." This paper examines whether three key psychological resources-self-efficacy, optimism, and self-esteem-are associated with better outcomes for caregivers of people with dementia.

Design And Participants: Caregivers of 1,283 people with mild-to-moderate dementia in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of self-efficacy, optimism, and self-esteem, and "living well" (quality of life, life satisfaction, and well-being).

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: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers.: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads.

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The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life.

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Objectives: The objectives of the study are to investigate how different levels of functional ability relate to quality of life, well-being, and satisfaction with life, conceptualised as reflecting capability to "live well" in people with dementia.

Methods/design: Participants were 1496 people with mild-to-moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self-rated and informant-rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well.

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Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

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Objective: The aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL).

Methods: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL.

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Increasingly, research has explored how psychological resources enable adaptation to illness. However, it is unclear whether psychological resources protect against the potential negative effects on living well with a progressive and life-limiting condition such as dementia. This paper examines the association between psychological resources and the ability to 'live well' with dementia.

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Introduction: We aimed to better understand what predicts the capability to "live well" with dementia by identifying the relative contribution of life domains associated with the subjective experience of living well.

Methods: We analyzed data from 1547 individuals with mild-to-moderate dementia in the IDEAL cohort. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being.

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Introduction: Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues.

Methods: We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study.

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Background: The aim was to investigate the co-morbidity profile of people with dementia and examine the associations between severity of co-morbidity, health-related quality of life (HRQoL) and quality of life (QoL).

Methods: The improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort consisted of 1,547 people diagnosed with dementia who provided information on the number and type of co-morbid conditions. Participants also provided ratings of their health-related and dementia-specific QoL.

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Background: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs.

Methods: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain.

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