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Clare, Linda

Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

Background and Objectives: A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application.

Mon, 01/27/2020 - 10:52

Caregivers' beliefs about dementia: findings from the IDEAL study

Objective: 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.

Mon, 01/13/2020 - 15:49

The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study

Objectives: 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.

Tue, 12/17/2019 - 14:19

Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study

Objectives: 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.

Tue, 12/17/2019 - 14:14

Self-esteem, self-efficacy, and optimism as psychological resources among caregivers of people with dementia: findings from the IDEAL study

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.

Tue, 12/17/2019 - 12:21

Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study

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.

Tue, 10/22/2019 - 14:03

Care Burden and Mental Ill Health in Spouses of People With Parkinson Disease Dementia and Lewy Body Dementia

Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors.

Wed, 09/25/2019 - 17:37

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life.

Wed, 06/26/2019 - 14:27

Dualities of dementia illness narratives and their role in a narrative economy

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition.

Fri, 02/01/2019 - 12:20

A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia

Background and Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers' fulfilment of needs.

Mon, 11/19/2018 - 16:09

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