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‘All the world’s a stage’: accounting for the dementia experience – insights from the IDEAL programme

Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an…

Aging & Mental Health journal cover
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…

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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…

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A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia

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…

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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…

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“I Don’t Think of It As An Illness”: Illness Representations in Mild to Moderate Dementia

The self-regulatory model proposes that illness representations influence adjustment and coping in chronic conditions. Better understanding of the illness representations held by people with dementia could help with targeting information and support so as to optimize adjustment and coping. In this mixed-methods study of illness representations among people with mild to moderate Alzheimer’s, vascular, or mixed…

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Illness Representations in Caregivers of People with Dementia

Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of…