Awareness of carer distress in people with dementia

Ablitt, Astri; Jones, Gregory V.; Muers, Jane

doi:10.1002/gps.2461

Cited by 15 publications

(7 citation statements)

References 30 publications

(33 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…People with early experience of dementia in this synthesis have demonstrated that they continue to work actively with others in their family to maintain their relationships; to make sense of the impact of dementia and to manage the changes that it brings. Consistent with previous research, the accounts of people with dementia demonstrate continued emotional awareness and awareness of the impact of dementia upon the family member involved in caring for them (Ablitt, Jones and Muers 2010; Burgener and Twigg 2002). Such insight and awareness facilitated opportunities for the relationship to continue to grow and for compromise and adjustment to take place, thus appearing to contribute to wellbeing and meaningful lives.…”

Section: Discussionsupporting

confidence: 78%

Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Fontaine

Oyebode

2013

Ageing and Society

View full text Add to dashboard Cite

show abstract

Section: Discussionsupporting

confidence: 78%

Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Fontaine

Oyebode

2013

Ageing and Society

View full text Add to dashboard Cite

show abstract

“…Caregiver distress, both in relation to specific NPI-Q symptoms and more generally on the Relatives Stress Scale, was also associated with lower QoL as rated by the person with dementia, suggesting a sensitivity on the part of the person with dementia to the emotional climate, as has been demonstrated previously [54]. The carer’s NPI-Q distress rating relating to agitation/aggression did not however contribute additionally to the final model.…”

Section: Discussionmentioning

confidence: 49%

What contributes to a good quality of life in early dementia? awareness and the QoL-AD: a cross-sectional study

Woods

Nelis

Martyr

et al. 2014

Health Qual Life Outcomes

View full text Add to dashboard Cite

BackgroundSelf-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions. Depressed mood, relationship quality and neuropsychiatric symptoms predict scores on these measures, whereas cognitive impairment and functional abilities typically do not. This study examines whether these self-reports are influenced by personality and by the person’s awareness of his/her impairments. A strong negative association between QoL and awareness of deficits would have implications for the validity of self-report in this context and for therapeutic interventions aiming to increase adjustment and coping.MethodsParticipants were 101 individuals with early‒stage dementia and their family carers participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. QoL was assessed using the QoL-AD scale, and awareness was assessed in relation to memory, activities of daily living and social functioning. Self-concept, conscientiousness, quality of relationship and mood were assessed and a brief neuropsychological battery administered. Carers rated their own stress and well-being and reported on neuropsychiatric symptoms. A series of regression analyses predicting QoL-AD were carried out, identifying key variables in each domain of assessment to take forward to an overall model.ResultsCognitive impairment was not related to QoL. The final model accounted for 57% of the variance in QoL-AD scores, with significant contributions from depressed mood, severity of irritability shown by the person with dementia, self-concept, quality of relationship (rated by the person with dementia) and male gender. The bivariate relationships of QoL-AD with awareness of memory function, awareness of functional abilities and conscientiousness were mediated by both depressed mood and self-concept.ConclusionsThis study reports the most comprehensive approach to evaluation of awareness to date. Most of the indices of awareness used are not related to self-reported QoL. Discrepancies in evaluative judgements of memory function and functional abilities between people with dementia and carers are related to QoL, but this relationship is mediated by both depressed mood and self-concept, which have a much stronger relationship with QoL. The validity of self-report measures of QoL in people with early stage dementia is supported by these results.

show abstract

“…Scores of 11 or more on either subscale are considered to be a significant ‘case’ of psychological morbidity, with scores of 8–10 classified as ‘borderline’ and 0–7 ‘normal’. The HADS has been employed and validated in studies of people with dementia and carers [65,66]. …”

Section: Methodsmentioning

confidence: 99%

Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT)

Clare

Bayer

Burns

et al. 2013

Trials

View full text Add to dashboard Cite

BackgroundPreliminary evidence suggests that goal-oriented cognitive rehabilitation (CR) may be a clinically effective intervention for people with early-stage Alzheimer’s disease, vascular or mixed dementia and their carers. This study aims to establish whether CR is a clinically effective and cost-effective intervention for people with early-stage dementia and their carers.Methods/designIn this multi-centre, single-blind randomised controlled trial, 480 people with early-stage dementia, each with a carer, will be randomised to receive either treatment as usual or cognitive rehabilitation (10 therapy sessions over 3 months, followed by 4 maintenance sessions over 6 months). We will compare the effectiveness of cognitive rehabilitation with that of treatment as usual with regard to improving self-reported and carer-rated goal performance in areas identified as causing concern by people with early-stage dementia; improving quality of life, self-efficacy, mood and cognition of people with early-stage dementia; and reducing stress levels and ameliorating quality of life for carers of participants with early-stage dementia. The incremental cost-effectiveness of goal-oriented cognitive rehabilitation compared to treatment as usual will also be examined.DiscussionIf the study confirms the benefits and cost-effectiveness of cognitive rehabilitation, it will be important to examine how the goal-oriented cognitive rehabilitation approach can most effectively be integrated into routine health-care provision. Our aim is to provide training and develop materials to support the implementation of this approach following trial completion.Trial registrationCurrent Controlled Trials ISRCTN21027481

show abstract

Awareness of carer distress in people with dementia

Abstract: The clinical implications of awareness of carer distress in people with dementia should be considered.

Cited by 15 publications

References 30 publications

Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Family relationships and dementia: a synthesis of qualitative research including the person with dementia

What contributes to a good quality of life in early dementia? awareness and the QoL-AD: a cross-sectional study

Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT)

Contact Info

Product

Resources

About