Search results for ‘Subject term:"alzheimers disease"’ Sort:
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Studying the self in people with dementia: How might we proceed?
- Authors:
- CADDELL Lisa M., CLARE Linda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 12(2), 2013, pp.192-209.
- Publisher:
- Sage
The impact of dementia on the self has become the subject of much research over the last few years, mainly due to the implications for support and care for people with dementia. However, there are a number of limitations of this research that make it difficult to integrate the existing evidence and to draw any firm conclusions regarding the persistence of self. This highlights the need for a different approach to studying the self in people with dementia in order to obtain more robust evidence from future studies. This paper attempts to integrate current research using an existing systematic and comprehensive framework of the self, and outlines the advantages and limitations of using such a framework as the basis for future studies. (Publisher abstract)
Striving for connection: appraisal and coping among women with early-stage Alzheimer's disease
- Authors:
- VAN DIJKHUIZEN Mike, CLARE Linda, PEARCE Alison
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 5(1), February 2006, pp.73-94.
- Publisher:
- Sage
A number of models have been proposed to describe the processes of appraisal and coping in early-stage dementia, but possible gender differences remain to be explored. The present study focused specifically on women with early-stage Alzheimer's disease, and examined how they made sense of, and attempted to cope with, their situation. Transcripts of interviews with nine women were analysed using Interpretative Phenomenological Analysis. Ten key themes were identified, which were grouped into three higher-order themes: connectedness, protective strategies and adjustment. The women experienced memory problems as a threat to the sense of connectedness they derived from attachment to family and friends, affiliation with social roles and familiarity with their surroundings. A Level of Connectedness Model of the appraisal and coping processes of women with early-stage Alzheimer's disease is presented, which places coping in an interpersonal framework, whereby a woman's ability to maintain a sense of self is inherently dependent on the readiness of others to facilitate connectedness. This provides a focus for possible further development of psychosocial interventions that consider well-being in an interpersonal context.
Perceptions of change over time in early-stage Alzheimer's disease: implications for understanding awareness and coping style
- Authors:
- CLARE Linda, ROTH Ilona, PRATT Rebekah
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(4), November 2005, pp.487-520.
- Publisher:
- Sage
Emerging models of subjective experience, awareness and coping in early-stage dementia may usefully be enhanced by incorporating a temporal perspective. As an initial step in this direction, we undertook a prospective one-year follow-up of participants with a diagnosis of early-stage Alzheimer's disease whose accounts had contributed to the development of Clare's phenomenological model of awareness incorporating the continuum model of coping in early-stage dementia. All 12 participants from the original study completed a follow-up interview one year later. Interpretative phenomenological analysis was used to identify emergent themes. All participants continued to demonstrate some awareness of difficulties with memory, but individuals varied in their evaluations of the extent and implications of these changes, with the majority tending towards more normalizing explanations. Many were nevertheless making practical adjustments to their activities, and the need to renegotiate relationships was a prominent issue. Subsequently, the data were examined for evidence of the themes identified in the original study, the initial model was reapplied, and changes in individual coping style over time were explored through case study analysis. The range of processes and coping styles observed across participants 12 months earlier was still apparent, with some indication of increased polarization between self-maintaining and self-adjusting styles of coping. A small number of participants showed significant changes in coping style, with changes occurring in both directions. The findings suggest that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.
Trajectories of quality of life in early-stage dementia: individual variations and predictors of change
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 29(6), 2014, pp.616-623.
- Publisher:
- Wiley
Background: Little evidence is available about how quality of life (QoL) changes as dementia progresses. Objectives: The authors explored QoL trajectories over a 20-month period and examined what predicted change in QoL. Method: Fifty-one individuals with a diagnosis of Alzheimer's, vascular or mixed dementia (people with dementia (PwD)) participating in the Memory Impairment and Dementia Awareness Study rated their QoL using the QoL-Alzheimer's Disease Scale at baseline and at 20-month follow-up. PwD also rated their mood and quality of relationship with the carer. In each case, the carer rated his or her level of stress and perceived quality of relationship with the PwD. Results: There was no change in mean QoL score. Nearly one-third of PwD rated QoL more positively at 20-month follow-up and nearly one-third rated QoL more negatively. These changes could be regarded as reliable in one-quarter of the sample. Participants taking acetylcholinesterase-inhibiting medication at baseline were more likely to show a decline in QoL score. There were no other significant differences between those whose scores increased, decreased or stayed the same on any demographic or disease-related variables, or in mood or perceived quality of relationship with the carer. Whereas baseline QoL score was the strongest predictor of QoL at 20 months, the quality of relationship with the carer as perceived by the PwD was also independently a significant predictor. Conclusions: There is a degree of individual variation in QoL trajectories. Use of acetylcholinesterase-inhibiting medication appears linked to decline in QoL score, whereas positive relationships with carers play an important role in maintaining QoL in early-stage dementia (Edited publisher abstract)
Supporting everyday activities for people with early stage AD: the benefits of cognitive rehabilitation
- Author:
- CLARE Linda
- Journal article citation:
- Journal of Dementia Care, 18(5), September 2010, pp.37-38.
- Publisher:
- Hawker
People with early-stage Alzheimer’s Disease may benefit from extra support with engaging in everyday activities. This article describes a cognitive rehabilitation intervention for people with early-stage Alzheimer’s Disease. The approach is called cognitive rehabilitation because it addresses difficulties resulting from impairments in memory and other cognitive functions. Individual goals are identified in discussion with a therapist. These are areas where the person with Alzheimer’s Disease would like to manage things better, or develop new skills or ways of coping. Once the goals are selected the therapist works together with the person to devise a plan for addressing the goal. This may involve compensatory or restorative approaches. This article briefly describes a randomised controlled trial comparing this approach with relaxation therapy and with no treatment. A total of 69 participants were randomly assigned to one of the three conditions and set goals, but only those allocated to the cognitive rehabilitation group actively worked with the therapist to achieve the goals. The results showed that the participants in the cognitive rehabilitation group improved performance in relation to their goals, while the other groups did not change. The article concludes that the extra support offered by the cognitive rehabilitation approach can help people stay engaged in everyday activities and manage their memory difficulties more effectively.
Illness representations in early-stage dementia: a preliminary investigation
- Authors:
- CLARE Linda, GOATER Trish, WOODS Bob
- Journal article citation:
- International Journal of Geriatric Psychiatry, 21(8), August 2006, pp.761-767.
- Publisher:
- Wiley
The self-regulation model of adjustment to illness suggests that individual differences in coping and responding are related to the illness representations people hold. The present study explored the feasibility of applying this concept with people with early-stage dementia. Understanding of the illness was explored in semi-structured interviews with 22 people who had a diagnosis of mild to moderate Alzheimer's disease or mixed dementia, and a measure of mood was administered. Interview transcripts were subjected to content analysis. Representations covering illness identity, cause, course, cure/control and consequences were successfully elicited, but diverged from professional constructs in some important respects. Most participants regarded their difficulties as part of normal ageing, and one-third viewed their condition as stable or improving. Almost all participants described some positive coping strategies; participants who believed that nothing could be done to help were more likely to score above clinical cut-offs for depression or anxiety. The findings offer a preliminary insight into the nature of illness representations in early-stage dementia, and support the relevance of the self-regulation model as a basis for understanding and intervention
Negotiating the impact of forgetting: dimensions of resistance in task-orientated conversations between people with early stage dementia and their partners
- Authors:
- CLARE Linda, SHAKESPEARE Pam
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 3(2), June 2004, pp.211-232.
- Publisher:
- Sage
Dialectical and social constructionist approaches to dementia emphasises the importance of social interaction, and recent work has begun to call for a more relationship-based approach. Describes some of the findings from an exploratory, qualitative study investigating conversational interactions between people with early-stage dementia and their spouses. Analysis of data from ten couples draws primarily on voice-relational analytic methods to explore how these couples use talk in conversation to negotiate and co-construct an account of their situation, and to outline the dimensions of resistance in this context. The findings suggest a need to attend to interaction and conversation from the very earliest stages of dementia. The concept of resistance as evidenced in the interactions presented here, provides a framework that can assist in this endeavour.
Illness representations in caregivers of people with dementia
- Authors:
- QUINN Catherine, JONES Ian Rees, CLARE Linda
- Journal article citation:
- Aging and Mental Health, 21(5), 2017, pp.553-561.
- Publisher:
- Taylor and Francis
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 illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial. (Publisher abstract)
Managing sense of self: coping in the early stages of Alzheimer's disease
- Authors:
- PEARCE Alison, CLARE Linda, PISTRANG Nancy
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 1(2), June 2002, pp.173-192.
- Publisher:
- Sage
This study uses qualitative methodology to examine the appraisals and coping processes of 20 men diagnosed with early-stage Alzheimer's disease. Semi-structured interviews were conducted with the men and their wives. The men's accounts suggested that they attempted to manage their sense of self by balancing their wish to maintain a prior sense of self against their need to reappraise and construct a new sense of self. Ways in which services can assist men in the process of managing their sense of self are explored.
Individual goal‐oriented cognitive rehabilitation to improve everyday functioning for people with early‐stage dementia: A multicentre randomised controlled trial (the GREAT trial)
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 34(5), 2019, pp.709-721.
- Publisher:
- Wiley
Objectives: To determine whether individual goal‐oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild‐to‐moderate dementia. Design and methods: Parallel group multicentre single‐blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD‐10 diagnosis of Alzheimer, vascular or mixed dementia, and mild‐to‐moderate cognitive impairment (Mini‐Mental State Examination [MMSE] score ≥ 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months. Participants were followed up 3 and 9 months post randomisation by blinded researchers. The primary outcome was self‐reported goal attainment at 3 months. Secondary outcomes at 3 and 9 months included informant‐reported goal attainment, quality of life, mood, self‐efficacy, and cognition and study partner stress and quality of life. Results: We randomised (1:1) 475 people with dementia; 445 (CR = 281) were included in the intention to treat analysis at 3 months and 426 (CR = 208) at 9 months. At 3 months, there were statistically significant large positive effects for participant‐rated goal attainment (d = 0.97; 95% CI, 0.75‐1.19), corroborated by informant ratings (d = 1.11; 95% CI, 0.89‐1.34). These effects were maintained at 9 months for both participant (d = 0.94; 95% CI, 0.71‐1.17) and informant (d = 0.96; 95% CI, 0.73‐1.2) ratings. The observed gains related to goals directly targeted in the therapy. There were no significant differences in secondary outcomes. Conclusions: CR enables people with early‐stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy. (Edited publisher abstract)