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I'm still the same person: the impact of early-stage dementia on identity
- Authors:
- CADDELL Lisa S., CLARE Linda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(3), August 2011, pp.379-398.
- Publisher:
- Sage
Using a sample of 5 women and 5 men aged between 65 and 88 years who were participating in a wider study on identity in dementia, this qualitative research examined participants' perceptions of the impact of dementia on their identity. It focused on whether people with early-stage dementia felt they had changed as a person, what kind of person they thought they were, and how they thought their identity might be affected by dementia in the future. The article reports on findings from the interviews with participants, which were analysed using interpretive phenomenological analysis. Four main themes emerged from the data: I'm still the same person versus I'm different to what I used to be, I'll always stay the same versus I'm not sure what to expect, life is much the same versus it is affecting my life, and always that connection versus it's not just me (relationships with friends and family). The analysis suggested that for the most part participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. The authors discuss the findings and their implications.
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.
AWARE: exploring awareness in early stage dementia
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Journal of Dementia Care, 12(2), March 2004, p.35.
- Publisher:
- Hawker
The authors explore the concept of 'awareness' in dementia. Also outlines the AWARE project, funded by the European Commission, which aims to share ideas about awareness in dementia and develop a plan for future research that includes the perspectives of people who are living with dementia.
What predicts whether caregivers of people with dementia find meaning in their role?
- Authors:
- QUINN Catherine, CLARE Linda, WOODS Robert T.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 27(11), November 2012, pp.1195-1202.
- Publisher:
- Wiley
Even though informal caregiving for dementia sufferers is a stressful endeavour, recent research has focused on the positive aspects of providing care. However, there has been little exploration of the factors linked to caregivers identifying positive aspects of providing care. This study examined the predictors of finding meaning in caregiving. Questionnaire respondents included 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The questionnaire contained measures of meaning, relationship quality, caregivers' motivations to provide care, role captivity and caregiving competence. Findings indicated that higher meaning was associated with being a spousal caregiver, providing greater hours of care, higher religiosity, a better pre-caregiving and current relationship quality, higher competence, lower role captivity, higher intrinsic motivations and higher extrinsic motivations. Analyses indicated that variance in finding meaning was significantly predicted by high religiosity, high competence, high intrinsic motivations and low role captivity. The authors concluded that interventions should help caregivers focus on positive aspects of providing care to enhance their feelings of competence and well-being.
Attachment representations in people with dementia and their carers: implications for well-being within the dyad
- Authors:
- NELIS Sharon M., CLARE Linda, WHITAKER Christopher J.
- Journal article citation:
- Aging and Mental Health, 16(7), September 2012, pp.845-854.
- Publisher:
- Taylor and Francis
Developing dementia may activate attachment feelings and behaviours in people with dementia (PwD) and their carers. This study aimed to provide information on the nature and concordance of attachment patterns within the dyad and to examine the relative contribution of attachment representations in PwD and carers to the well-being of both parties. Ninety-seven PwD and their carers from a North Wales memory clinic completed categorical and dimensional ratings of attachment. PwD also rated their self-concept, mood and quality of life. Carers rated the functional ability of PwD and neuropsychiatric symptoms and measures of subjective well-being. PwD reported more insecure than secure attachment. Attachment security for PwD was related to more positive self-concept and less symptoms of anxiety. Mood and self-concept were strong predictors of quality of life. Carer attachment security was related to their psychological health. PwD working models of attachment did not predict carer well-being and vice versa. The authors concluded that attachment representations may be important for the psychological well-being of PwD and carers, but there was no evidence of the reciprocal nature of attachment.
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)
The experience of living with dementia in residential care: an interpretative phenomenolgical analysis
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Gerontologist, 48(6), December 2008, pp.711-720.
- Publisher:
- Oxford University Press
The subjective psychological experience of people with moderate to severe dementia living in residential care is insufficiently understood. This study aimed to explore the subjective experience of life with dementia in residential care from the perspective of the person with dementia, and to understand the psychological impact of being in this situation. This was an exploratory qualitative study. Eighty individuals with dementia who were living in residential care homes in England and Wales engaged in unstructured conversations with a researcher. The transcripts of the resultant 304 conversations were subjected to interpretative phenomenological analysis in order to develop a thematic account. The experience of living with dementia in residential care was fundamentally one of experiencing difficult and distressing emotions relating to loss, isolation, uncertainty, fear, and a sense of worthlessness. Participants generally tried to cope by accepting and making the best of things and affirming their past sense of self and identity, but some also expressed frustration and anger. Implications: Participants were able to describe aspects of their situation and their emotional response to it, grounded in a strong retained sense of self and identity. The participants' experience emphasizes the importance of improving the living situation of elders with dementia in residential care settings.
Memory rehabilitation in early dementia
- Author:
- CLARE Linda
- Journal article citation:
- Journal of Dementia Care, 7(6), November 1999, pp.33-38.
- Publisher:
- Hawker
Reviews research on interventions designed to help with memory functioning in early dementia, outlining the conceptual basis and theoretical rationale for such interventions, and giving an overview of therapeutic approaches and evidence for their effectiveness. The author stresses that any approach must be applied in a way that takes account of the whole person and their emotional well-being.
Depression and anxiety in memory clinic attenders and their carers: implications for evaluating the effectiveness of cognitive rehabilitation interventions
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 17(10), October 2002, pp.962-967.
- Publisher:
- Wiley
The potential of cognitive rehabilitation (CR) for people who have a diagnosis of Alzheimer's disease (AD) is increasingly being recognised. It has been suggested, however, that interventions targeting memory functioning in AD have negative effects on the well-being of participants and carers in terms of mood and perceived strain. While some memory training studies do report an increase in self-report scores on scales assessing these variables, it is not clear whether the changes are attributable to the intervention. There is some overlap between CR and memory training, but CR is a much more individualised approach, and therefore CR intervention studies often adopt within-subjects or single case experimental designs, for which relevant comparison data are required.