Chris Clarke

Remaining hopeful in early-stage dementia: A qualitative study

Objectives: Improving the quality of life for people living with dementia is widely accepted as an important outcome in dementia care services. Positive psychology, the systematic study of strengths, capacities, and personal resources, is one framework for understanding how a person with dementia might achieve this. This study investigated the subjective experience of hope–a construct from the discipline of positive psychology in older people with early-stage dementia. Method: Ten volunteer participants over the age of 65 years were recruited from a memory clinic in England. Semi-structured interviews were used to explore participants’ hopes, in terms of their personal meaning, their resources, and the potential barriers and facilitators of hope in dementia. Interviews were analyzed using interpretative phenomenological analysis (IPA). Results: Eight themes were extracted, subsumed under two higher-order themes: ‘live in hope or die in despair’ and ‘keep living and keep living well’. Participants described how their internalized hope-fostering beliefs that were often learned during childhood were challenged by the reality of hope-hindering experiences associated with old age and dementia. A balancing process of re-appraisal enhanced resolution and this sense of stability then allowed them to develop positive attitudes towards common age-related constraints in their health and social circumstances. Conclusion: The findings offer insight into the existence, nature, and relevance of hope in the lives of people with early-stage dementia. They provide a useful framework for developing hope-fostering strategies in early interventions that aim to assist individuals with dementia to maintain their quality of life.

A prospective study of positive adjustment to lower limb amputation

Objective: To examine prospectively the influence of demographic, amputation and psychosocial variables on positive psychological adjustment outcomes for lower limb amputees. Design: A quantitative questionnaire study with two time points: at the beginning of rehabilitation and at six-month follow-up. Multiple regression analyses were used to determine the contribution of demographic/amputation factors versus psychosocial factors to adjustment outcomes. Setting: A regional outpatient specialist mobility and rehabilitation centre in the UK. Subjects: Participants were recruited as a consecutive sample of new referrals with lower limb amputation. Main measures: Age, gender, level and cause of amputation were recorded. The following measures were used: Hope Scale, Multidimensional Scale of Perceived Social Support (MSPSS), Trinity Amputation and Prosthetic Experiences Scale (TAPES) pain subscale initially and the Positive and Negative Affect Scale (PANAS) and full TAPES at six-month follow up. The measures were administered by two specialist nurses. Results: Ninety-nine patients provided data at both time points. Hope at the beginning of rehabilitation was related to positive mood (P<0.001) and hope and social support were related to general adjustment (P<0.01, P<0.001) at follow-up. Demographic and amputation factors were not related to psychological adjustment outcomes in this study. Conclusions: The findings demonstrate prospectively the importance of psychosocial variables in the prediction of positive adjustment to lower limb amputation.

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Objective: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes. Methods: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts. Findings: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth. Conclusions: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care.

Post-stroke depression and expressed emotion

Primary objectives: This study examined the role of expressed emotion (EE) in post-stroke depression (PSD) and the extent to which partner/spouse EE interacted with lesion laterality in PSD. The relationship between (i) lesion location and levels of PSD and (ii) levels of EE and levels of PSD were investigated. The role of perceived EE in PSD was also explored. Design: Cross-sectional, between-subjects design. Methods: Measures applied to stroke survivors included Extended Activities of Daily Living Scale (EADL), Post-Stroke Depression Rating Scale (PSDRS) and Level of Expressed Emotion Scale (LEE); spouses/partners completed the LEE. Results: The interaction between lesion laterality and levels of partner/spouse EE on PSD was not statistically significant (p = 0.63, F = 0.24, df = 1,56). However, a clear relationship was found between lesion laterality and PSD (p = 0.028). As levels of spouse/partner LEE scores increased, levels of PSD also increased (p = 0.039). Perceived EE scores illustrated a significant interaction between lesion laterality and levels of EE on PSD (p = 0.005, F = 8.591, df = 1,56). Conclusion: Whilst spouse/partner EE scores showed no interaction with lesion laterality to determine levels of PSD, a significant interaction was found when compared with stroke survivor perceived EE scores. Furthermore, left hemisphere (LHS) stroke survivors reported higher levels of depression than right hemisphere (RHS) stroke survivors. As levels of EE increased, PSD also increased, with LHS being greater than RHS.

Distinguishing worry from rumination in older people: A preliminary investigation

Anxiety and depression are common mental health problems in later life. Since worry and rumination are thought to underpin the respective primary cognitive processes in anxiety and depression, we developed a measure to distinguish worry from rumination in later life. The Ruminative Response Scale was adapted to include items that characterise the cognitive features of worry. We examined its properties using 92 clinical and non-clinical participants, aged over 65. Factor analysis demonstrated a three-factor structure: brooding, reflection and worry with internal consistencies of α = 0.72, α = 0.67 and α = 0.55 respectively. We found no evidence for concurrent validity of these factors using the Penn State Worry Questionnaire. Modest but significant associations between reflection and brooding (r = 0.36) and reflection and worry (r = 0.2) were found. Brooding and worry sub-scales remained unrelated. We suggest that it is possible to distinguish worry from rumination in older people and that differentiating between their key underlying characteristics in the assessment of mood problems may enhance the targeting and evaluation of cognitive–behavioural therapy for anxiety and depression in later life. Future research with a substantial clinical sample is needed to explore the underlying dimensions and correlates of worry in later life.

Is expressed emotion related to estimates of ability made by older people with cognitive impairments and their partners

Objectives: Discrepancies in ratings of ability are used to assess awareness in people with cognitive impairments, and previously have been found to be associated with comorbid depression and carer distress. This study explored how the degree of discrepancy between self-ratings of ability made by older people with a cognitive impairment and informant ratings made by their partners relates to aspects of their relationship quality. It was hypothesised that discrepancies between self- and partner ratings would be associated with partners expressed emotion (EE), and replicate previous findings for associations with depression and carer distress. Method: Forty-six people aged over 65 with mild cognitive impairment or early-stage dementia were recruited through NHS mental health services for older people. In a semi-structured interview, they and their partners gave separate ratings of cognitive abilities and instrumental activities of daily living (IADL). Partners also completed a 5-minute speech sample task to assess the type of EE. Depression in cognitively impaired participants and partner distress were also measured. Results: High EE, depression and carer distress were associated with larger discrepancies in ratings of ability on the cognitive measure. EE was not associated with self-ratings or partner ratings of cognitive or IADL ability. Conclusion: The findings suggest that where disagreement about the abilities of an older person with cognitive impairments is greater, the affective environment around that person is more likely to be characterised by criticism and/or emotional over-involvement. The implications of this for assessment, diagnosis, and helping couples adjust to cognitive deterioration are discussed.

The influence of ‘cognitive busyness’ on causal attributions of challenging behaviour in dementia: A preliminary experimental study

This study investigated the influence of ‘cognitive busyness’ (competing cognitive demands) on residential care staff attributions of challenging behaviour (CB) related to dementia. Following the model of attribution formation proposed by Gilbert, Pelham, and Krull (1988), it was hypothesised that care staff experiencing competing cognitive demands at the time of observing CBs linked with dementia would be more likely to make internal and controllable attributions regarding the causes of such behaviour. This study employed a cross-over experimental design. Thirty formal dementia care-workers viewed two video clips of simulated CB, one under conditions of cognitive ‘busyness’ and another under control conditions of no extra cognitive demands. These conditions occurred a week apart and were counterbalanced, i.e. one group of participants undertook the control condition first and then the experimental condition whilst another undertook the reverse. Self-report measures of attributions were administered after the viewing of each video clip. Competing cognitive demands significantly influenced staff attributions regarding CB, in relation to internality and controllability, and type of CB emerged as a potential moderating factor. No link was found between cognitive busyness and other attributional dimensions (stability and globality). Concurrent cognitive demands seem capable of impairing the ability to use situational information to form some causal attributions regarding CB in dementia but this might depend on the type of CB being witnessed. The results are discussed in relation to key methodological and conceptual issues.

An interpretative phenomenological analysis of the experiences of older people self-managing cancer pain at home

ABSTRACT Cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group. Many older people are required to self-manage their cancer pain at home but this is currently an under-researched and poorly understood area. We explored the experiences of older adults who self-manage cancer pain at home using an Interpretative Phenomenological Analytic approach. Eight older adults (aged 72–85 years) were recruited from a hospital in the United Kingdom and interviewed using a semi-structured questionnaire. Themes which emerged from the analysis suggest the self-management of cancer pain involves a perceived loss of control followed by a temporal process of gaining control over pain. Subordinate themes reflected the physical and social restrictions caused by pain; leading to fears regarding familial burden. Participants utilized inner strengths, past experiences, and social support to cope. Successful self-management of cancer pain in late life is conceptualized utilizing a positive psychology framework.

A qualitative study of the shared experience of humour between people living with dementia and their partners

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: ‘Humour Has Always Been There (and Always Will Be)’; ‘Withstanding Dementia’ and ‘Renewing the Value of Humour in Dementia’. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.