The Lived Experience of Dementia: Developing a Contextual Theology

A variety of themes are explored as the basis for developing a contextual theology of dementia. These include impairment, loss, dislocation, isolation, decline, and death. These themes represent immanent human concerns with various kinds of experiences of “self-emptying.” It is suggested that dementia presents a kind of “malaise of immanence,” within which there is progressive inability to focus on abstract transcendent concerns, and increasing preoccupation with the immediate immanent context. A contextual theology of dementia that exaggerates the importance of the immanent frame is likely to emphasize, and draw to our attention, concern about such things within that frame as cognitive decline, dependence upon others for care, and loss of hope. However, a Christological perspective is offered within which it is acknowledged that such places of self-emptying are also places of transcendent encounter, and that in Christ we may understand the participation of God in the darkest moments of human experience.     

Dementia care‐giving in black and Asian populations: reviewing and refining the research agenda

Despite the increased prevalence of dementia little work has been done to explore the extent and nature of care‐giving in black or Asian‐UK populations. Evidence that does exist suggests that the consequences of care‐giving are significant but different from those experienced by white carers and are mediated by a number of culture‐related factors. These include: ethnically specific conceptualisations of dementia; expectations of family duty; religiosity; the adoption of positive re‐appraisal strategies, and beneficial outcomes. Present approaches to research are narrow, do not take account of cultural dimensions and employ terminology and care‐giving frameworks which are of limited relevance. That the evidence base is characterised by small‐scale studies, and weak methodology further undermines its validity. Research deficits are systemic and fundamental and are both conceptual and methodological. A key contribution would be the development of a multi‐dimensional theoretical model that takes account of the role played by culture, ethnicity and structural inequality in shaping care‐giving experiences and profiles. Incorporating the perspectives of black and Asian carers, and the influence of the life course of individuals and communities and employing qualitative methods would also influence the direction of research, improve its quality and generate knowledge in this underdeveloped field. Copyright © 2005 John Wiley & Sons, Ltd.     

Coping with the Uncontrollable: The Use of General and Religious Coping by Caregivers to Spouses with Dementia

SUMMARY

Using a transactional model of stress and coping, we examined the general (i.e., Problem-Focused, Emotion-Focused) and religious (i.e., Self-Directing, Collaborative, Deferring) coping strategies used by 64 caregivers to spouses with dementia to cope with their most significant, albeit uncontrollable, caregiving hassle over a two-month period. With respect to general coping, we hypothesized that caregivers who used Emotion-Focused coping would demonstrate fewer Depressive Symptoms at Month 2 after controlling for Depressive Symptoms at Month 1. With respect to religious coping, we hypothesized that care-givers who used Deferring Coping would also demonstrate fewer Depressive Symptoms. Results revealed interesting patterns between caregivers' use of general and religious coping strategies. Contrary to our hypotheses, caregivers who used Emotion-Focused and Collaborative coping reported greater Depressive Symptoms. Implications for the empirical study of stress and coping and directions for future research are discussed.     

Dementia with Lewy bodies: a pure case

A pure case of autopsy-confirmed dementia with Lewy bodies (DLB) is described. The patient presented with distinctive verbal fluency deficits in the context of mild language impairment, intact recognition memory, and impaired paragraph recall. Neuroimaging (CT and SPECT) showed progressive medial temporal lobe atrophy. Neuropathology revealed Lewy bodies, degeneration in the substantia nigra, nucleus basalis of Meynert (Nakano & Hirano, 1984), and locus ceruleus, but no pathology characteristic of Alzheimer's disease. It is in this sense that the case is "pure" DLB. Early neuropsychological diagnosis of DLB is essential (Salmon et al., 1996) given the potentially fatal hazard of neuroleptics (McKeith et al., 1992) and the difficulties associated with clinical neurological diagnoses (Litvan et al., 1998).     

‘The Good Mother and Her Clinging Child’: Patterns of Anchoring in Social Representations of Dementia Caregiving

This paper discusses the findings of a study that examined the processes of anchoring in the understanding of dementia caregiving using 29 interviews conducted in Germany with wives and daughters caring for a relative with dementia and 43 newspaper articles pertinent to the research objective. The concept of anchoring from Social Representations Theory was complemented by elements from cognitive linguistics to analyse the social representations (SRs) that served as source domains to determine what the target domain of dementia caregiving means, entails and requires. The analysis revealed three prevalent patterns of anchoring dementia care in SRs of child care and the good mother. The first pattern ascribed the role of the helpless clinging child needing his mother to the dementia patient, the second emphasised that the dementia caregivers' responsibility for caring, just like motherhood, should take precedence over all other interests and the third consisted of dementia caregivers deriving the perception of being the most suitable caregiver from the mother's natural aptitude for caring. The conclusions reached by the different patterns are argued to contribute to dementia caregivers overexerting themselves and not using support services. The clinical implications for targeting such adverse effects of the anchoring will be discussed. Copyright © 2013 John Wiley & Sons, Ltd.     

The Feeling-Tone Questionnaire: Reliability and Validity of a Direct Patient Assessment Screening Instrument for the Detection of Depressive Symptoms in Cases of Dementia

The purpose of this study was to develop a reliable and valid measure of affective disorder in elderly demented patients. The field lacks instruments which are sensitive to detecting depressive signs in severely as well as mildly and moderately demented subjects. Two samples of subjects were chosen for study. The first sample consisted of subjects from six institutions, which were chosen for study from a probability sample of 25 long-term care institutions in New York City. This sample was part of the Cross-National Institutional Study conducted in New York and London (Gurland et al., 1979; Mann et al., 1984). Thirty patients were selected at random within each institution. The second sample consisted of 52 inpatients at Willard Psychiatric Center, a traditional state psychiatric hospital in upstate New York. All subjects had a chart diagnosis of dementia and were 60 years old or older. The mean age of the sample was 82 years and 56% of the subjects were female. The Feeling-Tone Questionnaire, which was developed for these analyses, consists of 16 dichotomous items and 16 5-point Likert ratings of affect. The reliability of this scale using Cronbach's alpha is .91 for the long-term care institutional sample and .90 for the psychiatric hospital sample. Interrater reliability for two raters on ten cases is .99. Test–retest reliability on ten cases with a 1-day to 2-day interval between trials is .81. A short mood scale was developed from the observational data as a validity measure for the Feeling-Tone Questionnaire. Evidence for the validity of the Feeling-Tone Questionnaire is provided.     

The Brief Cognitive Impairment Scale (BCIS): preliminary investigation of a severe-stage dementia test emphasizing cognitive processing and interpersonal tolerance

We describe the development and validation of The Brief Cognitive Impairment Scale (BCIS), a cognitive screening instrument designed for persons with severe-stage dementia. Psychometric analyses were performed on neuropsychological data from long-term care residents (N = 247) who completed a brief battery of tests, including the BCIS. A principle component analysis yielded three factors that provide insight into how persons with severe dementia cognitively process information and may tolerate specific aspects of social stimulation, such as during personal care. A BCIS cut score can be used to identify severe dementia with a sensitivity of .82, a specificity of .84, and an area under the curve of .89. It may be used by clinicians or caregivers when advanced dementia is suspected, as an alternative to measures with suspected floor effects, when residents cannot tolerate more demanding assessment tools, and as part of non-pharmacologic treatment plans for behavior disturbances associated with dementia.     

The Lost Voice: How Libertarianism and Consumerism Obliterate the Need for a Relational Ethics in the National Health Care Service

This article analyzes the contribution Christian ethics mightbe able to make to the ethical debate on policy and caregivingin health and social care in the United Kingdom. The articledeals particularly with the concepts of solidarity and subsidiaritywhich are essential in Christian social ethics and health careethics, and which may be relevant for the ethical debate onhealth and social caregiving in the United Kingdom. An importantargument in the article is that utilitarian and market-drivenpolicies in the National Health Service (NHS) and the socialcare system have marginalized the position of the elderly andhave seriously impoverished the quality of care for the elderly.The neglect of the elderly and other vulnerable groups is alsothe result of widespread consumerist attitudes among patientsand of libertarian models of noninterference which are affirmedby a public ethos of self-sufficiency and counter-dependency.Those who need care dare not make their need known to othersand ask for help, while simultaneously those who could helpare so intimidated by the public affirmation of privacy andnegative rights that they do not dare to offer help except ifthis is explicitly demanded. This distant and standoffish attitudeis in an important way responsible for the fact that the voiceof those in need is altogether lost to the public forum. Christianethics puts much emphasis on responsibility and solidarity withthe needy other but is not able to have much impact on the deliveryof care in a secularized society and health care system likethe NHS. Nonetheless, Christianity still has a powerful andrespected voice, by speaking up for those who cannot speak forthemselves, such as the elderly and the handicapped. Christianscan find allies in the ethics of care and other relational approachesin health care ethics in order to combat libertarianism, consumerism,and utilitarianism.     

Losing My Religion as a Natural Experiment: How State Pressure and Taxes Led to Church Disaffiliations between 1940 and 2010 in Germany

The sociological literature has produced a remarkably consistent picture of the quantitative patterns of religious disaffiliations in Western countries. This article argues, and demonstrates, that strong changes in a social context may lead individuals to disaffiliate rapidly, leading to very different aggregate effects from those in the “western model.” We use the unique situation of the separation of Germany from 1949 to 1989 and its subsequent reunification as a “natural experiment” to show just how much the relationships routinely found can be disrupted under changed conditions. The state socialist “treatment” affected religious disaffiliations in East Germany profoundly as it (a) made disaffiliations 10 times more probable in the East than in the West in the 1950s and 1960s, (b) shielded East German church members from factors that led to mass disaffiliations in the West in the late 1960s and early 1970s, (c) reversed the education‐disaffiliation link in the East, thus making disaffiliation more likely among the less educated, and (d) led to an especially strong increase in disaffiliations in the East right after the reunification