Edward Tolhurst

Young onset dementia: The impact of emergent age-based factors upon personhood

This paper evaluates how emergent age-based factors may impact upon the experience of dementia. A review of selected literature is undertaken to explore how personhood has been conceptualised in relation to dementia. It is then highlighted that very little literature explicitly addresses personhood with reference to young onset dementia. Young onset dementia is defined, and evaluation is then undertaken of the distinctive age-based factors that might shape the experience of the condition. It is noted that whilst there are separate literatures on both personhood and young onset dementia, there appears to be little endeavour to draw these two strands of thought together. The distinctive factors that shape young onset dementia suggest that a more heterogeneous perspective should be developed that accounts more appropriately for how personal characteristics shape the lived experience of dementia. The paper concludes that further research should be undertaken that has an explicit focus on personhood and young onset dementia.

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

The concept of personhood developed by Tom Kitwood highlights that the experience of dementia has relational dimensions that transcend the neurodegenerative impacts of the condition. This relational focus, however, has been narrowly conceptualised, with the impact of broader sociocultural factors on experience underplayed. The empirical exploration of interaction also requires reinforcement: a tendency for dyadic studies to portray findings in an individualised format hinders the interrogation of interpersonal negotiations. This article draws upon qualitative research that employed a joint interview approach, interviewing men with dementia and their spousal carers together. The focus on a dyadic case study from this research enables methodical exploration of the experience of living with dementia. This is realised by considering the socially-framed perspective of each person, and then how their perspectives are interwoven within interactional exchanges. This provides a platform for the evaluation of the current decontextualised notion of personhood and its implications. It is concluded that a sociologically-informed perspective can help to reinforce the academic understanding of personhood.

Is living well with dementia a credible aspiration for spousal carers

ABSTRACT In England there has been substantial policy development and an academic drive to promote the goal of ‘living well’ for people with dementia and their family members. This article critically evaluates the feasibility of this intention, with reference to the experience of those caring for people with the condition. Qualitative data are utilised from a study which explored how couples negotiate relationships and care. The focus of this paper is the perspectives of spousal carers and the challenges they encounter within their caring role. Views were obtained via semi-structured joint interviews where the carer participated alongside the person with dementia. The extent to which living well with dementia is a credible aspiration for carers is examined via three themes: identity subsumed under care responsibilities; the couple as an isolated family unit; and barriers to professional support. The findings highlight that experience of caring is highly complex and fraught with multiple practical, emotional and moral pressures. It is asserted that research into dementia and care relationships must avoid a zero sum situation, prompted by living well discourses, where attempts to bolster the position of people with dementia compound the marginalisation and stigmatisation of informal carers.

An evaluation of Cognitive Stimulation Therapy sessions for people with dementia and a concomitant support group for their carers

This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.