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The subjective experience of individuals with Down syndrome living with dementia
- Authors:
- LLOYD Vicki, KALSY Sunny, GATHERER Amanda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 6(1), February 2007, pp.63-88.
- Publisher:
- Sage
An increasing number of studies have begun to explore the subjective experience of individuals with dementia. However, despite the increased prevalence of dementia in individuals with Down syndrome, no such published research has been undertaken within this population. The aim of this study was to explore the perspectives and subjective experiences of six individuals with Down syndrome and dementia. Semi-structured interview accounts were analysed using Interpretative Phenomenological Analysis, in order to gain a level of understanding concerning the impact of dementia upon respondents’ lives and sense of self. Five main themes emerged: (1) Self-image, (2) The Relational Self, (3) Making Sense of Decline,(4) Coping Strategies and (5) Emotional Experience. Whilst the process of adjusting to dementia appeared comparable to the general population, the content of this was influenced by multiple levels of context specific to having a concomitant intellectual disability.
Impact of dementia upon residential care for individuals with Down Syndrome
- Authors:
- LLOYD Vicki, KALSY Sunny, GATHERER Amanda
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 5(1), 2008, pp.33-38.
- Publisher:
- Wiley
In this exploratory study, the authors examined the objective and subjective impact of dementia upon paraprofessional paid carers of individuals with Down syndrome working in residential settings. The study used the Caregiver Activities Scale -Intellectual Disabilities (CAS-ID), the Caregiver Difficulties Scale - Intellectual Disabilities (CDS-ID), and the Maslach Burnout Inventory (MBI). Responses given for these measures by paraprofessional carers of individuals with Down syndrome and dementia (n = 9) were compared with responses from those caring for recipients with Down syndrome and no additional cognitive decline (n = 11). No significant differences were found in the responses from these sets of carers on measures of objective (CAS-ID) or subjective burden (CDS-ID). However, the MBI revealed that carers of individuals with Down syndrome and dementia reported significantly increased levels of emotional exhaustion. Findings suggested that, while even when there is little difference in the level of caregiving tasks or the subjective difficulties of caregiving, the onset of dementia in individuals with Down syndrome resulted in increased emotional exhaustion for carers. Additional factors not considered within this study, such as challenging behaviour, may also be pertinent to carer burden.