Lloyd, Victoria K. (2005) Understanding the lived experience of dementia in individuals with Down syndrome. DClinPsych thesis, University of Warwick.

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Abstract

Previously published studies have highlighted the increased risk of dementia in
individuals with Down syndrome but little is known about the impact of the disease
on their daily lives. The aim of this research was to explore the lived experience of
dementia in people with Down syndrome. The literature review discussed the
utilisation of qualitative interview methodology with individuals with expressive
language deficits. It was concluded that, whilst such research remains relatively
limited due to potential difficulties it presents, these challenges can and should be
overcome in order to better understand the perspectives of those with limited
communication skills. The first empirical research study conducted semi-structured
interviews with 6 adults with Down syndrome and dementia. Accounts were analysed
using Interpretative Phenomenological Analysis 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 concurrent
intellectual disability. The second empirical research study investigated the objective
and subjective impact of dementia upon residential caregivers of individuals wTith
Down syndrome, using questionnaire measures. Responses given by caregivers 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). Findings suggested that, whilst there was little difference in the
level of caregiving tasks or the perceived difficulties of caregiving, caregivers of
individuals with Down syndrome and dementia reported increased levels of emotional exhaustion. For both empirical studies, methodological issues and clinical
implications were discussed. A reflective paper considered the process of conducting
this research, including the development of the research question, the researcher's
own position, issues of ethics, data collection, transcription, analysis and writing up.
The paper concluded by considering the impact of the research, both in wider context
and on personal clinical practice, the impact of others on the research process and
personal reflections.

Item Type:	Thesis (DClinPsych)
Subjects:	R Medicine > RC Internal medicine
Library of Congress Subject Headings (LCSH):	Down syndrome, Dementia, People with mental disabilities
Official Date:	May 2005
Dates:	Date Event May 2005 Submitted
Institution:	University of Warwick
Theses Department:	Department of Psychology
Thesis Type:	DClinPsych
Publication Status:	Unpublished
Supervisor(s)/Advisor:	Kalsy, Sunny ; Gatherer, Amanda
Description:	Completed in conjunction with Coventry University. School of Health and Social Sciences
Extent:	x, 162, [16] leaves
Language:	eng

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