Understanding the lived experience of dementia in individuals with Down syndrome
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.