The subjective experience of individuals with Down syndrome living with dementia

Abstract

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.

Working alongside older people with a learning disability: informing and shaping research design

“…When recommending strategies for supporting individuals with dementia, the Alzheimer's Society (2005, cited in Lloyd et al ., ) emphasise the need to empower individuals by enabling them to have as much control as possible, trying to gain an understanding of their feelings and causes of negative emotions and/or behaviour. Within research, this translates into understanding and exploring the perspectives and experiences of people with learning disabilities and dementia (Watchman, ).…”

“…Additionally, it is important to engage people through an individualised approach, enabling the exploration of once unexplored experiences and perceptions. For example, Lloyd et al ., () explored the perspectives and subjective experiences of six people with Down syndrome and dementia through individual interviews. This qualitative methodology provided the most appropriate context for facilitating and ‘including the perspectives of vulnerable people’ (Gibbs & Read, , p. 233).…”

How do people with learning disabilities experience and make sense of the ageing process?

“…The contribution of current studies to understanding the experience of old age has also been compromised by the fact that they have included participants aged over 40 (Lloyd, Kalsy & Gatherer, 2007;Thompson, 2002) or 50 (Buys et al, 2008) so the experiences of older people have been combined with those of middle-aged people. I hope to address this by looking at the experiences of people aged over 60.…”

“…Less attention has been paid to how people with learning disabilities experience and make sense of changes in themselves and their environment. Lloyd, Kalsy and Gatherer (2007) conducted the first published study of the subjective experience of people with Down's Syndrome living with dementia. They conducted semi-structured interviews with six people with Down's Syndrome.…”

“…Jenkins (2010) attempted to take a phenomenological approach to exploring older people with learning disabilities' views of ageing but the study did not successfully capture how participants viewed and experienced ageing. Lloyd, Kalsy and Gatherer (2007) used IPA to look at people's experiences of old age and how they made sense of the experienced changes, but this was limited to people with Down's Syndrome and dementia. There is a lack of work exploring the subjective experience of ageing for people with learning disabilities, taking into account their perceptions of the concept of ageing, how they experience and make sense of their own ageing process, and what meaning this has for their identity.…”