| Summary: | This thesis provides insight into the experiences of younger people (under 65 years) living with dementia. Hitherto, little was known about these experiences, as research has largely concentrated upon older people in the early stages of dementia, focusing on loss, coping and awareness. Until recently, people with dementia were excluded from research, as it was thought they were incapable of expressing themselves or reflecting on their experiences. This is now seriously challenged. This thesis presents the results of a study involving 14 younger people living with dementia. Sixteen carer accounts augment these experiences. Through in-depth semi-structured interviews, the younger people describe their experiences of living with dementia on a daily basis. Constructivist grounded theory was used to explore and analyse these data. Four key categories emerged that captured participants' experiences: the search for meaning, experiencing loss, coping practically and making sense of the experience of living with dementia. Loss was a major experience for the younger people, encompassing loss of memory, skills, independence and control over key decisions about their future. For carers, the experience of loss related to their partner as well as to the lifestyle changes brought about by their partner's condition. In terms of coping, the younger people seemed to adopt a 'use it or lose it' approach, focusing on abilities that remained. Carers' responses seemed less positive, focusing on what was lost. Most participants sought explanations why they or their partner had developed dementia, often finding medical explanations inadequate. Younger people and carers also sought to make sense out of the experience of living with dementia. Theories of biographical disruption and narrativisation were helpful in exploring these questions of meaning. Most younger people adopted narratives of acceptance and fatalism. Carers struggled to make sense why their partner developed dementia. Their accounts seemed closer to chaos narratives with little hope for the future. The experience of dementia seems to come at an untimely time in mid-life. With little cultural representations to draw upon to normalise memory loss to old age, younger people felt they were 'out of time' and 'too young' to be experiencing dementia. Carers felt similarly, their role in caring for a partner also appears to have come too soon.
|
|---|
