Towards living well with dementia: an exploration of coping from the perspective of those diagnosed.

Abstract

This thesis consists of two sections. Section one is a review of the literature on coping with dementia. It presents and evaluates the existing research evidence on how individuals cope with: the general experience and symptoms of dementia; the impact of dementia on self; and memory loss. The findings suggest that individuals employ a variety of strategies to cope with their experience of dementia. These include self-protective and self-adjusting strategies and emotion-focused and problem-focused coping. Coping was identified as a dynamic process situated in an interpersonal framework. Gaps in methodological and conceptual understandings are highlighted and implications for clinical practice and further research are discussed. Section two is a qualitative research report exploring the experience of living with and adjusting to Alzheimer’s (AD) disease in younger life. Semi-structured interviews were conducted with eight participants under the age of 65 years with a diagnosis of AD. Interpretative Phenomenological Analysis (IPA) identified four super-ordinate themes: ‘disruption of the life cycle’, ‘identity’, ‘social orientation’ and ‘agency’. Participants felt too young to develop AD, which was typically associated with old age. AD was experienced as a threat to self, a loss of agency and a sense of disconnection from others. Coping emerged as a cyclical process of attempts aimed at counteracting the above experiences. Participants developed ways of managing self-identify, reconnecting with others, taking control and reviewing life. The findings are situated in the human development and life-cycle literature. Implications for research and clinical practice are discussed.