When the Lifeworld Texture Ruptures : Experiences of Living with Dementia

Abstract

This thesis is focusing on the lived experience of dementia. Both living with a partner as well as living alone. There is no unequivocal picture of how it is to live with dementia and few studies have been carried out in homes of afflicted persons. A deeper understanding of how it is to live with dementia can be a good starting-point for caring and the organisation of care.    The aim of this thesis is to describe, clarify and explain the lived experience of dementia from a lifeworld theoretical point of view. Another aim is to illuminate how decision makers look upon persons with dementia, their life and their care. Interviews and observations have been used to collect data. Participating informants have been couples with one partner suffering from dementia, persons with dementia living alone, politicians, administrators and social workers. Data was analysed with a phenomenological and a hermeneutical approach.   To live as a couple where one part has dementia (study 1) implies to live in a heteronomous existence where both the person with dementia and the partner become strangers in a world that should be the most well-known and familiar. The couple’s existence is narrowed and controlled by the impact of the dementia disease and the existence  is characterised of hopelessness and homelessness.   To live alone with dementia (study 2) means to live with a broken identity when the person with dementia gradually loses the memory of himself and his life. It becomes a life where the world of the individual is reduced to a quiet background that does not demand attention. The person with dementia does not longer know how he or she should relate to the world. The existence is characterised by a strong sense of loneliness and only a vague knowledge of the situation. The person with dementia longs for other people and gets a sense of boredom in the existence.   The comprehensive interpretation (study 3) shows that life with dementia is characterised by a gradual loss of meaning in life due to a disturbed intentionality. With disturbed intentionality the person with dementia gets increasingly more difficulties in understanding the meaning of the use of everyday objects. The person with dementia fights this and tries to create meaningfulness in the existence – something which gets very difficult and strenuous in time, since even the easiest everyday chores have to be thought through to make sense and even to be accomplished. The effort can in time become overpowering for the person with dementia who then stops doing the chores and becomes passive.   Politicians, administrators and social workers (study 4) are well aware that dementia gives suffering to the afflicted and the partner. The care is not designed to meet their needs for home care, and the decision makers don’t know how to change this. The person with dementia becomes like an object when the social workers don’t includes them in a dialogue about their needs and care. The partner is left alone in solving difficult problems and in making difficult decisions.   The theory of intentionality can help the professionals in the care of persons with dementia. By helping the cared-for-person to ‘stretch the intentional threads’ the caregivers can give the person a possibility to be rooted in the world. A care that supports intentionality and identity and reaches all the way in to the homes of the person with dementia would improve their situation and increase their well-being. This is possible when engaging the person in every-day chores that promote meaning. This kind of care contributes to the possibility for the person with dementia to be rooted in language, time and space.