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UBC Theses and Dissertations

Institutionalization of a spouse with Alzheimer's disease : a phenomenological study of the experience of the elderly wife caregiver Whytock, Sandra Anne


This study describes the experience of the elderly wife caregiver during the initial period of institutionalization of her husband with Alzheimer's disease. Phenomenology was the research method used because of its unique focus on revealing an experience from the perspective of the participant. Because problems in health care arise from the differing perspectives of professionals and lay persons, discovery of the caregiver's perspective was considered to be essential in order for professionals to provide care which is sensitive to caregiver needs. Data were collected through 16 interactive interviews with 8 wives who were between 64 and 78 years old, and whose husbands with Alzheimer's disease had been living in an institution for between 4 and 13 months. Reflective analysis proceeded concurrently with interviews and continued following interview completion. The insights achieved were synthesized and integrated into a consistent description of the experience. Throughout the accounts of the experience, uncertainty was the pervasive and unifying theme. The uncertainty which the wives experienced was described as having its source in two forms of separation. These two forms of separation, separation of husband from home, and separation of husband and wife, had parallel structures which included expressions of uncertainty, factors influencing uncertainty and management in the state of uncertainty. Uncertainty was the way in which wives experienced both continuing responsibility for their husbands' well-being and lives as married widows. The summary description of the total experience for the wives was that it was worse than death. The findings confirm that the wives' burden is not relieved by institutionalization of their husbands. Thus they also confirm the continuing need for caregiver care. The findings also demonstrate that failure of professionals and others to understand the experience from the wives' perspective contributes to caregiver burden following institutionalization of husbands with Alzheimer's disease.

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