Työikäisenä Alzheimerin tautiin sairastuneiden ja heidän puolisoidensa kokemukset sairauden alkuvaiheessa

Abstract

The purpose of this study was to describe the life situation and experiences of persons with early onset Alzheimer’s disease (AD) and their spouses with especial focus on psychosocial effects of the disease. The study was carried out by interviewing 12 persons under the age of 65 with early or mild AD together with, in 10 cases, their spouses. The interviews with the couples were done separately. The analysis was accomplished by coding themes and further categorizing them according to the principles of qualitative data analysis. Five main themes emerged: a changing life situation, receiving the diagnosis, learning to live with the disease, support from one’s social network and a new direction for living. The study showed that AD had extensive psychosocial effects already in the early stages, even in cases of good functional ability. Activities and roles were important in supporting and maintaining the identity and functional ability of a person with AD. The psychosocial effects were associated with gradual changes and losses experienced by both the person with AD and his/her spouse. The persons with AD and their spouses were coping by drawing on their individual resources and seeking support from their social network. Acceptance, resisting the effects of the disease and submission were the main coping styles of persons with AD. Spouses had many new roles, which can be experienced as a burden in the early stage of the disease. They also experienced changes and growing distance in their marital relationship. They coped by leading a normal life, understanding, resisting or controlling the effects of the disease. AD had effects on the child-parent relationship. Overall the study showed that if a family member has early onset AD, support should be made available already from the very beginning of the disease process. It is important that family members can obtain not only individual support in processing AD-related emotions and thoughts but also support in constructing a shared narrative, which is important on building family resilience. Future studies should examine the effect of early onset Alzheimer’s disease from the perspective of the whole family. It would also be important to follow the changes in subjective experiences during the progression of the disease.