title: The meaning of living close to a person with Alzheimer disease.
abstract: Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease (AD). The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses' lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses' lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended "lived space" with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective.
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Neurogeriatrics, Karolinska Institutet, 141 57, Huddinge, Sweden. mette.bergman@ki.se.
authors.forename: Mette
authors.identifier: http://orcid.org/0000-0002-7018-1578
authors.initials: M
authors.lastname: Bergman
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Neurogeriatrics, Karolinska Institutet, 141 57, Huddinge, Sweden.
authors.forename: Caroline
authors.initials: C
authors.lastname: Graff
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Clinical Geriatrics, Karolinska Institutet, 141 57, Huddinge, Sweden.|Department of Geriatric Medicine, Memory Clinic M51, Karolinska University Hospital, 141 86, Huddinge, Sweden.
authors.forename: Maria
authors.initials: M
authors.lastname: Eriksdotter
authors.affiliation: Department of Neurobiology, Care Science and Society, Division of Social Work, Karolinska Institutet, 141 83, Huddinge, Sweden.|Division of Social Work, Karolinska University hospital, 141 86, Huddinge, Stockholm, Sweden.
authors.forename: Kerstin S
authors.initials: KS
authors.lastname: Fugl-Meyer
authors.affiliation: Department of Technology & Welfare, The Red Cross University College, Box 55676, 102 15, Stockholm, Sweden.
authors.forename: Marja
authors.initials: M
authors.lastname: Schuster
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000328:Adult; D000544:Alzheimer Disease / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D018454:Spouses / Q000523:psychology*
keywords: Alzheimer disease; Early-onset; Interpretative phenomenology; Lifeworld; Professional approach; Spouses