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  • 1.
    Johannessen, Aud
    et al.
    Nordic Council of Ministers, Nordic School of Public Health NHV. Ageing and Health Norwegian Centre for Research, Education and Service Development Tønsberg, Norway.
    Möller, Anders
    Nordic Council of Ministers, Nordic School of Public Health NHV. Ersta Sk ö ndal , University Collage , Sweden.
    Experiences of persons with early-onset dementia in everyday life: a qualitative study.2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 4, p. 410-24Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The small number of existing studies confirms that people with early-onset dementia (EOD) need special assistance from the beginning and as the disease progresses. There is a need to develop services to respond to the specific needs of persons with EOD.

    AIM: To find out how people experience living with early-onset dementia, and to assess the implications for practice and the development of further services.

    METHOD: Grounded theory, a qualitative method, with interviews of 20 informants (aged 54-67 years; 12 of them men) during 2010-2011.

    FINDINGS: One category, the process toward a dementia diagnosis, covered two subcategories; describing changes and being diagnosed. Another category fighting for dignity describes how the informants try to maintain their quality of life, covering two subcategories; intrapsychic challenges and social challenges.

    CONCLUSION: Health services should give persons with EOD the ability to maintain contact with society and their voices should not be overlooked.

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