Aud Johannessen1, Anders Möller. 1. Norwegian Centre for Research, Education and Service Development, Norway; Nordic School of Public Health, Sweden.
Abstract
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.
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.
Entities:
Keywords:
early-onset dementia; health promotion; health services; subjective experiences; young persons with dementia
Authors: Emma Harding; Mary Pat Sullivan; Rachel Woodbridge; Keir X X Yong; Anne McIntyre; Mary L Gilhooly; Kenneth J Gilhooly; Sebastian J Crutch Journal: BMJ Open Date: 2018-02-08 Impact factor: 2.692
Authors: Aud Johannessen; Knut Engedal; Per Kristian Haugen; Marcia Cristina Nascimento Dourado; Kirsten Thorsen Journal: Int J Qual Stud Health Well-being Date: 2018-12