Experiences of persons with early-onset dementia in everyday life: A qualitative study

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.