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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