Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia

Abstract

Aud Johannessen,1,2 Knut Engedal,1 Per Kristian Haugen,1 Marcia CN Dourado,3 Kirsten Thorsen1,41Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 2Campus Vestfold, University of South-Eastern Norway, Tønsberg, Norway; 3Center for Alzheimer’s disease, Institute of Psychiatry, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil; 4Norwegian Social Research, Oslo Metropolitan University, Oslo, NorwayBackground: People with younger onset dementia (YOD <65 years) experience a great transformation of existential life. Living alone, they lack the support of a partner, and have a higher risk of moving into a residential care facility.Aim: To explore how people living alone with YOD experience and cope with transitions during the progression of dementia.Method: A longitudinal qualitative approach was used. From 2014 to 2018, we interviewed 10 persons with YOD every 6 months for up to four years.Findings: Two significant main transitions and themes were registered under the perspective; experiencing and coping with (1) receiving the diagnosis of dementia and (2) moving to a residential care facility, which covers two subthemes: moving to a supported living accommodation and moving to a nursing home. To get the diagnosis was initially experienced as a dramatic disaster, while moving to residential care were mainly experienced as positive. With efficient cognitive and emotion-focused coping strategies, the participants adapted and experienced a mostly good life for a long time.Conclusion: People with dementia can describe their lived experiences for a long time after receiving the diagnosis. They adapt and preserve a feeling of a rather good life by the efficient use of various coping strategies. High-quality public support is of significant importance to assist them in sustaining quality of life and vitality.Keywords: early-onset dementia, existential needs, health care services, health promotion, qualitative study, transition

Keywords

• early-onset dementia
• existential needs
• health care services
• health promotion
• qualitative study
• transition