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

Abstract

Background: 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.