New thesis studies changes in the life situation of younger persons with dementia and their family members

The main focus of my thesis is to enhance the knowledge and understanding of critical points and transitions in young-onset dementia. The thesis focuses on how younger persons diagnosed with dementia and family members experiences their life situation. Persons with young-onset dementia were also asked to rate their own quality of life.

Which are the most important results?  

On a group level, quality of life seems to remain stable over time. However, there is great variation in individual trajectories. Four critical points clearly emerged from the interviews with persons with young-onset dementia and the interviews with family members. These were related to receiving the diagnosis, the premature ending of working life, not receiving formal support, and relocation to a residential care home. In addition, the thesis highlights the complexity of master a change life situation and the importance of preventing social isolation as a means of facilitating healthy transitions. 

How can this new knowledge contribute to the improvement of people's health?  

Dementia is often associated with old age and most research has because of that focused on the needs of persons with late onset dementia. My thesis addresses the needs of younger persons and their family members. As there is a need to increase the awareness of young-onset dementia, I hope that my thesis can contribute to improving the support for persons with young-onset dementia and their families. 

What's in the future for you? Will you continue to conduct research?  

I am employed at Karolinska University Hospital and my plan is to continue working at the hospital. Parts of my thesis are based on data from a longitudinal project that is still ongoing, so I will continue to collect data and look forward to analyzing these data in the future.