How is care organized for younger people with dementia? Types of support, measures, and satisfaction among people with young onset dementia and their families.

Young Onset Dementia (YOD) can bring about different challenges compared to Late Onset Dementia (LOD). Yet, evidence points to the fact that the needs of persons with LOD are also applied to persons with YOD. YOD affects all aspects of life, from working life to family dynamics, and families often need comprehensive support.

However, there is a huge knowledge gap regarding the type of support persons with YOD and their families receive, as well as how they experience the support.The aim of the project is to survey types and use of services and support measures available and the conditions for equal services among persons with YOD and their family members, and to explore application of person-centered care, change of needs and satisfaction of support during the trajectory of dementia among persons with YOD and their family members.The project consists of three work packages (WP) including mixed methods.

In WP 1 data from the quality register SveDem will be used to map support provided and to follow longitudinal care trajectories of persons with YOD by growth curve modeling. WP 2 is a case study, where data will be collected at four occasions for 18 months.

Interviews, diary notes and questionaries will be collected from couples where one partner has YOD to increase understanding on needs and received formal support. Data will be analyzed using thematic analysis and descriptive statistics.

WP 3 will use data from SveDem to identify care and activities for persons with YOD in residential care by multiple regression.

As part of WP 3 a situational analysis study including interviews and documents targeting experiences and organization of care, support and activities among persons with YOD living in residential care will also be performed.The project will generate a more comprehensive understanding of the needs of people with YOD and their families and can identify shortcoming as well as valuable aspects of support and need for future important interventions.