Early Onset Dementia & Non-Kin Relational Change

Our Aim

There are critical gaps in knowledge on the ways early onset dementia can affect interpersonal connectivity beyond the family structure, and how these impacts may transform over time as symptoms develop. Consequently, the dynamics of non kin relational change and if, how and why individuals with early onset dementia require support in sustaining, improving, or developing new relations, along with accepting changes to existing ones are not sufficiently understood.

This research will identify the non kin relations central to the lives of participants with early onset dementia within the life spheres of community, leisure and work, and map any changes with respect to these relations, in terms of quantity, meaning and quality, post dementia onset. It will examine the drivers of any relational change in these spheres and the extent to which such changes are a consequence of dementia in terms of its symptoms, its management and its construction within society. The extent to which relational changes might be associated with the continuum of integration, from inclusion to exclusion, in each of the spheres will also be deliberated, along with the role of kin relations in mediating changes to non kin relations. Data collection will involve interviewing both people with early onset dementia as well as their key non kin relations.

The study will contribute to a much needed evidence base that can be utilised to inform the most appropriate methods to support this relational dimension of the lives of people with early onset dementia.

Partners & Collaborators

• Kieran Walsh
• Eamon O’Shea
• Kashie Prendergast