‘Dementia as a source of social disadvantage and exclusion’ article is based on a study that emphasises the importance of viewing dementia as not just a medical issue that we need to respond to with appropriate health and aged care but from the point of view of a social issue and unpacking what that social environment is like.

However, in addition to seeing disadvantage as a consequence of certain social categories, the study points out that living with dementia itself creates unique forms of social exclusion.

Given the majority of people with dementia live in the community, the article argues, the conditions they live with and how they live is an important issue of citizenship, human and political rights. Therefore, these questions need to be examined: How do they live? How do they access services? Do their communities and friendship groups understand and accommodate them?

The study examines the lived experience of people with dementia through conducting 111 interviews across five Australian states with five types of participants groups: people with dementia, carers, health-care professionals, social care professionals and staff working in hospitality and other service professions.

People with dementia face multiple exclusion that affects: their lived experience, their friendships, partners and identity, how they live and what it is like accessing services when they are needed. The study “concentrates on their lived experience arising from living with or close to dementia. From this, it is argued that certain forms of social exclusion arise specifically from the experience of dementia itself.”

One of the study participants summed it up with this observation, “[People with dementia] become very isolated because the network of people in their life often don’t have the skills or the knowledge or the understanding to actually respond appropriately in a way that actually values people with dementia.” While people with dementia and carers desired inclusion in local communities, professionals wanted to know how to interact with them.

The study offers the perspective of the lived experience through the lens of citizenship and human rights and is consequently important to inform new policy and practice priorities.

(Authors: Simon Biggs, Ashely Carr and Irja Haapala)