“The lights are on but nobody is in”: Social representation of dementia, a comparative study of caregiver and non-caregivers

Background and Objectives. People living with dementia continue to endure widespread stigma and exclusion in society. The current study used social representation theory to identify the beliefs, attitudes and understandings the public have towards dementia. Recruiting a group of caregivers, the study was able to present a side-by-side comparison with the public, allowing specific cognitions likely to be grounded in myth and misconception to be identified.

Methods. Two-hundred and twenty-one participants completed a free association task in response to the stimulus word ‘dementia’, and subsequently provided a short justification for each of their five responses. Participants were split into two groups: those who had never provided support for those living with dementia (n = 101) and those who had, presently or previously, whether in a personal, paid or voluntary capacity (n = 120). Prototypical analysis was then used to ascertain the structure and content of each group’s social representation of dementia, presenting the distinction between core and periphery beliefs and understandings through the construction of a matrix for each group.

Results. In each of the group’s social representations a biomedical dimension formed a core part of how dementia was perceived and understood, however they differed in their portrayal of the individual affected. For the caregiver group, the symptoms listed were portrayed as affecting a loved-one who personhood persevered, whereas in the non-caregiver group there was a concerning frequency with which the condition was portrayed as replacing the individual, leaving them a vacant and draining bearer of their condition.

Conclusions. The study found an alarming level of stigmatising and dehumanising attitudes in the non-caregiver group. Emphasising their expertise, the current study recommends that those affected by dementia are given a central role in raising awareness of dementia, with the aim of humanising the condition for those who otherwise have little contact with the condition.