Illness representations, or the way individuals perceive an illness, often shape responses to that illness, affecting the type and level of care and support administered to an individual, either by themselves or by those with caring responsibilities. A recently published paper co-authored by Catherine Quinn and Linda Clare from the Centre for Research in Ageing and Cognitive Health (REACH) at the University of Exeter and WISERD Director Ian Rees Jones considers the illness representations of caregivers of people with dementia. Utilising data from the Memory Impairment and Dementia Awareness Study (MIDAS) this paper undertakes content analysis on 50 semi-structures interviews with family caregivers of people with dementia to explore their understanding of their relative’s condition.
Results suggest that the majority of caregivers describe the person’s illness in a medical diagnostic way, with the majority citing biological factors as a major cause, although other causes such as hereditary factors, ageing, life events, lifestyle and environmental factors were also referenced. Relatively few caregivers in the sample were able to identify things the person with dementia could do to help manage their condition, with some feeling that there was nothing that could be done. Results suggest that there is considerable uncertainty about how dementia would progress over time amongst caregivers, who were found to have varying views on the effectiveness of medication.
Given these results, the paper suggests that more tailored information and support should be provided to caregivers that addresses these underlying beliefs. This information should focus on the causes of dementia, the timeline of the illness and techniques for its management. Gaining an understanding of caregivers existing illness representations will help to tailor such information to meet their individual circumstances, helping them to care for someone with dementia.
The full article, published by the Journal of Aging and Mental Health can be downloaded here. The research has been undertaken as part of the Improving the Experience of Dementia & Enhancing Active Life (IDEAL) project.