Illness representations and informational expectations of patients and their carers in mild to moderate alzheimer's disease

Surveys of disclosure of a dementia diagnosis illustrate low rates of telling across different professional groups. The reluctance of carers to disclose the diagnosis of Alzheimer's disease suggests that they may hold different and more catastrophic views of the disease than the patients themselves. The aim of this study was to investigate the cognitive and emotional mechanisms (illness representations) by which patients with mild to moderate Alzheimer's disease and their carers conceptualise their understanding of the disease. A cross-sectional study design was adopted which employed both correlational and comparative analyses. Twenty people with Alzheimer's disease and twenty carers completed semi-structured interviews to gather responses to the Illness Perception Questionnaire (IPQ) and Geriatric Depression Rating Scale (GDS). Qualitative data was gathered regarding opinions relating to disclosure of dementia diagnosis. Comparison of patient's illness representations with those of other broadly comparable medical conditions found significance dependent on illness representation dimension and disease group. Patient's illness representations showed some significant associations between sub-scales. No associations between illness representation variables were found for carers. Carers' belief in more negative consequences was associated with high levels of depression attributed to the patient. No association between illness representation and depression variables was found for patients. Significant differences in illness representation and depression variables were found between patient and carer groups with carers attributing more severe symptomology, chronic time course and negative consequences to Alzheimer's than patients. The clinical and theoretical implications of these findings are discussed. Limitations of the present study are acknowledged and ideas for future research are presented.