The experience of research participation and the value of diagnosis in dementia: Implications for practice

Abstract

Abstract Aims : To examine the effect on patients and carers of being told the diagnosis of a dementing illness such as Alzheimer's disease, to explore the perceptions of carers and, as far as possible, of patients regarding their experience of research participation, and to evaluate our own practice in relation to meeting the information needs of patients and families. Methods : Postal survey with quantitative and qualitative elements sent to the main carers of 90 patients participating in The Oxford Project to Investigate Memory and Ageing (OPTIMA). Results : Seventy-nine questionnaires were completed. Analysis of data revealed an overall positive response from patients and carers to research participation. Carers were eager for all information. Looking at brain scans was helpful in the explanation of the organic changes caused by the disease. Despite mixed reactions to the diagnosis of a dementing illness, most carers preferred to know. Conclusions : Carers indicated that patients and families can benefit from early disclosure of diagnosis. This requires early referral, sensitive and ongoing support and further research into patients' reactions.