Public involvement to disseminate scientific findings in dementia care research: A quantitative survey on informal caregivers of people living with dementia

Abstract

AbstractBackgroundPeople living with dementia and their caring relatives can be involved in all phases of research, including the dissemination of research results. This involvement requires access to scientific findings and easily understandable results’ communication. Here, we investigated how informal caregivers of people living with dementia feel informed about the disease and how they want to be involved in the dissemination of research results.MethodWe surveyed informal caregivers of people living with dementia quantitatively with a semi‐structured questionnaire. Recruitment of participants was done through low‐threshold support groups of the local Alzheimer's Society. The questionnaire included open‐ended and closed‐ended questions on the subjective state of knowledge about dementia and the willingness to participate in the dissemination of scientific results. The data were analyzed descriptively.ResultWe sent 45 questionnaires by post with a response rate of more than one half (n = 23). The majority of participants (agemean = 70.4 years, 30.4% male) felt well informed about dementia (87.0%). Respondents who were willing to participate in the dissemination of research results (30.4%) wished to inform others in their private environment, e.g. friends or relatives. Respondents did not want to give lectures at scientific conferences or to be involved in writing articles for scientific journals.ConclusionThe desire of the respondents to disseminate research results in the private environment could be met by appropriate peer training, which prepares informal caregivers of people living with dementia for low‐threshold communication of scientific findings. We may need to move away from the idea of integrating the public into science. Instead, we need to integrate science into the public and into the life of lay people.