Dementia prevention: Shared questions for research and clinical management

The emergence of advanced genetic technologies raises many challenges for dementia care and the conduct of related social, behavioural and clinical research. Genetic tests are already used to identify possible participants in dementia prevention trials. These tests are unlike any other in clinical medicine as they have the capacity to predict disease onset after intervals of many years with implications for other family members. Genetic counselling professionals support services in paediatrics, cancer diagnosis and some adult-onset diseases. Their capacity cannot meet the needs for pre- and post-test support of the many “at-risk” families living with late onset dementia. Most dementias are common, complex conditions in which multiple genetic and environmental factors play important and potentially modifiable roles. Large scale prevention studies are needed to test the effectiveness of interventions. Some economy of effort will be achieved by the preferential inclusion of “at-risk” families. Many such families are in contact with dementia care services and will be motivated to participate in prevention studies. However, practice standards and consensus-based guidelines do not yet exist. Support services are not available on a scale sufficient to prevent harm when risk is poorly communicated causing unnecessary psychological morbidity in unaffected family members. There is a pressing need for research to inform the development of study guidelines and to identify how services are strengthened to support these families during and after their participation in trials. Discourse analysis provides a useful method to collect and analyse data of this type and supports the conclusions of this review.