Perth family studies: Identification of an at-risk population for dementia prevention studies

The biological mechanisms involved in late-onset dementia are identifiable in mid-life. The associated neurodegeneration is the result of a complex interplay between genetic and environmental factors. Identifying critical windows to target interventions offer the best hope for risk reduction and dementia prevention outcomes. The earliest clinical symptoms are more difficult to identify and often not apparent until substantial neurodegeneration has taken place. Research efforts will need to be more efficient and should consider focusing on populations most at risk of dementia for participation in longitudinal prevention studies rather than screening the general population. With ethics approval from NHS Tayside, we recruited families from Perth, Scotland into an observational study investigating their psycho-educational needs following a diagnosis of dementia. We asked people living with dementia to provide the medical history of their first-degree relatives. Family members corroborated the medical history information and we used death certificates to verify family histories. Data were collected over eighteen months from March 2013. We also collected supplementary information via a telephone interviews with adult offspring and siblings to ascertain perspectives on dementia risk prevention. We have recruited 50 families. Interview data from 37 families stress the need for more information relating to the dementia continuum and estimations of dementia risk. We have also identified a cohort >70 unaffected at-risk adults aged between late 30's and mid 60's with a family history of late-onset dementia. We will discuss how the family history method has helped us to develop a strategy to identify at-risk offspring in families with a history of late-onset dementia. To our knowledge, we are the first group to have identified at-risk offspring and a verified family history in Scotland and possibly the UK. Most of these individuals (69) have said they want the opportunity to participate in longitudinal dementia prevention studies. We are seeking funding and collaboration to develop a prevention study using epigenetic biomarkers, neuroimaging and tests measuring cognitive function. Study design would stratify adult offspring into different risk levels so we can identify and respond with appropriate bespoke risk reduction interventions within the optimum therapeutic window.