BS (Ohio State); MA, PhD (Duke University); FASSA

Dementia affects 50 million people worldwide, with about 500,000 people living with dementia in Australia. These numbers will triple by 2050 if no treatments are found. Despite several hundreds of clinical trials aimed at finding treatments to delay onset or slow the progression of neurodegenerative diseases, however, no treatments to date have cleared clinical trial and regulatory hurdles needed for bringing disease modifying treatments to people affected by any form of dementia.

Although the treatment of disease symptoms (e.g., cognitive dysfunction, depression, abnormal movements) has an important role in improving quality of life, the ultimate goal remains to prevent or reverse neurodegenerative disease by preventing or slowing the underlying disease process. Current techniques for detecting and measuring the behavioural evidence of dementias, including cognitive decline, movement abnormalities, and emotional/psychiatric symptosms, however, is insufficient to rapidly achieve this outcome.

Social scientists have a key role on these fronts.

To be able to change the future for people with dementia, we must be able to detect and monitor the clinical signs of disease, and chart the experience of people with dementia and their care partners. Only by objectively and efficiently measuring signs and symptoms can we test treatments, or monitor effectiveness of programs to improve livability for people with dementia. Digital technologies are being increasingly employed for measuring patient outcomes, but they remain largely unaccepted as evidence for drug effects in clinical trials.

Social scientists play a central role in devising and testing the measurement tools without which no treatment or intervention effects can be detected. The design and approach to measuring symptoms and disease signs for dementia has been exemplified by research conducted by Professor Julie Stout and her team, which has focused on measuring the signs and symptoms that occur in the genetic neurodegenerative disorder, Huntington’s disease. Huntington’s disease, like other progressive neurodegenerative diseases causing dementia, has as a cardinal feature the decline in cognitive function. In the context of multisite international observational trials, Stout’s team led the way in characterizing and measuring symptoms as they emerge in people with the Huntington’s gene as they transition from healthy to disease diagnosis. Armed with information from these observational trials, in collaboration with the CHDI Foundation, which exists to find treatments for Huntington’s Disease, she then developed and began validation studies of a cognitive assessment battery fit-for-purpose for Huntington’s Disease clinical trials, called the HD-CAB (Huntington’s Disease Cognitive Assessment Battery). Five recent or ongoing commercially-sponsored clinical trials use the HD-CAB, and from this set of tests, evidence is now beginning to emerge to suggest that treatment effects may be detectable with new therapeutics.

Understanding the clinical outcomes and patient experiences requires precise measurement methods that are the bailiwick of social scientists. The growing recognition of the central role played by measurement methods, and increasing availability of technology options, means that we are witnessing the transformation of methods for monitoring signs and symptoms of dementia, which will undoubtedly play a key role in identifying the first and all subsequent disease-modifying treatments for neurodegenerative diseases.

Post-doctoral Fellowship, Program in Neuroscience, University of California San Diego,

US National Institutes of Mental Health Training Grant (1992-1994),

Eleanor Cox Riggs Professor of Social Sciences and Ethics (Endowed Professorship, 2006-2007),

Memberships in the International Neuropsychological Society, Society for Neurosciences, Australasian Cognitive Neuroscience Society, Huntington’s Study Group, European Huntington’s Disease Network