The New Zealand genetic frontotemporal dementia study

Claire Concannon hears from Dr. Brigid Ryan of the University of Auckland about the New Zealand genetic frontotemporal dementia study and speaks to some of the family members involved in this unique research study.

Frontotemporal dementia is one of the sneakiest forms of dementia, arriving with no warning signs and slowly chipping away at a person's personality, behaviour and language. It even impacts your thought process and judgement. If the disease is triggered by an unknown cause, people may not get properly diagnosed until quite late. However one unique New Zealand study into frontotemporal dementia is trying to change all this.

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What happens in brain cells to cause dementia actually occurs over a long time period. The goal of the New Zealand genetic frontotemporal dementia study, being led by Dr Brigid Ryan in the Centre for Brain Research in the University of Auckland, is to identify signals that the body is giving off in the early stages, before symptoms occur, that can be used as indicators that the person is going to develop dementia.

Known as preclinical biomarkers, the researchers won't know exactly what they are until they find them, thus, they need to run many test on participants each year - blood tests to look for microRNA changes, smell tests to check for olfactory deficits, MRI's and memory tests to look for changes in the brain structure and function.

This is where the commitment of the participants come in. This research is only possible because one New Zealand family, following the diagnosis of one of their family members with a version of frontotemporal dementia caused by a genetic mutation, have put themselves forward to be part of the study.

Claire Concannon learns from the researchers about this type of dementia, the details of the study and what they hope to find, while two of the family members involved share their thoughts and experience.

Learn more:

- You can read about the study in a piece published in the New Zealand medical journal

-Learn more about the Centre for Brain Research in this story by Dr. Victor Dieriks on his work on Parkinson's Disease…

Go to this episode on rnz.co.nz for more details