Dementia awareness month: Keeping MiND in mind
Did you know that there are an estimated 28,300 people living with younger onset dementia/YOD (symptoms starting before the age of 65) in Australia? And without a major breakthrough this figure is projected to increase to 41,250 people by 2058 (Dementia Australia 2018. Dementia Prevalence Data 2018-2058).
Timely and accurate diagnosis of dementia, especially YOD, is challenging, and is too often a long and complicated journey for patients and their families. The average time to diagnose is 3-5 years. During this time, patients and their families have multiple assessments (seeing on average 3-5 specialists) and repeated, invasive and costly investigations, and face misdiagnoses, inappropriate and failed treatments, uncertainty, stress and emotional upheaval. This is of particular concern when dementia is a terminal condition with an average life expectancy of 10 years post diagnosis. Imagine going through all of this in your life in your 30’s, 40’s and 50’s – when you are mid-career, have a young family, ageing parents, and financial commitments?
The theme for this year’s Dementia Awareness Month in September, ‘you are not alone’, highlights the importance of ongoing research into dementia, such as The MiND Study – The Markers in Neuropsychiatric Disorders Study.
Patients and their families and carers often share their experience of the diagnosis of dementia being an isolating and lonely experience due to a lack of understanding, education and awareness about the condition.
The aim of the study is to demonstrate the accuracy and benefits of a blood test which looks at a brain cell protein, neurofilament light (NfL), a biomarker of neuronal injury. Recent research has shown that high levels of NfL distinguishes dementia from primary psychiatry illness and non-dementia, with high-accuracy (Eratne et al., ANZJP, 2020).
There are many situations that GPs and specialists face where it is unclear if someone has a mental health or psychiatric disorder, like depression. People with psychiatric illnesses, or people who are healthy, have normal levels of NfL, because nerve cells are not dying. However in many neurological disorders, particularly in dementia, there is nerve cell degeneration, leading to elevated levels NfL in spinal fluid and blood.
The ultimate vision of the Study is clinical translation: the implementation of a routinely, clinically available blood test for GPs and other medical specialists to diagnose dementia earlier, and to improve the outcomes for people with cognitive, psychiatric and/or neurological symptoms, their families, clinicians and the healthcare system. The team through their research also want to help demystify and debunk the myths around dementia being a natural part of ageing an/or an older person’s disease.
Since going live in February this year, the MiND Study has recruited over 100 participants now, with referrals coming from general practices, memory clinics and specialist clinics across Victoria. Not a bad effort given the challenges that COVID-19 has presented. The MiND Study also featured on the ABC’s 7:30 Report – in case you missed it!
Our Study target is 500 participants, with 18 months left to go for recruitment. We are looking for patients with recent (within 5 years) history of cognitive, psychiatric and/or neurological symptoms, as well control participants. The online referral process for busy health professionals is very simple and streamlined.
Patients participating will be referred to a Melbourne Pathology collection centre for a simple blood test.
We are also seeking expressions of interest for research collaborations, ideas for engagement with CALD communities, and MiND puns!
For more information and updates (including expansion to WA, QLD, NSW and beyond!), please reach out to us via themindstudy.org