26 Nov 2020
Apathy, defined as loss of motivation leading to dysfunction or disability, is experienced by many community-dwelling older people, and is one of the most common symptoms of neurological and psychiatric disorders. It has often been mislabelled as depression, resulting in ineffective treatment, and has a significant impact on an individual’s ability to lead a fulfilling life. Through research undertaken in her PhD, Fleur Harrison, hopes to shine the light on apathy as an under-researched construct which interplays with ageing and the immune system.
How did you first get into researching the ageing brain?
After finishing Honours level studies in Psychology at the University of Sydney, I was determined to start working in research part-time. However, research jobs are highly sought after and it was hard to break into the profession, even a decade ago! I was lucky enough to work in a short-term research role at the Children’s Hospital at Westmead and then the opportunity arose to work as Research Assistant for Associate Professor Lee-Fay Low at the Dementia Centre for Research Collaboration (DCRC). I loved the work and I loved the team, and so here I am eleven years later - still essentially working in the same field at the same university. I’ve made important contributions to some profoundly important large research projects along the way.
One of my proudest achievements is working on the HALT Project, a government-funded initiative to reduce the use of antipsychotics in nursing homes. We had an expert team led by Professor Brodaty and were successful in reducing antipsychotic use by more than 80% in our participants. However, while scrutinising the previous medical records of our participants, I became increasingly troubled at how long they had been prescribed antipsychotics before our intervention. We thus recently published findings which showed antipsychotics had been prescribed for two years on average, without need, without informed consent, and without close monitoring to see whether they were still needed. This is certainly outside government guidelines and raises questions about whether current practices are ethical. The overuse of antipsychotics has also featured prominently in the recommendations made by the Royal Commission into Aged Care Safety and Quality, so we can only hope that vast improvements will be made in the near future.
Did you experience a ‘defining moment’ which led you to this field?
I would say it was not a defining moment, but a “defining decade”! It is by chance that I started in this field of dementia and ageing research, that is for sure. However, it is certainly not by chance that I am delving into the topic of apathy. It seems to be the topic where my work experiences, natural curiosity, training in health psychology, and personal history meet. I had a decade of living with profound fatigue in my early adulthood, due to an immunological/neurological condition. I was fortunate to rehabilitate and recover full functioning, however it was a very hard journey. When later starting to research apathy as part of a large project at the DCRC, I started questioning how apathy differed from fatigue. How did the experience I’d been through, differ from that of someone experiencing apathy? On the surface, they were being managed in separate areas of medicine, yet I wondered whether there were underlying similarities.
In addition, one of my strongest impressions whilst working on the HALT project was that apathy was enormously prevalent in our participants with dementia living in aged care facilities, yet it was scarcely noticed; it was “normal”. When asked to rate apathy on a standardised questionnaire, staff found it quite confronting, as they realised that residents were typically experiencing this symptom at a severe level every day and yet it was not being treated or even recognised.
However, apathy is far from limited to dementia. It also occurs in normal cognitive ageing and can be present in most psychiatric conditions. It is really a transdiagnostic symptom; this is part of why it appeals to me intellectually, and what I am hoping to explore down the track if I undertake postdoc research. There is potential to help so many others who are experiencing something which is currently under-recognised and rarely treated.
Improving our scientific knowledge of apathy and related symptoms is a passion, so I built my PhD topic to allow me to explore this, and to benefit from the mentorship of Professor Henry Brodaty, one of Australia’s and the world’s most well-respected leaders in psychiatry and dementia research. He also just happens to be humble, empathetic and incredibly supportive of me at all times.
I am also tentatively taking steps towards being an advocate for academics with personal experiences of disability or chronic health conditions. Research shows there are many barriers in STEM careers for those with diverse backgrounds. What I found most interesting about one recent publication from Australian National University on this topic was that there were so few researchers with disabilities that they could not be included in analyses! However, this paper showed multiple complex factors may contribute to the under-representation of minority groups. For instance, people of a minority ethnicity had fewer “other author” papers to their credit when they finished their PhD. Another compelling recent publication used machine learning on a huge database of PhD dissertations. It showed under-represented groups produce more novel and innovative research. This fits with my personal experiences in the workplace; that I am open-minded, flexible and willing to go the extra mile to find solutions.
Do you have any personal interests or activities which are protective behaviours against cognitive decline?
Yes, for sure. I am incredibly motivated to look after my health as best I can, as I know what it’s like to live long-term with poor health. The evidence shows that brain health, physical health and mental health are strongly linked. As such, my aim is to be as healthy as I can for myself and my family. For a long time I’ve exercised almost every day, carefully building up my capacity while working within my limits and using every evidence-based health psychology strategy I’ve learned to try and help me along the way! For me, tracking my activity across time, making exercise a non-negotiable, and listening to my favourite motivational music are particularly helpful. Exercise has helped me look after myself, my health and my brain long term.
Dancing has been a passion throughout my life. From being an extra-curricular activity whilst at school, it evolved that I was lucky enough to be welcomed as part of the LGBTQI community and spent a few hours on the dance floor in my time. Dancing for me is pure joy and an opportunity to connect with my closest friends. It is cognitive, physical, and an emotional experience. A couple of senior researchers in this field, such as Associate Professor Lee-Fay Low and Professor Michael Valenzuela have spoken about dance being the ultimate activity for cognitive health so I like to think that it was time well-spent!
What are you currently researching?
How to assess apathy and, in particular, how do we differentiate between apathy, depression, and fatigue? The three are commonly experienced by older adults, and their differential diagnosis is considered a classic problem for medical professionals, particularly psychologists and psychiatrists. If an individual seems less engaged in life and with their friends and family, has less motivation, or is undertaking fewer activities, they may often be diagnosed with depression. If you ask how they feel themselves, they may say, “tired” or “can’t be bothered”. Screening tools are therefore helpful to accurately assess these symptoms and to guide diagnosis.
There are commonly used questionnaires for depression which ask questions about apathy, depression and fatigue. However, there is very little research indicating whether using these questionnaires in this way is valid or clinically useful.
The first aim of my PhD project is therefore to determine the psychometric and clinimetric properties of various questionnaires used to assess apathy in older adults.
I’ve also added a biological aspect to my research. There is a fast-growing area known as biological psychiatry which investigates whether conditions considered a “mental health disorder” have underlying biomarkers. There is strong evidence that the immune system is linked with our psychological state, although our understanding is still limited to fairly broad-brush strokes. For my research, I’ll be looking to see whether apathy is linked to higher markers of inflammation, known as cytokines. This would provide insight to a possibly underlying cause for apathy, and also how it may potentially be treated.
I am also currently co-ordinating the Sydney Centenarian Study, a study of exceptionally long-lived individuals, which we hope will shed light on the determinants of successful ageing.
Why is your research important?
Little research has been completed on apathy. It’s a complex yet under-researched topic, which has a profound impact on an individual’s function and ability to live a fulfilling life. It is essential that we facilitate better understanding of apathy so that health practitioners can diagnose it and potentially provide evidence-based treatment options. Apathy is at the intersection of a number of academic fields, such as psychiatry, geriatrics, psychology and immunology, which means my research may potentially have a positive impact on people with many health conditions.
Apathy may be particularly important as it is likely an early indicator of dementia; a biomarker which can be used for early diagnosis of cognitive disorders. I’ve also found there’s a lack of understanding of apathy and lack of empathy towards individuals experiencing it. There is certainly also stigma around symptoms such as apathy, and I want to help work towards providing evidence to help counteract negative beliefs. My own personal experiences with a stigmatised health condition mean that I’m driven to help others in such situations; it’s pretty much my primary purpose in life. Research feels like a powerful way to potentially help many others.
In my work on the Sydney Centenarian Study, I really just adore speaking to our participants, having a human connection with them, and learning about their fascinating lives. And more broadly, CHeBA has just so many talented people working with such a diverse range of methodologies – neuroimaging, genetics, epidemiological cohort studies – it’s very exciting!
We are all supportive of one another’s projects and it really feels that we’re making a significant contribution to ageing research and the understanding of brain health and cognitive disorders.
I feel extremely fortunate as I fell into working into this field 10 years ago and lucked out. It is a testament to the people who built CHeBA from scratch early on – Professors Henry Brodaty and Perminder Sachdev - that they have brought together such an array of people.
What is the ultimate hope you have for your research?
My ultimate hope is if we understand the differences between depression, apathy, and fatigue, we can provide better treatment options for these debilitating symptoms. Often depression is diagnosed, and antidepressant medication is given and whilst it may help depressive symptoms, it usually does not help apathy. Our systematic review showed there was very little recent evidence of pharmacological treatments for apathy and suggested a standard anti-depressant approach may actually worsen apathy. However, treatment does not necessarily mean medication; nonpharmacological interventions are equally or more important.
This article was written during the COVID-19 self-isolation period. Fleur found that spending time outdoors with her son in a nearby little-used park, and video conferences and text messages with her family and friends supported her mental resilience and kept her feeling healthy while physically isolated.
Fleur Harrison is a Brain Trainer and Acting Study Coordinator CHeBA’s Sydney Centenarian Study and has worked at UNSW Sydney in research continuously for the past 11 years. Fleur is concurrently completing her PhD at CHeBA under the guidance of CHeBA Co-Director Professor Henry Brodaty. Her project examines apathy. She envisages this research may lead to earlier diagnosis and better management of this impactful symptom, as well as neurocognitive disorders such as dementia. Fleur stays healthy outside of her research through regular exercise and spending as much time as possible with her 2-year old son, Sebastian.