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Dementia Advocate Bobby Redman, who is living with dementia, presented to politicians in Canberra at our Federal Parliamentary Friends of Dementia event in February. Below is a snapshot of her speech, focusing on the advantages of being involved in dementia advocacy, and the important of being able to access a timely diagnosis.
“Up until 2014 I was a practicing psychologist. In 2015, I started undergoing tests when I noticed changes in my functioning, and that friends were commenting on changes in my personality and behaviour.
After a range of blood tests and a CT scan, to rule out a brain tumour and any other alternative diagnosis, my GP declared that I was just overdoing things and needed to slow down. On my insistence, based on my professional experience, the GP referred me to a neurologist, where I was diagnosed with Mild Cognitive Impairment (MCI) – conditionally attributed to frontotemporal degeneration, based on the simple tests completed in his rooms.
A year later, following neuro-cognitive tests and an MRI this diagnosis was confirmed. This happened because my professional background gave me the knowledge and understanding that what I was experiencing was not normal, and the courage to question the GP.
Following my initial diagnosis, I started researching everything about dementia and acting on this research. I made the decision that I could either sit back and let dementia take me, or I could fight back and do everything in my power to maintain my functioning and keep living my life to the full.
It was also at that time that I became a Dementia Advocate, realising that without my professional knowledge, I most likely would still be struggling with the changes occurring to my mind and body, and believing that it was just old age, or me ‘overdoing things’.
I began to speak publicly, spreading awareness and knowledge, and giving support to those struggling with the disease.
My already busy life became busier, but it was a good busy … a busyness that gave me a purpose, and gave the dementia in my life a purpose. Dementia advocacy has increased my social interaction and my will to keep going. My involvement in research has given me knowledge and hope. Through this knowledge, I have accessed professional advice (through private insurance and my own savings) from a nutritionist to guide my diet, and a physiotherapist to provide me with suitable exercises.
Until now, I have been able to design my own strategies that have allowed me to overcome the challenges of living alone with dementia. As my thinking and planning skills continue to slip, it is getting harder for me to prepare these strategies and I’m now awaiting an occupational therapist assessment. This will help me to identify possible technological and other modifications that I can make to my home, in order to maintain the ability to continue to live alone, as new challenges continue to raise their ugly heads.
Interestingly, although after five years my cognitive and physical functioning continues to deteriorate, I maintain many of my professional skills, even receiving remarks over the years from my doctors that I am ‘functioning too well’ … who would have thought that this was possible?!
Throughout these five years I have regularly thought to myself, ‘thank God for my professional training’. I could never have done it, otherwise. This naturally leads to the question about how people without this training and this knowledge manage. I see and hear about the struggles of those who wait years to receive a diagnosis, only to be told there is nothing that can be done, and to go home and get their affairs in order! It is a disgrace that this should still be happening is this day and age, and more is needed.
In November 2006, I was working as a psychologist when the Better Access to Psychiatrists, Psychologists and General Practitioners through the Medicare Benefits Schedule (Better Access) initiative was introduced as part of the Australian Government’s contribution to the Council of Australian Governments (COAG) National Action Plan. This initiative aimed to encourage more general practitioners (GPs) to participate in the provision of mental health services, improve access to psychiatrists, and enhance the availability and affordability of psychological services provided by psychologists, social workers and occupational therapists in private practice.
It also included changes to the Medicare Benefits Scheme, which provided a structured framework within which GPs could provide early intervention, assessment and management of people with mental disorders, and refer to community based mental health care providers.
The introduction of this scheme changed the world for people living with a mental health condition. Do people living with dementia deserve less? We too need a faster diagnosis in order to access early intervention. While there is no cure for dementia, research is showing there are many early intervention practices, including counselling, nutritional guidance, physiotherapy, occupational therapy, and speech therapy, that can help us to maintain functioning for longer. If we function for longer, it not only helps those of us living with dementia to live a better life, but reduces the pressure on family carers, which in turn keeps us out of residential care for longer – this all saves the tax-payers money!
The bottom line is we all want the same thing – perhaps for different reasons. Whether we are a person living with dementia, a family carer, a community or the government, we are all looking for ways to all live happier, healthier lifestyles as part of our own communities, rather than having people shut away in dementia units in residential care. We are dependant on politicians to help us to develop ways to make this happen.”