Every three seconds, someone in the world develops dementia. There are 47 million people living with the disease worldwide, and in Ireland, 55,000 people have dementia, with 4,000 more people developing the disease annually. According to Alzheimer’s Research UK, dementia is the single biggest killer of women in the UK and the second biggest killer of men. But despite this, research funding for the disease lags far behind that of other diseases, with cancer obtaining £544 million a year, heart disease obtaining £166 million a year, and dementia securing a mere £90 million a year. As well as a lack of funding, dementia faces a lack of researchers. For every four cancer researchers, there is only one dementia researcher. In an attempt to increase public understanding of the disease, neuroscience Ireland hosted a symposium in the Tercentenary Hall, where Dr Susan O’Callaghan, Prof Michael Rowan, Dr Sabina Brennan and Mr Ronan Smith, a dementia sufferer, discussed and explained the ominous disease.
Prof David Henshaw, President of Neuroscience Ireland, kicked off the event by introducing Dr Susan O’Callaghan, a medical gerontologist in St James’s Hospital. O’Callaghan began by explaining how she is continuously shocked by the public’s lack of understanding of dementia, and how upon asking her parents what they believed dementia to be, despite being parents to a neurologist, they reinforced her belief that scientific information about dementia is not being relayed to the general public. O’Callaghan spoke of how her mother believed that dementia and Alzheimer’s to be two completely different diseases. The majority of the general public would be under this impression too, when in fact, Alzheimer’s is a form of dementia. She also highlighted the fact that many would believe that memory is always affected in dementia, but this is not always the case. By definition, dementia is an impairment of function, not necessarily an impairment of memory. O’Callaghan then went on to explain how there are in fact many types of dementia, most of which are unheard of by the general public.
She explained that 50 to 70 per cent of dementia patients suffer from Alzheimer’s dementia, 20 to 30 per cent of patients suffer from vascular dementia, 10 to 25 per cent suffer from frontotemporal dementia, and 10 to 15 per cent suffer from Lewy-body dementia. The different forms of dementia differ in how they affect the patient, but all have one thing in common: neural atrophy which results in a severe decline in function. From inability to sleep and changes in mood, to loss of memory and changes in personality, the symptoms for each type of dementia cause extreme distress in patients and family members.
To follow up on O’Callaghan’s explanation of the disease and its symptoms, Rowan, professor in neuropharmacology in Trinity, proceeded by saying that, as a pharmacologist, he often wonders how one might tackle Alzheimer’s disease before dementia takes hold. He touched on the history of Alzheimer’s by explaining how psychiatrist Alois Alzheimer discovered Alzheimer’s when his patient Auguste Deter, who presented to him with memory problems, sleeping issues, mood disorders and general confusion, died. Upon conducting a post mortem, he discovered tangles mainly found within nerve cells and protein plaques mainly found outside cells. Further research found that the protein “Tau” was the protein in the tangles and “Amyloid Beta” is the protein found in plaques. He suggested that detecting these proteins early may aid in diagnosing patients with dementia earlier. Currently, patients will have been subjected to 15 years of brain atrophy before presenting with symptoms of the disease.
Brennan, an assistant research professor in Trinity’s School of Psychology, then took to the stage and explained how her focus is on how to prevent dementia as opposed to how to treat or cure it. She spoke of how she doesn’t understand why the public doesn’t talk about dementia. Brennan expressed how exasperating it is to see the colossal amount of stigma is attached to dementia, and that her overarching goal is to get rid of the stigma surrounding the disease. She compared dementia now, to how cancer was seen 50 to 60 years ago. Cancer was often referred to as “the big C” – people feared it, and saw it as a death sentence. People no longer fear cancer, they sympathise with its sufferers, but now the same fear surrounds dementia. Brennan would like to bring dementia to a point where sufferers are able to put off the symptoms for long enough, as she put it “put it off until they die from something else”. She explained how, generally, people see dementia as a normal part of aging, when it is not. This mindset leads to a false belief that nothing can be done. However, this could not be further from the truth.
Currently, Brennan explained, there is low health literacy with regards to dementia. People don’t know enough about it and how to prevent it. Brennan pointed out that the World Health Organisation (WHO) prioritised advocating stigma reduction of dementia this year. Brennan explained how she wants to induce empathy towards dementia patients as opposed to fear. She solemnly spoke of how as a society, we don’t alienate people who suffer from other diseases, we only shun those who suffer from dementia. Brennan jokingly said she refers to dementia sufferers as “the leper colonies of our time”. She spoke of how “we have to stop hiding these people away. We don’t hide people away with any other disease”. In an attempt to reduce the stigma surrounding dementia, Brennan began a project where she makes short films to address stigma and health literacy. She wanted to find a way to get dementia into common parlance. So she made fun cartoon clips to get the ideas out there without making people scared or upset after watching the videos.
Smith was diagnosed with Alzheimer’s aged only 52. He proceeded Brennan’s inspiring talk by sharing his experience of dementia as a sufferer and a carer. He began by discussing the difficulty of caring for his father who also suffered with dementia. After his father passed away from the disease, he himself was diagnosed in late 2013. He spoke of how there was a completely inappropriate shame attached to the condition when his father had it, and how things haven’t changed much.
After a particularly difficult and stressful week at work, he went on, Smith’s wife encouraged him to go to memory clinic in St James’s, where he was diagnosed with “probable early stages of early onset Alzheimer’s disease”. After a few extremely difficult months of coming to terms with his diagnosis, he made a mantra for himself: “Plan for the probable, work for the possible and hope for the future”. Smith stressed the fact that he realised that hope is a decision. “You have to decide to hope again and again and again”, he explained. “There is reason to the hope. Its rational hope. There are scientists pouring over the work in lab coats ,these are the people that give me hope. The cure will come. Perhaps not for me, but perhaps for those after me. I know my hope won’t deliver a cure, but it’s a better way to live.”
Smith asserted that he believes doctors should work on helping patients to have a strategy for having hope. “Patients need the engine of hope for effective positive thinking and behaviour”, he said. He explained how he “uses [his] mantra as one would use an exercise circuit. It is difficult, and [he] does have periods where [he] fails at hope”. But when these times come, the words of Samuel Beckett come to his mind: “Fail, fail again, fail better.”
Smith’s determination at the face of such a calamitous illness stirred the audience. He stirred the audience even further upon forgetting what he was saying when he was asked a question by a member of the audience, making the crowd see first hand how the early stages of Alzheimer’s affect its sufferers. But as Smith said, there is hope. With time and determination, scientists will one day find a way to cure dementia.