There’s a lot of confusion around the symptoms and effects of dementia. Now, neuroscientists are partnering with playwrights to give a voice to the research.

In labs and clinics across New Zealand, researchers are working towards an ambitious goal: to understand the biological mechanisms behind Alzheimer’s, Huntington’s and Parkinson’s diseases, as well as stroke and sensory loss. What links these conditions is age. Neurodegenerative disorders like these tend to be much more common in people aged 65+ than in any other age group. And the size of that older population is ever-increasing. In 1981, those aged 65+ represented less than 10% of the New Zealand population. Today it’s 15%, and the latest statistics suggest that by 2038, one in four New Zealanders will be aged over 65.

“Living longer is one thing,” says Otago neuroscientist Professor Cliff Abraham, “[but] we want ageing to be a positive experience, and through our research, to improve the quality of life for older people.”  Abraham is the co-director of Brain Research New Zealand (BRNZ), a partnership between the University of Auckland and the University of Otago. BRNZ’s research is interdisciplinary, with scientists working on everything from disease biomarkers to population health. Abraham explains that, as a result, they and their collaborators at the University of Canterbury and Auckland University of Technology use a variety of tools.

“In some areas, it might be cultured human brain cells or different animal models. We have developed new technologies and trialed therapies. We also work on large-scale longitudinal studies, which are helping us to identify the risk factors, lifestyle factors and social factors that contribute to brain decline.”

One of BRNZ’s focus areas is dementia, of which Alzheimer’s disease is the most common form. Different from ‘normal’ age-related memory loss, dementia is a progressive condition that alters the structure and function of a person’s brain. Its symptoms vary between individuals, but even in its early stages, dementia can significantly limit a person’s ability to perform everyday tasks. And the impact of the disease is felt not only by those living with it but also their whānau.

It’s this wider impact of poor brain health that, Abraham says, motivates him to look beyond the lab. “As scientists, we naturally turn to peer-reviewed articles and public lectures to share what we do, but it’s important to find other ways to connect with our community.” Through the national network of Dementia Prevention Research Clinics, Abraham and his team work directly with people experiencing memory problems, as well as collaborating closely with charity groups and schools. This year, BRNZ are trying something a little different – they’re sponsoring a national tour of the ground-breaking play The Keys Are in The Margarine.

Created by a Dunedin-based theatre company, The Keys uses a performance technique known as verbatim, or word-for-word, to showcase the realities of living with dementia. Co-creator Cindy Diver says that this approach is a way to “tell truthful stories in a truthful manner.” She first started exploring verbatim theatre 11 years ago as part of a research group at the University of Otago. Initially, Diver says, they explored the “quirkiness of humans, and their fears and comforts”, but she quickly realised how valuable this form of theatre could be in vulnerable settings where there is “a stigma around a topic, which means that it isn’t necessarily safe for a person to share that story.”

The first topic that Diver tackled was a difficult one: family violence. Working with Professor Stuart Young and Associate Professor Hilary Halba from Otago’s School of Performing Arts, Diver met with survivors and perpetrators of family violence, as well as medical professionals and members of the police force. Their research bettered their understanding of a crucial, complex topic, and was central to creating the play.

In verbatim theatre, productions aren’t strictly ‘written’. Rather, each play is assembled from real-life conversations. The first step is to record interviews with a wide variety of people, known as collaborators. These interviews are edited into a documentary that is shared only with the actors. Then, as Diver explains, each actor uses the film to learn their parts by “studying the collaborator’s eye movements, hesitations, hand gestures, vocal intonations, and every word of the edited interview.” While they perform on stage, each actor also listens live to the audio of their collaborator, via an earpiece. “The actor speaks in time with that person, which means they stay 100% honest,” says Diver. “This process allows us to bring the audience into the collaborator’s room, while keeping that collaborator safe and completely anonymous.”

The result of the Otago research project was the team’s first verbatim play, Hush, which debuted to wide acclaim in 2010. The idea for creating a similar play on dementia came later, through a connection with Dunedin GP Dr Susie Lawless. Among her patients, Lawless had noticed that Alzheimer’s and other dementias were shrouded in stigma, and that people were confused about their symptoms and the disease’s progression. Having been a collaborator on Hush, Lawless felt that a verbatim play might help untangle some of that complexity. Together, Lawless and Diver collaborated again with Young and began developing The Keys Are in The Margarine.

The play finally hit the national stage in 2015 and immediately caught the attention of former BRNZ director, Professor Richard Faull. Diver knew that Faull and the wider BRNZ team would be fantastic collaborators. “They really seemed to appreciate that research could be made more palatable through art.” Shortly after that first tour, Diver was invited to speak to BRNZ’s early career researchers, and alongside her Lawless, later presented at an International Alzheimer’s Conference in Australia. “The doctors and researchers understood that what we were doing didn’t fit on a clinical diagram,” she says, “but it had immense value at a personal level.”

Abraham agrees, saying that although dementia is a difficult thing to discuss, “we shouldn’t shy away from its emotional impact. The Keys is a fantastic, entertaining piece of theatre, but it also makes people think – about what it means to be diagnosed with the disease, or to live with and care for someone who has it. The verbatim format gives it nowhere to hide – the physical, emotional and social costs of Alzheimer’s are there for all to see.”

This is not the only time neuroscience and the arts have overlapped. Long before biomedical imaging technologies, physician Ramón y Cajal’s remarkable drawings helped him to prove that neurons are individual cells. It was a discovery that saw him share the 1906 Nobel Prize in Physiology or Medicine. The two fields have previously collided on stage, too. Canadian rapper Baba Brinkman and his wife, neuroscientist Dr Heather Berlin, regularly combine their talents to create brain-related shows, and US playwright Edward Einhorn has been working in what he’s dubbed ‘neuro-theatre’ for more than a decade. In the UK, Professor Sarah-Jayne Blakemore recently worked alongside teenage performers to create Brainstorm, a play that explores adolescent brain development. And earlier this year, neuroscientists tried to understand the neural basis of dramatic acting by placing actors into an MRI machine while they adopted characters from Shakespearean plays.

From the actor’s point of view, collaborating on such an emotional topic is a unique experience. “Alzheimer’s is a disease that is full of uncertainty, and we’re understanding more about it all the time,” says Diver. “But the emotions of coping with it – as a patient or for the people around them – they all come down to what it means to be human. Combining art and science to unpick all of that is very, very powerful.”

For the full list of dates, venues and details of where to buy tickets to The Keys Are in The Margarine, click here.

A panel on the science of dementia follows the Wellington performance this Saturday, with Cindy Diver, Prof Cliff Abraham, Dr Phil Wood (Ministry of Health chief advisor on healthy ageing) and Prof Lynette Tippett (Director of NZ’s Dementia Prevention Research Clinics).

Laurie Winkless contributes to the BRNZ website

The first ever Oral Health Equity Symposium was held on Thursday and Friday last week. Gabrielle Baker went along to see how the best in New Zealand’s dental sector are hoping to tackle inequities in New Zealand’s oral healthcare.

It’s no secret that our health system works better for some than it does for others. Nor is it a secret that a combined legacy of “murder house” stories from adults remembering their school dental clinic visits and the prohibitive cost of seeing a dentist once we turn 18 means that good oral health and regular dental visits are luxuries for many, requiring bravery and serious coin. 

Oral health data also shows a picture of health sector failure, even when the service is “free”. For example, Māori and Pacific children under five are more likely than other children to have cavities (whether or not they live in areas with fluoridated water supply). 

Over the past two days I joined the 155 other people attending the first ever Oral Health Equity Symposium, in Wellington, hosted by the Māori Oral Health Quality Improvement Group. 

The big question of the symposium was essentially – how do we achieve equity and truly ensure good oral health for everyone? 

As I’ve mentioned before, when we talk about health equity (and its counterpart, inequity) we are talking about unjust and unfair differences in health outcomes between populations. If we are doing it right, we are also talking about a wider picture of differential access to the “determinants of health” – the things that keep us well or contribute to us being unwell. And we are also acknowledging that it is a human rights imperative to address these differences. 

Oral health as a te Tiriti issue

Because the concept of equity is so rooted in us being aware of context, it was natural enough that Symposium presentations quickly became about the fundamental issue of the role of te Tiriti o Waitangi in oral health. 

Otago University professor Peter Crampton delivered a presentation he had worked on with colleague Kura Lacey. Among other things the presentation provided highlights of the Health and Disability System Review panel interim report, published last month. This included the comment that “Māori as Tiriti/Treaty partners have not been well served by the health and disability system.” 

The aymposium was also addressed by Hon Peeni Henare, associate minister of health, who acknowledged the recent recommendations from the Waitangi Tribunal in its report Hauora, calling them “fantastic”. But this praise did not equate to the government accepting the Waitangi Tribunal recommendations from its first look into health services and outcomes. Instead, it was more of a comment that there is an opportunity to design a gradual process that leads to more equitable outcomes for Māori.

Oral health is a policy Cinderella

Moving beyond the more constitutional content of the symposium’s presentations, there was also significant discussion on the government’s oral health priorities (or lack of them). During the symposium oral health was described as a Cinderella policy area, in reference to it receiving less attention than it should from policy makers. 

• The last national oral health policy, Good Oral Health For All, For Life, was released in 2006 and only one of the seven priority actions has been achieved. Meanwhile the inequities in access to oral health services and in good oral health outcomes remain and there doesn’t appear to be any consequences (for the Ministry, DHBs or providers) for the lack of equitable progress. 
• Good oral health is central to our overall wellbeing (affecting our ability to do everything from smiling freely to chewing food easily) yet it is treated as a separate and siloed issue in terms of health funding. 
• 77 percent of general practice services are publicly funded compared to 24 percent of dental services. This creates a very real barrier to access for people, partially explaining the steep costs we all experience as adults seeking dental care. 
• Only a very small amount of this public oral health funding is available for services for adults on low income (about 8 percent of DHB oral health funding).

Māori oral health providers as the equity solution

During his address, Minister Henare referred to the work of his father, the late Erima Henare, in setting up Ngāti Hine Health Trust and trying to achieve a lot with very little money. I first met Erima Henare within weeks of starting work in Māori health policy at the Ministry of Health more than 13 years ago. At the time, Ngāti Hine Health Trust and four other Māori health providers were being funded to expand their oral health services, so to me the story of oral health is inextricably linked to Māori leaders and health providers advocating for Māori self-determination and expecting to be being properly funded for the delivery of services.

Self-determination too was a thread of the symposium. Whānau stories shared throughout the sessions emphasised the need for Māori led services, and for a culturally safe, culturally competent oral health workforce. Members of the oral health quality improvement group, such as Ora Toa (based in Porirua and Wellington) shared how they run their services to improve Māori outcomes. And presenters shared their views that achieving equity would be easy enough if there was substantial investment in Māori providers working in Māori communities. Yet, only around ten of the 280 Māori health providers throughout the country have contracts to deliver oral health services.  

Despite this there was still an optimism surrounding the symposium. “There’s a lot of momentum out there in the sector, particularly from Māori providers and community leaders, to turn the tide and urgently tackle inequities in the health system,” says Charrissa Keenan, an experienced health researcher, policy advisor and oral health expert who worked with the Māori oral health Quality Improvement Group on the symposium. 

Where to now? 

Keenan and her colleagues presented an equity matrix to the symposium that proposes a set of actions and priorities for oral health, which was added to over the two days. This includes advice to government to demonstrate a commitment to water fluoridation, the reduction in the availability of sugary drinks and increased DHB accountability for equity. To paraphrase Moana Jackson, who spoke on the second day of the symposium, the act of imagining the matrix and its content are important steps in achieving Māori wellbeing and improving oral health. 

The other crucial step though, as was made so clear in the symposium, is to sort the fundamental te Tiriti relationship. The Waitangi Tribunal has given its indication of how to do this in primary health care at least, through Māori self-determination, support for Māori health providers and legislative change to require equity in health. It has also said that an independent Māori health authority should be explored by the Crown and claimants as part of a Treaty compliant health system.

These are not small changes, and while they may have to be gradually achieved, they have to be done with Māori as partners. Because doing it the other way, without Māori, is what got us this expensive, scary oral health system that Māori providers and others are having to work so hard to change.