Windows on dementia

It's been a tough couple of weeks as more and more of us become affected by Covid-19. The numbers of people testing positive for the virus are rising steadily every day. 

There can be no doubt that contracting Covid is a difficult experience for everyone. But what happens when you are also living with or supporting someone with dementia?

In this episode, we hear from Sarah France, a Taranaki-based doctor specialising in the mental health of older adults. Sarah is a Board Member of Alzheimers NZ, and has extensive knowledge of the aged care system both in the UK and Australia. 

Dementia mate wareware is one of the greatest health challenges facing Aotearoa New Zealand.

Around 70,000 New Zealanders live with dementia right now, which is set to more than double by 2050. This increase is expected to be much faster for Māori, Pasifika and Asian communities.

In September, Alzheimers NZ launched the Dementia Economic Impact Report 2020, produced by a team of researchers from the University of Auckland. This latest study has just confirmed what a monumental challenge dementia will be for Aotearoa New Zealand.

Existing dementia support services are woefully inadequate now, and are nowhere near what’s required to cope with this growing challenge.

In this episode, we discuss the impact of dementia with two of the researchers behind the report, Etu Ma’u and Makarena Dudley, who are both Senior Lecturers at Auckland University.

Etu Ma’u comes from Tonga. As well as lecturing, he is a specialist old age psychiatrist at Waikato Hospital. He also has a strong interest in dementia risk reduction and in equity, particularly for Pacific populations.

Makarena Dudley (Te Rarawa, Te Aupōuri, Ngāti Kahu) has been researching mate wareware dementia in Māori since 2015, focusing on the development of a theory of dementia from a Māori worldview, a dementia screening tool specifically for Māori, and an app for awareness and prevention.

Champion for Dementia Dame Kerry Prendergast discusses how dementia has impacted her life, and what needs to be done to better prepare New Zealand for the sharp increase in people living with dementia. Both her parents lived with dementia, and her husband Rex has recently been diagnosed with vascular dementia.

Communication can be a big challenge for people living with dementia. As the journey of dementia progresses, people can find it more and more difficult to express themselves clearly, and to understand what others say. 

But as we all know, there’s much more to communication than just words. 

As a Champion for Dementia and writer, Kate De Goldi knows first hand the importance of communication, and the ability to be able to express our thoughts and feelings to the people we care about.

In this episode, we talk dementia and communication with Alison Wray, Research Professor of Language and Communication at Cardiff University. 

Alison’s research into dementia communication focuses on understanding the causes of disrupted communication - not just as a result of the underlying damage to the brain, but also what happens to the norms of social interaction and how this is affected by the cognitive disruptions caused by dementia.

Check out Alison's new book, Why Dementia Makes Communication Difficult.

People living with dementia face enormous challenges, not least of which is their right to make the decisions that are important to them. In this episode, we talk to Disability Rights Commissioner Paula Tesoriero about ways we can better support the rights of people living with dementia. 

As New Zealand’s Disability Rights Commissioner, Paula’s role to protect and promote the rights of disabled New Zealanders. 

Paula is Chef de Mission for the NZ Paralympic team heading to Toyko. She is also a Paralympian cycling gold medalist, a former lawyer, was a general manager at Stats NZ and at the Ministry of Justice. She is a life trustee with the Halberg Foundation, and has held a range of governance roles on various Boards, and she is a mum. 

A recent international report has found that dementia design is 30 years behind the physical disabilities movement.

The World Alzheimer Report 2020, released by Alzheimers Disease International, calls on governments around the world to take action, and include design solutions in their responses to dementia. 

Dementia is a disability, one that is going to become more of an issue for our communities and our government as our society ages. 

So how can we start putting dementia design principles into action? Jack O’Neill is a Lecturer of Architecture at Unitec, researching how an architecture of care that prioritises people with dementia can support them not to “just” live but to live as fulfilling a life as possible.                                                                          

Presenter: Lyneta Russell
Guests: Alison Douglass, Greg Young and John McMillan

The book, Assessment of Mental Capacity: A guide for Doctors and lawyers, can be found here: https://vup.victoria.ac.nz/assessment-of-mental-capacity-a-new-zealand-guide-for-doctors-and-lawyers/

Kate De Goldi's blog series:
Part 1
Part 2