This is our reality.
That is the message the Alzheimers NZ Lived Experience Advisory Group shared to service providers, politicians, researchers, decision makers and clinicians among others at Repositioning Dementia: Let’s get real.
The event was the second instalment in the one-day events series by Alzheimers NZ on Thursday 21 September. It was a great day with an engaged audience both in Christchurch and online.
The name ‘Let’s get real’ was to bring the reality of the challenges facing the sector to light, as the organisation marked World Alzheimers Day (as part of World Alzheimers Month).
About 180 people registered for the event (both in person and online), and about 20 percent of these were from people and their whānau care partners living with dementia mate wareware.
We were privileged to hear from a range of people on the day, under our three kaupapa of the Dementia Mate Wareware Action Plan, human rights and the lived experience and research.
A special thank you to the Alzheimers NZ Lived Experience Advisory Group, including Jennifer Watson and Adrienne Henderson who walked the audience through their diagnosis journey alongside their husbands. Sisa Talataina shared their journey of dementia mate wareware with her father, and how this has impacted their whānau.
Their poweful stories were a brief, but courageous, insight into their reality of living with dementia mate wareware – many in the room thanked them for sharing on the day.
The group hopes this insight means decision makers can better understand the impact a diagnosis can have, and what needs to change.
The rest of the programme was jam-packed, and a timely opportunity to bring the sector together as the 2023 General Election nears.
Attendees heard from five political parties – Labour, National, Green, ACT, and TOP – in a lively panel. Green and red cards given to those in the room to show their support (or lack of) for what they had to say, as the sector continues to push for increased funding.
“New Zealanders living with dementia mate wareware and their whānau won’t be able to live their best possible lives – be independent, make decisions that are important to them, live with purpose, and get the help and support they need – without significant investment by government,” says Alzheimers NZ Chief Executive Catherine Hall.
“And in choosing to ignore this reality, our policymakers and politicians are condemning all of us living with dementia mate wareware to a less than optimal existence and saying our quality of life is not important. That’s the reality of life for people living with dementia mate wareware. We need to get real on that.”
University of Auckland’s Professor Lynette Tippett launched the Alzheimer’s Disease International World Alzheimer Report 2023 with a focus on risk reduction, followed by Dr Etu Ma`u who shared the latest prevalance data for Aotearoa New Zealand with a focus on the Pacific community.
Representatives from five of the seven successful Budget 2022 pilots shared a real overview into how they plan to support their communities living with dementia mate wareware (pictured above), which was just one of the many practical examples of great services throughout the day.
Dementia Canterbury’s Lee Andrews and Dr Susan Gee showcased their new Young Onset Dementia programme, and Alzheimers NZ’s Dr Kathy Peri and Dr Meg Sprigg shared more on their work to reduce stigma through the Educational Dementia Immersive Experience (EDIE) and the Dementia Friendly programme.
Attendees found the day ‘riveting’ and said:
“A fantastic day of learning at repositioning dementia – mate wareware”.
“Thank you much for highlighting the need for a public health approach to dementia risk reduction and prevention Lynette. The need is clear throughout an individual’s life span. It is great to have the message on a national stage.”
The third event will be held on Thursday 21 March 2024 in Auckland and online. More details will be shared soon.
Repositioning Dementia: Let’s get real was supported by sponsors Ryman Healthcare, Summerset and Freemasons Foundation and charity partner Verve – thank you for the ongoing support.
Alzheimers NZ is also appreciative of partners the Mate Wareware Advisory Rōpū who attended.