Landmark national dementia resource database to fill the gaps in New Zealanders' dementia knowledge

15 July 2016

The general population of New Zealand along with the healthcare system of New Zealand has a relatively low awareness of dementia and the needs of those with dementia and their whanau and families and carers. This new project by BRNZ aims to challenge and change that lack of knowledge by using innovative online and offline delivery methods.

Health care workers may also be less aware of best practice in caring for people with dementia. From the well trained doctors and nurses, to the less trained and unregulated health care and community workers, all can improve their knowledge, attitudes and practices related to dementia.

Why does New Zealand need a national dementia resources database?

A recent Dementia Pathway Project at a DHB level, which targeted secondary and primary care did reveal interesting findings, however it hasn’t gone far enough.

This is because the roll-out of dementia resources in similar projects have been regional, fragmented and largely dependent upon funding.

Additionally, an all-encompassing dementia resources database could provide much needed insight into experiences of dementia from a Māori and Pacific view. It could mean new and improved dementia resources that are relevant to Māori and Pacific people.

Research into materials of this nature has shown that resources of this kind do help with community and health care worker education, and they do make a difference to community knowledge.

However materials are better utilised and comprehensive when placed within an integrated programme.

Community attitudes are hard to influence, however with the right material within a comprehensive programme, community attitudes can and will change towards people with dementia and their families and carers.

Dementia rates in New Zealand are set to rise exponentially in the coming decades
Image courtesy of Alzheimer's New Zealand

Objectives

1. Changing attitudes towards dementia within New Zealand  

Changing attitudes towards dementia in New Zealand along with boosting awareness and knowledge of dementia and dementia care for:

Health care workers. 

People with dementia, their families and carers.

The general population of New Zealand.

2. Standardising resources and tools

Standardising dementia tools, resources and knowledge across primary and secondary care, DHBs and non-government organisations in New Zealand.  

Phase 1: Scoping

Project Manager Emma Lambert will complete a comprehensive scoping phase where all available resources for health professionals and the public will be reviewed.

This includes materials developed in association with Ministry of Health funding for the New Zealand Framework for Dementia Care, resources from Alzheimer’s New Zealand, regional initiatives, along with national and international multimedia, MOOCs, training materials and web resources.  Resources will be catalogued by source, intent, content and format.

The results of the funded project to survey the public about dementia knowledge (Feigin, BRNZ, 2015) will be incorporated into objectives to fill gaps and ensure the public focus addresses gaps in knowledge. A focus on resources for Māori, Pacific, Asian and non-English speakers will outline these gaps at a National Level.

Phase 2: A comprehensive communications plan

In phase two, we will develop a comprehensive communication plan for tools and education for health professionals. This will focus on information gaps, novel communication strategies, and comprehensiveness and accuracy of content of resources.

  • Partnerships with Māori, Pacific, Asian, immigrant and non-English speaking groups will guide the development of appropriate resources for these groups.
  • Experts in health literacy and readability and translation will be engaged.
  • Ongoing focus groups will be convened with Māori and Pacific groups to ensure accessibility and readability.
  • Comprehensive needs for web development and web content will be identified.

Phase 3: Dementia tools and resource development

Using world leading methods of development the Goodfellow Learning Unit of the University of Auckland in collaboration with recently developed or developing initiatives will develop tools for health professionals.

Each online module will include podcasts, video clips and a quiz for before and after learning assessment and resources for web delivery to health professionals.

We will develop age and ethnicity appropriate resources along with long-term sustainable tools and processes in order to fill knowledge gaps.

Alzheimer’s NZ has a comprehensive strategy for public awareness and information with a developed website and strategy.

The communications advisor for BRNZ, Athena is an expert in social media, online content delivery and digital channels.

By leveraging the knowledge, resources and capabilities of various supporting parts of the team, the BRNZ National Dementia Resources Project can achieve their impressive goal. 

Emma Lambert. Project Manager for the BRNZ National Dementia Resources Database

Emma Lambert. Project Manager –BRNZ National Dementia Resources Database

Ngāti Tama & Ngāti Mutunga

BSc PGDipSci MSc

“I am working alongside loads of amazing people and organisations on this project looking to create a database of available dementia resources,” Emma explains. “We would like to see what’s already available in NZ and abroad. We’ll be assessing what can be shared, in order to give organisations larger scope for their resources (and thus more bang for their buck), as well as identify where resources might be lacking so those gaps can be plugged.”

 

From Ngāti Tama and Ngāti Mutunga, Emma completed both her undergraduate and postgraduate degrees at the University of Auckland. Her BSc was in Biomedical Science with a Neuroscience specialisation. For postgrad, she branched into a new area, studying behaviour, evolution and ecology (with a focus on neuroethology) for her PGDipSci and then an MSc project in sensory science, looking at the molecular anatomy of Epiphyas antennae, their olfactory system.

 

“I'm hoping that this project will continue the work already in place to help build awareness of dementia, break stigma, and empower people to be able to find things out for themselves. I'm also hoping that we can promote a national platform that helps get the right information to the right people at the right time. We want this database to be up-to-date and easy to use for all people, from HCP to your layman,” Emma says.  

 

Along with many other neuroscientists in BRNZ, her whanau hail from Taranaki. “I was lucky to connect with some amazing Maori whanau in Taranaki in my previous research project. The other half of my family are Samoan, related through my mum’s step-family,” she explains.

 

“[The National Dementia Resources Database] is very new for me so that exciting. I can see the potential for some really great and meaningful work to come out of this project, both in the short term and long term. We want be able to share information with anyone impacted or interested in dementia, GPs, patients, researchers, community groups, kids, adults, families, everyone! It's definitely going to keep me engaged,” she says.

 

Emma will be making contact with a variety of people impacted by dementia for the project. You may be getting a call or email from her soon. For inquiries into the project, email Emma e.lambert@auckland.ac.nz  or dementia.resources@auckland.ac.nz