This is our story – a qualitative research report on living with dementia

Why is this project important?

Did you know dementia affects 70,000 people in New Zealand (not including their care partners and family) and is likely to increase to 170,000 people by 2050?

People with dementia can live meaningful lives and contribute positively to their families, whānau and New Zealand. Yet, they are too often portrayed negatively and dehumanised. This research flips that narrative on its head. The research challenges the stigma and myths surrounding the condition. It provides a platform where 49 people living with dementia, and their care partners, tell of their challenges and joys in their own voice.

People with dementia can live meaningful lives and contribute positively to their families, whānau and New Zealand. Yet, they are too often portrayed negatively and dehumanised. This research flips that narrative on its head.

The process we took and the people we worked with

The process started with our participants. People with dementia are often excluded from research about their lives. Alzheimers New Zealand commissioned this research to make known the lived experiences of people with dementia and their care partners in New Zealand.

People living with dementia guided the research project from start to finish. People with dementia are a diverse group. Therefore, we used qualitative semistructured interviews to tailor the research to individual abilities and circumstances. We followed the Dementia Engagement and Empowerment Project (DEEP) Guides to develop research tools and guide the interview process.

People with dementia showed us how they are living meaningful lives on their terms. However, living a meaningful life with dementia is not easy. The research supports the call to action of the Dementia Declaration. Developed by people living with dementia, the Declaration show what they need to live well.

What we delivered

Through sharing their stories, this project built deeper understanding into the lives of people living with dementia. The research contributed to the Action Plan – Improving Dementia Mate Wareware Services in Aotearoa New Zealand for 2020 to 2025. The Plan outlines the changes needed to improve the health, independence, and quality of life of people living with dementia sustainably. Decision makers are now equipped to increase and improve support services.

We delivered an easily digestible report in plain English – a finalist in the Plain English Awards 2021. Internationally, the report is on the World Health Organisation’s Global Dementia Observatory (GDO) Knowledge Exchange Platform.