Interview: Global survey on attitudes to dementia

Kia ora Wendy. Thanks for taking the time to talk to us. Can you tell us a bit more about the survey on global attitudes to dementia?

Kia ora and thank you for giving me the opportunity to talk to your readers about Alzheimer’s Disease International (ADI) Attitudes Around Dementia survey.

We’re delighted to have commissioned London School of Economics and Political Science (LSE) to undertake what will be the world’s largest survey on people’s attitudes to dementia to-date.

We’re into our third week of the ADI survey and have been amazed at the response so far. We’ve had a tremendous response-rate from New Zealand – but we still need to hear from more people!

With 50 million affected by dementia world-wide, dementia is a global health crisis and we need a global response to this survey.

This is an important opportunity for ADI to discover what is happening in the wider community around dementia so we can better understand what barriers exist globally and how to approach and overcome them.

Why is this research needed?

Stigma remains the single largest and most pervasive barrier facing the dementia community, preventing people from seeking advice and support.

In some countries we are aware that stigma results in people being locked away, even chained up, and excluded from society. Even in countries with dementia strategies and awareness raising activity, we want to find out why people still delay going to seek help when they are worried about their own memory or that of friend or family member.

Every three seconds someone develops dementia, yet most people with dementia do not receive a diagnosis or support.

Deaths due to dementias more than doubled between 2000 and 2016, making it the 5th leading cause of global deaths in 2016 compared to the 14th in 2000. Despite its prevalence, dementia is a silent killer, as stigma continues to be a major barrier to diagnosis, treatment and care. Moreover, dementia’s prevalence is growing rapidly as the global population ages. By 2050, it’s expected that there will be 152 million people living with dementia, the majority of these in low- and middle-income countries.

How can we get involved with the survey?

The survey is easily accessible on the ADI website and will be available until the 14th June. Click here to complete the survey.

The questions are predominantly multiple choice and the survey is fully anonymous, accessible and available both online and offline in over 20 languages. ADI is seeking feedback from four key groups: general public, health and care professionals, people living with dementia and carers of people with dementia. It will only take around 10 minutes but completing it will benefit people with dementia all over the world. We really need to hear from people living with dementia. Lived experience is absolutely vital in our understanding of stigma related issues.

When will we find out the results?

The data and information we collect in the survey will form the basis of ADI’s World Alzheimer Report 2019 and will be released during World Alzheimer Month in September.

What do you plan to do with the findings?

Apart from our World Alzheimer Report, ADI will use the findings to inform our global advocacy efforts to encourage governments worldwide to adopt National Dementia Plans in accordance with the WHO Global Action Plan on Dementia. By 2025, 75% of all Member States are required to have a National Dementia Plan. Currently, there are only 32 plans worldwide. We would need 21 new plans every year from 2020 to reach the 2025 goal.

Here in New Zealand, 4 out of 5 of us know or have known someone with dementia, but 45% of us also report that we feel we know little about it. What do you think should be done to help better educate us all about a condition that affects most of us in some way at some point in our lives?

Raising awareness of dementia is so important and civil society, such as Alzheimers NZ, has an important role to play in this. The idea of being ‘dementia aware’ and the concept of being ‘dementia friendly’ is all about putting the person living with dementia and their families at the center. First, we need to make sure we take a holistic approach to supporting the person living with dementia to achieve the best quality of life reasonably possible. We also need to ensure that people with dementia are respected and included in society, with their rights and capabilities recognized. Finally, we must reduce stigma by creating greater awareness of dementia.

In order to be more effective at reducing stigma, we need to understand it better – and that is exactly what we are hoping this survey will help us do.

ADI wants this to be the world’s biggest survey about attitudes around dementia, so please participate and help us by spreading the word to anyone who may have an interest. This is the most important survey you can do this year!

Click here to complete the survey
Submissions close Friday 14th June