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Understanding Dementia 2019

Understanding attitudes around dementia: How ADI used a survey to start a global movement


Paola Barbarino

Chief Executive of Alzheimer’s Disease International

If your life has been touched by dementia and Alzheimer’s, you will know that we still have a lot of work to do to change attitudes and perceptions around it.

Dementia is where cancer was 40 years ago

Many people just accept this as an unchangeable fact and in some countries the prevailing thought is that the societal obstacles are so great that we need to resign ourselves that nothing can be done.

But how great are they really? We cannot change perceptions if we don’t understand the scale of our challenge. Dementia and Alzheimer’s are at the same stage that cancer was 40 years ago. As a child I remember my family never mentioned the word cancer and the stigma surrounding it was huge. Look at where we are now; the conversation is open and community support, we all now know, is key to enable those going through cancer and bereaved families to cope with the challenges. We need to do the same to change perceptions around dementia.

Changing our attitudes towards Dementia

We at Alzheimer’s Disease International (ADI), the international NGO that works on dementia, tried to do so by releasing the largest survey ever attempted on people’s attitudes around dementia.

The survey was designed to take into account the perceptions and experiences of the general public, health and care professionals, people living with dementia and carers of people living with dementia. Adopting predominantly multiple choice questions and designed to take only about 10 minutes to complete made the survey more accessible; and making it available  in over 20 languages made it truly global.

Surveys of this kind are so important to represent the voices of people outside the dementia community, as well as those who are impacted by it daily – whether or not they are aware of it.

Safe-proofing against dementia

Only multi-sectoral engagement such as this, will help us sharpen our advocacy with governments around the world; many governments prefer not to tackle dementia and rely on the lack of a movement and of an open conversation to stay inactive on the subject.

Work such as this will also help the younger generations. We know now that there are many risk reduction factors that can decrease the likelihood of developing dementia; a healthy diet with plenty of fruit and vegetables, less meat, no smoking, staying fit, watching your weight etc. We need more public health campaigns to make more people aware of these factors but if we don’t talk openly about dementia we cannot spread awareness.

If you are interested in any of the issues I mentioned, you can read much more on our website or in our reports which are all available for free. You can also help us by following us on social media and taking part in our events. Our conferences are the oldest running conferences on Alzheimers and dementia and they showcase ground-breaking best practice in all the areas touching dementia and Alzheimer’s, such as care, psychosocial interventions, dementia friendly communities and a new strand on technology, innovation and entrepreneurship. The next international one will be in Singapore in 2020 sign up to the mailing list to receive updates

Further information

Results of this survey will form the basis for the next World Alzheimer Report, to be released during World Alzheimer Month in September 2019. I urge you to use this project as an example of how civil society can and should enhance the understanding of an area of health in order to stimulate and bolster governmental action. For more information on the survey, visit this website:

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