Meet the Expert: Dr. Saskia Sivananthan

Expert in the field of dementia, Dr. Saskia Sivananthan, was a great advisor during the earliest stages of the Ally Bally Bee Project. Here she tells us about her professional background, and discusses her involvement with the project.


Can you tell us a bit about yourself and your professional background in dementia?

I’m a neuroscientist and health data scientist who specialised in dementia.  My approach is to use data at an entire population-level to understand ageing.  This means I work with very large sets of data from entire provinces, states or countries to understand larger trends in dementia care.  Over the past several years I have been working in health system development, which is to work with governments on developing their health services, policy and strategies to improve health for older adults with complex needs and those with dementia.

As a senior strategy and policy advisor I currently consult for the World Health Organisation on its overall global dementia strategy. I co-drafted the WHO’s Global Action Plan on the Public Health Response to Dementia which recently received unanimous support and was adopted at the 170th World Health Assembly by all 194 countries. It identifies key priorities and actions for countries to transform their health systems to support people with dementia and their carers. The vision of the plan is “a world in which dementia can be prevented and people with dementia can receive the care and supports they need to fulfil their potential with dignity, respect, autonomy and equality”.

My team and I are also responsible for developing the WHO Global Dementia Observatory, which we recently launched.  Its an online platform for collecting data on dementia from countries across the world and will be used to help support those countries to create better policies and decisions to support people with dementia in their countries.



Have you ever witnessed the effect that dementia can have on a young child in the family? 

Dementia can be a very difficult disease to understand and grapple with.  When I was first training as a neuroscientist, I worked at a dementia memory clinic where we would have people come for a diagnosis, treatment and on-going care of dementia. People would sometimes come with their families, who have young children. I would see the children struggling to understand what was happening to grandpa or grandma, which is especially difficult in a medical environment. I also have friends with loved ones with dementia and they’ve described not only how hard it is seeing their parents or grandparents deal with dementia, but then trying to explain to their children why someone they love may not be responding the way they expected or were used to.

At the same time, children are very intuitive and excellent at adapting. I’ve seen them become wonderful and loving carers, sometimes even better than adults, once they better understand dementia. They are better at responding to the immediate need being expressed by the person with dementia without existing expectations of what the person should be doing.


“…raising awareness early is an essential first step.”


How important is it that we should explain dementia to young children?

I consider it to be absolutely essential. In fact, as part of the WHO’s Global Action Plan on the Public Health Response to Dementia, awareness raising is a key priority. If people aren’t aware and don’t understand dementia, we won’t be able to support and care for people with dementia in the ways they would want. Young children will be the next generation that not only potentially see dementia first hand in their grandparents, but also care for their parents or other loved ones with dementia when they’re older. In Japan for example, all children learn about dementia in school. They are taught about the signs and symptoms, as well as what they can do to help people with dementia early on.  So raising that awareness early is an essential first step.


You provided professional guidance throughout the Ally Bally Bee Project book’s development – what do you think of the book now that it’s finished? 

It’s wonderful to see the completed book. I know how much work was put into trying to describe dementia as accurately as possible. The book can be a great bonding tool for parents, grandparents and children who are all on the journey of dementia together. On a broader level, it can also help raise awareness of dementia, not just for young children but also the extended family reading it with them.

Rachel Cram
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Rachel Cram

Digital Marketing Assistant at The Ally Bally Bee Project
Digital Marketing Assistant with the Ally Bally bee Project. Working with the Äikäs-Adams family to help more children understand dementia!
Rachel Cram
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