Research and Collaboration

Why is research collaboration so important? Senior researcher Professor Julie Williams gives her view.

For the last 25 years my team at Cardiff University has been focused on trying to find genes that affect a person’s risk of developing Alzheimer’s disease.

Over the years we have formed ever larger collaborations, first within the UK and then with colleagues in Europe and the USA. This partnership work has led to the discovery of over 40 susceptibility genes, giving us a much clearer understanding of Alzheimer’s disease.

As a result of this work and the vast amounts of genetic data we have collected and analysed, we are now able to predict whether a person will develop Alzheimer’s disease with reasonable accuracy.

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My most prized possession: A story of care from Nairobi

Yasmin Jeevanjee with her father.

Teacher Yasmin Jeevanjee tells her story as a care partner in Kenya.

I was born and grew up in Nairobi, Kenya. After finishing my secondary education, I went to study abroad. I travelled extensively and eventually settled in London, where I pursued a career in teaching, my expertise being in Early Year’s Education. My parents continued to live in Nairobi, and I would visit them frequently.

On a visit in 2012, I felt that something was not right with my father. He seemed more forgetful than usual and, when he did not recognise an old family friend, alarm bells went off in my mind. In 2013, he was seen by a neurologist and diagnosed with Alzheimer’s Disease.

My first reaction was one of shock and horror. This couldn’t be happening to my dad. My dad was a highly successful lawyer. It was hard to accept. Indeed, some of my family members were in complete denial.

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Dementia Research: Where are we now?

ADI Vice Chair Dale Goldhawk with his father, Alphonse

Dale Goldhawk, Vice Chair of ADI, takes a personal view on psychosocial dementia research.


It’s a sad fact that, to date, not much in the Alzheimer research world has been considered “groundbreaking”. The development of cholinesterase inhibitors certainly marked some progress but, while those medications can help with symptoms, they bear no resemblance to an effective treatment. And that’s where we are today in 2019. Sure, there have been some research and clinical trials, showing the usual “promising results” but these promises are often modest at best.

To my way of thinking, any breakthroughs will likely come through psychosocial not biomedical research. And when I think of quality of life breakthroughs, one immediately comes to mind.

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Viewpoint: My First WHO Executive Board

by Annie Bliss, ADI Communications and Policy Officer

ADI’s Communications and Policy Officer, Annie Bliss, at the WHO Exec Board in Geneva

On 24 January 2019, wrapped up in Winter wear, I touched down on Swiss soil for my first World Health Organization (WHO) Executive Board meeting. My first observation: “Wow, Geneva really is a functional and miniature city!” After a smooth bus journey to the WHO building (or as it’s locally known, OMS), I was met by the hustle and bustle of side meetings and coffee runs. ADI’s mission was to ensure that the profile and priority of dementia remained high, with key statements planned under Non-communicable diseases (NCD) and Universal Health Coverage (UHC). I was also aware from discussions with colleagues of the successful advocacy efforts of ADI and its members at the last Executive Board to ensure that dementia was specifically identified in the 13th General Programme of Work.

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Let’s Talk About Dementia Research: Your Questions Answered

In November last year, ADI held the first in a series of global webinars: Let’s Talk About Dementia Research: Demystifying Trials, Access and Understanding.

We created the series to provide a unique opportunity for the public and Alzheimer and dementia associations to engage directly with health and social care professionals, as well as companies involved in dementia research.

As far as we know, no other webinar has provided such ‘public to professional’ access before.

We heard from the pharmaceutical industry, researchers and clinicians conducting research and clinical trials, as well as primary care health professionals supporting patients and families. Most importantly, we heard stories of people living with dementia and their care partners about their lived experience. 

During the webinar, we invited participants to ask our panel their most pressing questions. Whilst we were able to cover many of these topics live, in the lead up to our second webinar: Let’s Talk About Dementia Research: Global Barriers and Access to Trials, we wanted to respond to some of your unanswered questions.

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Islamic values in dementia care with Dr Heriawan and Amalia Fonk-Utomo

Dr Heriawan, Amalia Fonk-Utomo and DY Suharya at WISH Qatar 2018

On 12 November 2018, ADI facilitated a seminar on Islamic values in dementia care at the World Innovation Summit for Health (WISH) 2018 in Doha, Qatar. ADI’s Asia Pacific Regional Director DY Suharya invited geriatrician Dr Heriawan and Amalia Fonk-Utomo, Chairperson for Stichting Alzheimer Indonesia Nederland, to present. It was a wonderful opportunity for us to spread global best practice in dementia care with a local relevance. In this blog, Dr Heriawan and Amalia share their thoughts on hosting this insightful seminar.

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