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
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.
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.
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.
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
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.
by Annie Bliss, ADI Communications and Policy Officer
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.
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.
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.