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 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).
Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025. Continue reading ““Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly”
Paola Barbarino, CEO, explains why stigma presents a major challenge for addressing dementia in sub-Saharan Africa – and how taking an elevator can lead to greater support.
During my recent trip to attend the 4th Sub-Saharan African Regional Conference of ADI in Nairobi, organised in partnership with Alzheimer’s Kenya, I stayed at a local hotel with several African members of ADI. During the conference we had heard and shared experiences about serious issues of stigma and denial surrounding dementia in the region and how difficult it was to persuade the governments to do anything. That said, the Kenyan government committed during the conference to promoting an action plan on dementia by mid-2018, thereby proving that if people get together they can act as a catalyst for good.
The team had just returned to the hotel after a very intense session. On the television in the hotel lobby, the BBC were breaking news of a new study which suggests there is a link between the loss of the sense of smell and possible development of Alzheimer’s disease. We all cheered as any step forward, no matter how small, really makes a difference in our community, forever hopeful for a solution. Continue reading “Elevator pitch: A short story about the needs and hopes of Africa”
Dementia is the name of a group of progressive diseases that affect cognition and other crucial functions of the brain. Alzheimer’s disease is the most common cause of dementia, followed by vascular dementia, dementia with Lewy bodies and Frontotemporal dementia (FTD).Age is the main risk factor; there is a change of 1 in 15 at the age of 65, increasing to 1 in 3 for those over 85.
As our world population rapidly ages, there are a growing number of people who develop dementia. Research showed that in 2015, there was one new case of dementia somewhere in the world every three seconds. This is four times as much than new cases of HIV/Aids. There is currently no cure for dementia.
The impact of the disease is huge. First of all on the individual, who may step by step lose the grip on his or her life. Then for the family, who are in most of the world the overwhelming majority of those who care for a person with dementia, and finally for society, that has to deal with growing group of people seriously in need for care and support. Continue reading “Why a Global Action Plan on dementia is so important”