“Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly

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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”

Elevator pitch: A short story about the needs and hopes of Africa

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.

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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”

Why a Global Action Plan on dementia is so important

Originally published 19 December on the Biomed Central Network.

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”

A good decade

Rebekah Churchyard, 27, speaks about her relationship with her Grandfather living with dementia, and her passion for new research as a member of the World Young Leaders in Dementia (WYLD).

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Rebekah with her grandfather in Ontario, Canada.

When you’re fourteen years old, there’s a lot going on. Dealing with fluctuating hormones, emerging personalities and high school doesn’t leave time for much else. I was fourteen in 2003 when my Grandma first told us that my Grandpa was diagnosed with ‘semantic dementia’. She carefully explained that this is a special type of cognitive disorder where he would gradually lose the ability to do things like plan, make decisions and talk.

My Grandpa was a well-known teacher in Fergus, Ontario, Canada. His career path was one of the two stories he would always tell; “Did you know I was a teacher? It’s funny because I never wanted to be a teacher…”, he would say.

To generate extra income for their retirement, my grandparents operated a Christmas Tree Farm. They become well known and loved community figures. Grandpa would spend his days on his tractor in the fields, pruning and baling trees. They had planned to travel in their retirement as a reward for decades of hard work. We knew things would change the day he put water where oil is supposed to go in his chainsaw. It was scary for my Grandma.

My Grandma did a wonderful job accessing support and resources available to her, especially from the Waterloo-Wellington Alzheimer’s Society. My Grandpa did not enjoy attending Day Programs and Grandma hired personal support workers or asked family and friends to come stay with him. He would regularly greet guests and say with a sigh, “You know my brain’s no good anymore”. At first, I responded with a dismissive yet reassuring “I still love you”. Continue reading “A good decade”

Alzheimer community between disappointment and hope regarding drug development at CTAD conference 2016

clinical-1Almost 50 million people worldwide now have dementia, and it is estimated that 60-70% of them are living with Alzheimer’s disease. There have been no new drugs approved for the treatment of Alzheimer’s since 2003 and the community of people with dementia and their families, researchers, clinicians and Alzheimer associations globally are eagerly looking for some good news. The International Congress on Clinical Trials for Alzheimer’s Disease (CTAD) is always a good place to get an overview of what is in the pipeline and the 9th CTAD took place last week in the city of San Diego in South California, USA.

There are a number of possible new treatments being developed for which people have high expectations. Eli Lilly and Company reported two weeks ago that the results in a second phase III trial of solanezumab were negative. Lilly used the conference to present the data of the study in more detail and this was followed by a panel discussion between experts.

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Results of the phase III trial of Solanezumab announced at the 9th CTAD Congress in 2016 showed limited effect when measured against a placebo.

Data from the study showed that participants who used the medication showed a slight improvement on a number of measures compared to those that received a placebo, but the difference was not big enough to be significant. That means that the result of the study was negative and Lilly will not put solanezumab forward for approval.

The mood at the conference was of high disappointment, but at the same time not giving up for the future.

Lilly deserved credit from the audience for the sober and honest way the data was presented. The scientific community will now further debate what these results indicate for the directions to take the search  for a cure for dementia including Alzheimer’s Disease. The mood at the conference was of disappointment, but at the same time of not giving up for the future.

However, there was some more positive news as well … Continue reading “Alzheimer community between disappointment and hope regarding drug development at CTAD conference 2016”

Support in Oman

My own personal experience of dementia began when my mother seemed to forget where she had put her things. Initially, we as a family assumed that this was simply a normal part of ageing, but gradually she started forgetting where she was and could not recognize the people around her, often repeating questions that we had already answered.

It was at this stage we realized that this was not a normal part of ageing, so we took her to various doctors for consultations, and she was diagnosed with Alzheimer’s disease. Dementia changed her personality completely, and we didn’t know what to do or how best to support her. It was and still is hard witnessing her decline. I would spend the whole day watching her walk from one room to another, not knowing what she wanted.

She didn’t want people to do things for her because throughout her life, she was someone who was highly organized both in her personal and professional life. She trained as a teacher, becoming a Headmistress and finally an Inspector. Her personal life was one of refinement in her duties to her family and society. She was softly spoken, articulate, forgiving, and always finding good in others, seldom criticizing people; instead often invoking Allah to guide that individual. Continue reading “Support in Oman”