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

side-event_may-18_34-e1528198002711.jpg

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”

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).

24-carer-story-1
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.

results-of-solanezumab-study_dec-2016
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”

Member profile: Cuba

WAM 2013

By 2030 Cuba is predicted to have the highest proportion of older adults in any Latin American country. Today around 19% of the population is aged over 60, but in just 15 years’ time this will rise to 30%. Cuba is a middle income country, but has health indicators similar to those in high income countries, and a life expectancy at birth of 78 years.

As a result of the rapid aging of the Cuban population, it is estimated that the number of people living with dementia, currently standing at around 150,000, is expected to double by the year 2030. During the next 30 years, we expect there will be a tenfold increase in the demand for long-term care for people living with dementia.

The Cuban Section on Alzheimer’s Disease, in Spanish Seccion Cubana de Alzheimer (SCUAL), was founded in April 1996 and its main objectives have been to give information about dementia and educate family members and professionals, as well as to improve medical care for people living with dementia. In 2000, SCUAL became a member of ADI.

Over the past 8 years, SCUAL have participated in a national program to assist people who are living with a disability, and to promote early diagnosis of dementia and risk reduction programmes. To date, more than 40,000 people over the age of 65 have taken part. The programme also helps to support families and training for health professionals. SCUAL collaborated to develop an intervention program called ‘Helping carers to care’, which provides basic education about dementia and specific training on managing behaviours.

SCUAL also participates in the work of the 10/66 Dementia Research Project, a network of over 100 active researchers from more than 30 low and middle income countries who are studying the prevalence and impact of dementia. In Cuba, more than 3,000 participants have been interviewed so far. SCUAL is now supporting a new project by the 10/66 team, to help understand changes in prevalence and incidence over a 10 year timeframe. The project also focuses on the social impact of dementia and how best to identify underlying risk factors and implement care packages.

The Cuban’s National Dementia Strategy has been developed by SCUAL in partnership with the Ministry of Public Health, working together with researchers from several fields and with families and caregivers of people living with dementia. The plan has recommended that the strategy focus on increasing awareness, developing support services, promoting early diagnosis and risk reduction, quality assessment and implementing good clinical practice guidelines. It also asserts that there should be an increase in the availability of specialists in primary healthcare and in investment into dementia research.

SCUAL undertakes a wide variety of activities to help improve awareness about dementia in Cuba, including an annual conference and a campaign for World Alzheimer’s Month and the World Alzheimer Report, including an annual Memory Walk on September 21, World Alzheimer’s Day.

In 2011, Cuba was also the venue of the Iberoamerican Congress on Alzheimer’s Disease, one of ADI’s regional meetings, where 500 attendances from Latin America, Spain and other countries came together to discuss how to improve the lives of people with dementia in the region.


By Juan de Llibre Rodriguez, President of SCUAL