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”

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

Scotsman’s message of hope to Japan

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As Glaswegian James McKillop strode towards Arrivals in Tokyo airport last November, he read the customs sign. Had he anything to declare? Yes – he had a positive message of hope and the strong belief in the right to live well for almost 5 million people with dementia in Japan.

James – his journey

Now 75, James was diagnosed with dementia at 59. After recovering from the shock and encouraged by staff from Alzheimer Scotland, he realised that he could still lead a fulfilling life. The challenge facing him was to find his voice to express his determination to do so.

Soon, James was talking about his experiences candidly in venues ranging from care homes to conferences. He became a key founder member of the groundbreaking Scottish Dementia Working Group in 2002. The Group, led by people with dementia, works towards making life better for people living with dementia.

James’ journey to Japan started when he met the NHK TV Director Yuji Kawamura in Glasgow. Yuji’s follow-up programme ‘Nothing About Us, Without Us!’ on the Scottish Dementia Working Group had a big impact, as the first Japan Dementia Working Group was formed the following month.

Now James, accompanied and supported by his loyal wife Maureen, was in Japan with his message of hope. He had been invited to appear at two ‘Heart Forums’ in Tokyo and Osaka. The theme on both occasions was ‘A new dawn – people living with dementia mapping out their destiny’. The message from James: to exchange learning and share lived experiences.

Two cultures, one experience

James was soon sharing his personal journey of 15 years living with dementia. Speaking directly, James admitted his initial shock on receiving the diagnosis and the dark days that followed and spoke about the possible roles and opportunities for people living with dementia within their community and in society at large. His audiences in Tokyo and Osaka were deeply moved.

Two founding members of the Japan Dementia Working Group also spoke. First, Tomofumi Tanno, a 41-year-old with a two year old diagnosis of Alzheimer’s disease, provided an almost mirror image of the experiences of James’ own journey. Next, Kazuko Fujita, 54, living with dementia for the past 8 years, said that her initial experiences had been similar. For James, Tomofumi and Kazuko, the months following a diagnosis of dementia were blank and bleak with no support. Such a diagnosis can have a huge impact on people with dementia and families, particularly when the community all around lacks awareness and understanding.

Breaking the silence

Someone in the audience asked, “How did you break through the period of despair and isolation?” Tomofumi said that meeting other people living with dementia gave him hope and purpose, and above all encouraging smiles.

Another person asked how to lead a fulfilling life with dementia. Tomofumi answered: “Once out of the blank period and hopeful of a fulfilling life, it is vital to speak up and speak out. As dementia is not a visible condition, those who live with it have to make their needs known.” James added that his “Helpcard” he carries has been very useful, which states that he is living with dementia and what his needs might be.

Tomofumi created the ‘Orange Door’ in his hometown of Sendai to provide a welcoming meeting place by and for those living with dementia, offering a listening ear, guidance and a sense of hope. Kazuko launched a local support group ‘Clover’ in her region Totorri, working for and with people with early-onset dementia. James co-founded the Scottish Dementia Working Group. Their actions remind us that people with dementia are agents for change and improvement. By cashing in on their lived experience, they are leading the way towards a better life for their peers and a more dementia friendly society by influencing policy.

Dementia – we are all in it together

Kumiko Nagata, a panelist, said that dementia is everybody’s business now. In Japan, 1 in 5 will have had direct experience of dementia by 2025. She emphasised the need for meeting people with dementia, if only to hear their voices and aspirations.

 James asked his audiences:

  • If your mother developed dementia, how would you like her to be treated by society?
  • If you yourself develop dementia at some time in the future, how would you like to be treated by society?

Looking to the future

To James’ astonishment he found that his Japanese peers shared the same experiences, mirroring his frustrations, fears and hopes to create a dementia friendly world, a better life ahead for the current 46 million people living with dementia worldwide – and for the many millions to follow.


By Dr Mayumi Hayashi from King’s College London and James McKillop, who is living with dementia

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